We are officially home! Oh how over joyed, yet humbled I am to be able to say this, for I did not believe we would be taking Payten home from this hospitalization, not because I was giving up hope, but rather because of the unknown and the different experiences that I had, which led me to believe that she would be going home to her Father in Heaven. Fortunately we were blessed with more time. I do not understand the why to all of this, or the why to the experiences I had, all I can say is that they happened and I will eventually understand with time the whys to all of this, but for now, I will just enjoy the gift of time the Lord has blessed me with. We were in the hospital for two weeks and during these two weeks I really took time to pondered about life and eternity and God's plan for us. I love a quote my husband came across the other day by Spencer W. Kimball which states, "If we look at mortality as a complete existence, then pain, sorrow, failure and short life could be a calamity. But if we look upon life as an eternal thing stretching far into the pre-earth past and on into the eternal post-death future, then all happenings may be put in proper perspective." I am so grateful for this knowledge, because during these past two weeks, where parts of it were spent watching Payten fight for her life, I was able to find comfort in this knowledge, because I truly believe these things to be true. I believe that this is not the end, but rather just the beginning of a beautiful life and that whether Payten is here with me on earth or in heaven, we are a family, she is my daughter forever and we will be reunited after death and that is what gets me through tough times. That is what gives me hope, for I do not know what I would do without this faith/knowledge.
While in the hospital, I really have come to enjoy being able to visit with the Chaplin's, for they are not there to argue truth or religion, but rather are there to listen, to encourage and to strengthen and it is so nice to just talk with them and share feelings I have and have them share feelings they have. While I was chatting with one the other day, I was reminded of control and how control really is an illusion. Yes, we have agency in this life, where we have control over our choices, but in all reality, our life is in God's hands, it is his will what happens to us, yes we make decisions and choices, but many times, things that we are faced with, are not controllable, they are not repercussions of choices we made. Some of are trials are due to poor choices, etc. but I believe majority of life's trials are ones that we have no control over. And I believe God places them in our path to give each and everyone of us the opportunity to learn and grow. This life is not the reward, but rather it is the test and the sooner we realize this, the better we will be and the more prepared we will be to face these trials that fall in our life's path. We are pieces of coal, going through the fire to later become beautiful diamonds and every diamond needs polishing! That is what this life is all about, the refiners fire. We each will have different challenges/trials we will face, because we are all different and we have different learning styles and we are all at different points of growth in our lives and so that is why no two trials are or will ever be the same. But the outcome is the same if we allow it to be. We are all given the opportunity to learn the things the Lord would have us learn. We are given opportunities to learn about LOVE, COMPASSION, UNDERSTANDING, COURAGE, SELF DISCIPLINE, CHARITY, SERVICE, HUMILITY, etc. but it is up to us whether we learn these things or not, because we can take a trial and we can either be bitter from it or we can become better because of it.
It does not matter what the trial is, it may be death of a loved one, marriage difficulties, divorce, not marrying at all, a child born with a disability, a child with a life long illness or one who is faced with a terminal disease, or no children at all, or miscarriages, or losing a job, or a wayward child/loved one, or ill health, or financial hardships, the list could go on and on, but no matter what, they can all teach the same lessons and end the same way, with growth and development. This is the Lord's way of helping us to be able to receive his image in our countenance. We can become as he is, through these life lessons and we do not need to do it alone, he is there to help us. For he has taught us that if we trust in the Lord with all thine heart; and lean not unto thine own understanding and in all thy ways acknowledge him, he shall direct thy path. He will help us! I am not saying that we will not struggle or feel anger or worry about the trials of life, because we will, for we are only human and these are human emotions and reactions. I am just saying that if we learn that we can not control everything that happens to us in life or change some of the things we face and we turn to our Lord for help, we will be able to endure them much more easily and we will most likely learn the lesson he has prepared for us to learn. In no way am I perfect at this, rather I have had three years full of trial, after trial and with each one I seem to be getting better and better at finding the good in them, rather than focusing on the bad. But that does not mean that they are not still difficult, because they are. Nor does this mean I no longer struggle with them for I still do and I still struggle with fully being able to put all my trust in God, because that is a hard thing to do, it is an easy thing to say, to trust in the Lord with all thine heart, but to truly do it ,is hard, but I can honestly tell you, that when I have done this, the result has been amazing.
My life has been really hard (for me!) especially these past three and a half years and there have been times where I wished I was someone else, but in all reality I love my life for I have learned so much about myself and about others. I have learned that we can not judge anyone for we do not know what they have faced, are facing, or will face. There have been many a times where I have thought, oh, how could they possibly understand what I am going through, they have it so easy, they don't know what it is like to face hardship, then I find out, they have lost a child, or they were homeless for a time being, or their spouse died, or they are a single parent raising children and have no idea how they are going to support them, or their loved one is dying of cancer, etc. Again the list could go on and on and I realize everyone is facing something, yes, mine is very difficult, for mine is a child who is disabled and suffering from a progressive brain disease and it is something that is relentless, tiresome, emotionally draining, physically demanding, never ending, yet, it could be worse and I am no better or worse off than another, just different. I have learned to have compassion for others and have understanding, because I am not in their shoes and I do not fully understand their circumstance and I am not their judge, nor do I want to be! And I will tell you, this is so hard, because again, we are human and we judge each other, but I can tell you that through these trials I have faced, I have become better at practicing this. I have been humbled in so many ways, we lost our home and I was humiliated because of it and I worried what others thought, but I had to learn not to care, for it was not something we could control, our circumstances were far beyond anything anyone could handle and I had to swallow my pride and I had to learn not care what others thought of me, for they did not know the reason behind it. There have been times where my water has been shut off, or my electricity was turned off and no it was not because of financial problems, rather it was because I forgot, for my life gets so busy, I forget to pay my bills at times and I am being serious!, but I bet when you first read that, you thought really you didn't have money to pay your bills, again don't judge, for we do not know the reasoning behind the why.
Being the mother of a special needs child is hard, you get stares, you get unfair judgements, comments, questions, etc. And People ask me how I can be so patient with others regarding this matter and I think, I use to be that person, all it is, is ignorance. I use to be that person that thought, geese can't you control your child?! Or what is wrong with them? Was it something you did or was it just by accident? And I have had those questions of misunderstanding. I have been ignorant and so I can not be upset with anyone for not knowing or understanding, because you will never fully understand it, until you live it and so all I can do, is be kind, be loving, be patient, be understanding and try to teach them about it. It is hard and there are days that I want to scream at people for their uncaring, mean comments and judgements, but it does not do any good, I just end up feeling bad and so I am better off trying to show them love and compassion, rather than anger and upset. Instead of getting upset because someone sat there and watched me struggle with opening a door or struggled caring the heavy load that I have to carry when I take Payten out or people who sit and stare at me and Payten, I choose to be better, I choose to try to be aware of my surroundings and help where I can and not stare when it is so hard not to. I just try to be better not bitter!
Because of Payten I have learned what unconditional love is and what compassion truly means. I have learned what service is! Not just what giving service means, but what receiving it means as well. I love serving others, I have always found joy in the service of others, but I use to have a hard time accepting service from others, until Payten, then I was faced at times with no other choice than to accept it and I that helped me to realize what service truly meant and how great it is to serve others as well as allowing others to serve you. I am truly grateful for the lessons I learned from these past few weeks, for I learned of love and faith and trusting in God's plan and will! I gained a greater understanding of our Savior Jesus Christ's love for us and for his atonement and what it truly means. I realized the love that our Father in Heaven must have for us as well, for he gave us his only begotten Son, that he could die for us and suffer for all our sins, so that we could conquer death and through and by his Grace return to live with him again. I came to the realization that no matter what happens, it will be okay, the Lord will help us through it, he knows each of us personally, and he loves us and he understands us. This experience has given me strength. This life is indeed very hard and we will be faced with many things, but as long as we realize most of them are not because of our choices or wrong doing, and not because the Lord hates us, but rather because he loves us and wants us to learn and grow and become like he is. And as long as we choose to become better and not bitter, and we choose to start seeing the good in life, rather than all the bad, we will indeed become that beautiful polished diamond the Lord wants us to be! We will indeed return to him with honor and we will have his imaged in our countenance!
I have grown to know these things to be true and I hope that you will too and that we can help each other to become better and not bitter! May God bless us all! For we have many blessings, one of mine being that I was able to bring my daughter Payten home from the hospital again, to be with our family a little longer, so that we can learn and grow from her. It will not be an easy road and we are going to have allot more things added to our list of to do's for her, but I can tell you, it will all be worth it, for the reward is to come! And because I have been given the gift of more time, I am going to use it! I will not waste it, but rather treasure it and make the best of it. I will make memories of the time I have, that I will have to hold on to for the rest of my life, for there will come the day that Payten will not come home and those memories will be the only thing I will have! May we all find the joy in life and learn from the lessons life has to offer us! For we are all diamonds in the making!
Wednesday, April 18, 2012
Thursday, April 12, 2012
May God's Will be done.
It has officially been a week since Payten was admitted to the ICU at Cardon's Children's Medical Center and I am sad to say that she is still really sick. On Tuesday evening, I left the hospital with frustration in my heart because the original admission for her was high fever of 105.6 and increased secretions. Which later through a urine sample and blood cultures etc. we found it was because of a severe kidney infection/UTI. They did an ultra sound and found a little damage on the kidneys and found that the left kidney was larger than the right, so they were worried that her Kidney's were refluxing or that the was something anatomically incorrect with either her kidney's or bladder, so on Tuesday we took Payten down to Radiology for a procedure called a VCUG, which is a procedure where they place a catheter in her and then they fill her bladder and put dye through it and take pictures following the dye. We were hopeful that it would show something, not because we wanted another thing added to Payten's list of medical issues, but rather because we wanted answers as to why she keeps getting these kidney/UTI infections. This was Payten's third major infection and we knew that if we kept having infections there, she would eventually go into kidney failure, so we just wanted answers as to why they might be happening, but we got nothing. The test showed little reflux and no abnormalities and so therefore they kind of placed blame on us as parents saying that hygiene can play a role in these infections as well. That really hurt me, because I take great care of my daughter we bathe her regularly and she is not in diapers for long periods of time, she does not spend a long time in the bath, first of all because she can't and second of all because we know that it is not good to do so.
So as I said I left with a very heavy and frustrated heart on Tuesday night, feeling like I was the worst mother in the world. I was so worried they were going to send her home and we would have no answers as to why and be right back in there with more infections, because in my heart I knew something was wrong and is still wrong. Wednesday morning came and I was not worried really about Payten's health, because she was doing better, they had cleared the infection and they were planning on sending her home and I had finally come to grips with that. I thought maybe that is what Payten needed, to come home and be with her family and if she got another infection then we would deal with it then. But when I got to the hospital my world was turned upside down. I walked into her room thinking nothing at all and then I saw my daughter, she was a pale grayish color, hooked up to her ventilator while awake, crying out in pain (some sound was coming out because she was on the vent), eyes sunken in, and fever of 104. I just broke down sobbing. What was wrong with my little girl, no one could tell me. All they could say was that she was in critical condition at that moment and they were taking special care of her and watching her extra closely. That did not bring me much comfort, all I could think was, is this the end? Were all the feelings I have been having actually happening at this moment? I was scared to death, I called Joseph, my mom and had them come down, then we called Joseph's mom a little later and had her come down. We were saying our goodbyes because looking at her, you thought she was going to die, she looked horrible. I even went as far as having my dad pick my other kids at school and bringing them in to see her and say their goodbye. We prayed together as a family and we told Payten that she could go with God and live if that is what she needed to do, we asked the Lord to help Payten not be in so much pain and we told him that if it was his will, we wanted to release Payten's soul to him so that she would not suffer any longer.
We held her and tried to comfort her, but comfort would not come, until they finally sedated her. Then she calmed and Joseph and I took turns holding her while she was in bed and talking to her and singing to her. I told Payten how much I loved her, I told her that she was my angel and that I was so pleased to be her mommy. I told her how grateful I was for the things she taught me about unconditional love, compassion, true happiness, joy, etc. I let her know everything I loved about her, her smile, her big eyes, her curly hair, her laugh, her perfect hands and feet, her personality, etc. And I told her I would miss all of those things. I told her that she did not need to stay here for me anymore, that I was strong enough now to say goodbye. I told her I did not want this for her, that I wanted her pain to go away. I told her that if she saw her Grandpa Merrill or any other family members that had already passed on, that she needed to go with them, that she need not be scared, because they would take good care of her, they loved her as much as her mommy and daddy did and that they would keep her safe until we were reunited again. I told her that once she allowed God's will to be done, that she would be happier, she would be able to run free and skip and jump and laugh. I told her that she would be able to spread her beautiful butterfly wings and fly. I asked her for one favor, I asked her to visit us often in our hearts and to watch over her little brother Emmett for he would need her. Then I kissed her cheek and told her to go with God and live.
Now, I do not know what is going to happen, I do not know if she is going to come home with me, but I do know that I have let her know everything I would want her to know, just in case she does go back to live with her Father in heaven. As of right now, they are still sedating her and giving pain medications, we are going to try to ween the sedative to see how she does and stay on top of the pain with medication. Her diarrhea is better, she only had one bout this morning, so we are going to try to start some pedialyte and see how she does with that. Still no answers as to why or what the infection is exactly, all we know is her little body is fighting something and we are waiting to see which is stronger, Payten or the infection. We are waiting to see what Heavenly Father has in store for us, whether his will be to allow us to have her longer or if his will is to bring her home to heaven.
Her fevers are still high, even though they have been giving her Tylenol and ibuprofen whenever they can. Her white blood cell count is pretty low, so they are going to keep an eye on that, her lactate is high and they said last night she was is acidosis. But today the acidosis looks a little better, but the lactate is still high. I just wish I knew what the Lord wanted to for her, so I could come to peace with whatever that was/is. I know our family is being lifted through prayer, by some many people who love her, but my sincerest request is that you do not prayer for miracles, I am not saying I do not want a miracle to happen if it is meant to happen, what I would rather you ask in your prayer for Payten is that the Will of God be done, whatever that maybe. Pray for the suffering to end and for Payten to be happy again whether that be here on earth or in heaven, I just want it to be what God wants, not what we as human beings want. Thank you all so much for your love and support, we truly appreciate you all.
So as I said I left with a very heavy and frustrated heart on Tuesday night, feeling like I was the worst mother in the world. I was so worried they were going to send her home and we would have no answers as to why and be right back in there with more infections, because in my heart I knew something was wrong and is still wrong. Wednesday morning came and I was not worried really about Payten's health, because she was doing better, they had cleared the infection and they were planning on sending her home and I had finally come to grips with that. I thought maybe that is what Payten needed, to come home and be with her family and if she got another infection then we would deal with it then. But when I got to the hospital my world was turned upside down. I walked into her room thinking nothing at all and then I saw my daughter, she was a pale grayish color, hooked up to her ventilator while awake, crying out in pain (some sound was coming out because she was on the vent), eyes sunken in, and fever of 104. I just broke down sobbing. What was wrong with my little girl, no one could tell me. All they could say was that she was in critical condition at that moment and they were taking special care of her and watching her extra closely. That did not bring me much comfort, all I could think was, is this the end? Were all the feelings I have been having actually happening at this moment? I was scared to death, I called Joseph, my mom and had them come down, then we called Joseph's mom a little later and had her come down. We were saying our goodbyes because looking at her, you thought she was going to die, she looked horrible. I even went as far as having my dad pick my other kids at school and bringing them in to see her and say their goodbye. We prayed together as a family and we told Payten that she could go with God and live if that is what she needed to do, we asked the Lord to help Payten not be in so much pain and we told him that if it was his will, we wanted to release Payten's soul to him so that she would not suffer any longer.
We held her and tried to comfort her, but comfort would not come, until they finally sedated her. Then she calmed and Joseph and I took turns holding her while she was in bed and talking to her and singing to her. I told Payten how much I loved her, I told her that she was my angel and that I was so pleased to be her mommy. I told her how grateful I was for the things she taught me about unconditional love, compassion, true happiness, joy, etc. I let her know everything I loved about her, her smile, her big eyes, her curly hair, her laugh, her perfect hands and feet, her personality, etc. And I told her I would miss all of those things. I told her that she did not need to stay here for me anymore, that I was strong enough now to say goodbye. I told her I did not want this for her, that I wanted her pain to go away. I told her that if she saw her Grandpa Merrill or any other family members that had already passed on, that she needed to go with them, that she need not be scared, because they would take good care of her, they loved her as much as her mommy and daddy did and that they would keep her safe until we were reunited again. I told her that once she allowed God's will to be done, that she would be happier, she would be able to run free and skip and jump and laugh. I told her that she would be able to spread her beautiful butterfly wings and fly. I asked her for one favor, I asked her to visit us often in our hearts and to watch over her little brother Emmett for he would need her. Then I kissed her cheek and told her to go with God and live.
Now, I do not know what is going to happen, I do not know if she is going to come home with me, but I do know that I have let her know everything I would want her to know, just in case she does go back to live with her Father in heaven. As of right now, they are still sedating her and giving pain medications, we are going to try to ween the sedative to see how she does and stay on top of the pain with medication. Her diarrhea is better, she only had one bout this morning, so we are going to try to start some pedialyte and see how she does with that. Still no answers as to why or what the infection is exactly, all we know is her little body is fighting something and we are waiting to see which is stronger, Payten or the infection. We are waiting to see what Heavenly Father has in store for us, whether his will be to allow us to have her longer or if his will is to bring her home to heaven.
Her fevers are still high, even though they have been giving her Tylenol and ibuprofen whenever they can. Her white blood cell count is pretty low, so they are going to keep an eye on that, her lactate is high and they said last night she was is acidosis. But today the acidosis looks a little better, but the lactate is still high. I just wish I knew what the Lord wanted to for her, so I could come to peace with whatever that was/is. I know our family is being lifted through prayer, by some many people who love her, but my sincerest request is that you do not prayer for miracles, I am not saying I do not want a miracle to happen if it is meant to happen, what I would rather you ask in your prayer for Payten is that the Will of God be done, whatever that maybe. Pray for the suffering to end and for Payten to be happy again whether that be here on earth or in heaven, I just want it to be what God wants, not what we as human beings want. Thank you all so much for your love and support, we truly appreciate you all.
Monday, April 9, 2012
Life's an Hour Glass, may we make memories of the past!!!!
I have been on one Hell of a roller coaster ride and am still on it screaming for the conductor to stop and let me off! I seriously am on edge with everyone and everything. Typically when Payten goes to the hospital I am so immuned to it, that I really don't react, it is just a way of life and I say oh well she is here and in a few days she will get to come home and we will go back to a merry little life. But this hospitalization has thrown me for a loop. I don't recall being on such an emotional roller coaster in my life, expect for at the beginning when all of this begun. I am a literal wreck. The only thing that seems to help me is blogging. That is why I have been doing it so much lately. For it allows me a little release from my emotions. For it seems that no matter how loud I scream at the conductor to stop the ride, it just keeps on going, round and round! So when I am on here, I feel free to say and write and do anything I please and that seems to be the best medicine for me right now in my life.
Right now, I feel and I am either crying or wanting to to pull my hair out in frustration. I just want to do nothing! I don't want to deal with anything or anyone. I just want a vacation from life and from reality. I have never had a hard time staying at the hospital with Payten and dealing with all the strife that comes with mothering her, but honestly this time around, I am truly having the hardest time being at the hospital and I have been on edge with everyone around me and that is not me. Maybe I have remained too strong for so long that I am snapping into pieces! And I hope and pray that one day I will be able to collect those pieces up and put myself back together so I can become that strong momma again!
Like I said before, I had the feelings that I was going to lose her, but that I would probably eat my words tomorrow! Well here I am eating my words!(for now at least!) And that is okay, I am so over joyed to be able to say that Payten is doing better and will soon come home, but I am also frustrated, for I wish it were more simple, I wish that Payten's life was more black and white. I wish it was not so unknowing, but rather and open book that told the future, but alas no life is ever like that! I know that even though she is getting better, this is not going to be an easy road, for Payten is not coming home fully well. She is adding to her list of problems and that is the toughest part for me to swallow, because I want her list of problems shrinking not lengthening! Today, I talked with the Head Hospitalist, I told him that I felt like we have been getting the run around this visit. I told him that I felt like every doctor was telling us something different regarding Payten and her care and he apologized to me. He said that it was as hard a situation for them as it was for us, because normally Payten comes in for the same old thing and they know exactly how to treat her, but this time was different, Payten through them for a loop, for it was something totally different, that they had no I idea on how to help Payten exactly, so they had to go through trial and error to figure out the best way to help her and they still are searching for answers, that will hopefully come tomorrow morning after her procedure.
I guess I am just frustrated with my Lord right now. No I am not angry with him, rather just frustrated, for I do not need feelings and impressions and experiences happen in my life, such as the ones that occurred the past few days, that lead me to believe she is going to be going back home to him, if that is indeed not going to happen. Because, I have been so sick with grief, that I have lost precious time with my daughter and so we had a long talk last night, LOL! And I told him, as much as I want to not be blind sided by Paytens death, I also don't want to experience these emotional roller coaster's, because I am one that believes in listening to all feelings and experiences and therefore it is not fair to me or my family! But at this moment I am glad that I will have more time with my Payten, but I am sad that there will be added struggles to her already hard life. We saw many doctors today and they went over what the plan was for her. They said that due to the severity of her infection, they do not believe it is coincidental, but rather that there is something anatomically incorrect causing the infections and so therefore it was necessary to perform the VCUG to see what that abnormality could be. They went onto say that if they find nothing to be wrong, then we will need to put Payten on a continuous antibiotic to control the infections and keep them from happening. We asked how that would work, for she seems to already be so resistant to so many antibiotics and they said that was a really good question, that they would have to do tons of research and find antibiotics that she has never taken before and use those, but again my worry is that eventually those will lose their effect and what do we do then? The other possibility is surgery to fix the problem, I don't know what type of surgery it would be, meaning what they would exactly do, all I know is that there are several different things that could be wrong, that different surgeries would fix, but each surgery is different, so we again we will need to wait until it is done to know exactly what we are being faced with.
To me, the hardest thing to deal with is the fact that it seems like Payten is doing so well in so many different ways from a therapy standpoint and yet doing so horribly from a health standpoint. It breaks my heart that she has to have something new going on that will require treatments and follow ups. But the doctor said that if we do not do something we are headed toward Kidney failure, and so this is their way of trying to nip it in the butt before that happens, because heaven knows we do not need Payten going into Kidney Failure for it will not be good. So again, even though Payten is doing so much better, she is still not better, for she has some serious complications that have to be addressed. I guess my feelings were right in a way, we are heading down a slippery slop that might not end well. I just wish I knew exactly when that would be and what to expect.
So my prayer for all of you tonight, is that you realize this day, that life is an hour glass made of memories from the past, so don't waste it on the little things. Don't use your days to worry about the not so important things of life, such as a perfectly decorated home, dishes in the sink, kids behaving perfectly or always looking their best, or your to do lists, perfect grades in school etc. Rather hold your children tight, snuggle with your spouse, call all your loved ones just to talk and say hi and reach for the stars! Please hug and kiss every single on of them as much as you can, tell them you love them often. Don't get upset at your children over the little things, rather allow them to be who they are and let them be little! Don't have them grow up to fast. For we do not know the size of their hour glass, all we know is that once the sand runs out, it is over and all we will have our the memories of the past that we made with the. For it will not be the to do lists, the perfect homes, the compliments of good behavior, their grades, rather it will be the memories. That is why I want so badly to take Payten when she is a little stronger on vacation, if I could I would travel the world with her until that small hour glass of hers was empty, but I can't, for I do have life that I have to attend to and other children to care for, so I will have to settle for Disneyland instead.
If time, health and funds allow it, I will take her to Disneyland and I will take her on every single ride she can go on and I will take her to the beach and dance with her in the sand, and let the water caress her feet, for I will not waste my precious time with her, for I am preparing myself because it will soon be at hand the time when heave calls her home and do not want to regret not making memories that I will be able to hold on to, til we meet again. For now though the Lord has given me the miracle of more time, no matter how sad it makes my heart that Payten has to suffer more trials, it is still a miracle all the same, that I will not take for granted. Again, Kiss your children goodnight, read them that bed time story, sing them that special song for tomorrow it may end. I love you all and appreciate all your love and support and you have shown unto me and my family these past few days and years. May God bless you all.
Right now, I feel and I am either crying or wanting to to pull my hair out in frustration. I just want to do nothing! I don't want to deal with anything or anyone. I just want a vacation from life and from reality. I have never had a hard time staying at the hospital with Payten and dealing with all the strife that comes with mothering her, but honestly this time around, I am truly having the hardest time being at the hospital and I have been on edge with everyone around me and that is not me. Maybe I have remained too strong for so long that I am snapping into pieces! And I hope and pray that one day I will be able to collect those pieces up and put myself back together so I can become that strong momma again!
Like I said before, I had the feelings that I was going to lose her, but that I would probably eat my words tomorrow! Well here I am eating my words!(for now at least!) And that is okay, I am so over joyed to be able to say that Payten is doing better and will soon come home, but I am also frustrated, for I wish it were more simple, I wish that Payten's life was more black and white. I wish it was not so unknowing, but rather and open book that told the future, but alas no life is ever like that! I know that even though she is getting better, this is not going to be an easy road, for Payten is not coming home fully well. She is adding to her list of problems and that is the toughest part for me to swallow, because I want her list of problems shrinking not lengthening! Today, I talked with the Head Hospitalist, I told him that I felt like we have been getting the run around this visit. I told him that I felt like every doctor was telling us something different regarding Payten and her care and he apologized to me. He said that it was as hard a situation for them as it was for us, because normally Payten comes in for the same old thing and they know exactly how to treat her, but this time was different, Payten through them for a loop, for it was something totally different, that they had no I idea on how to help Payten exactly, so they had to go through trial and error to figure out the best way to help her and they still are searching for answers, that will hopefully come tomorrow morning after her procedure.
I guess I am just frustrated with my Lord right now. No I am not angry with him, rather just frustrated, for I do not need feelings and impressions and experiences happen in my life, such as the ones that occurred the past few days, that lead me to believe she is going to be going back home to him, if that is indeed not going to happen. Because, I have been so sick with grief, that I have lost precious time with my daughter and so we had a long talk last night, LOL! And I told him, as much as I want to not be blind sided by Paytens death, I also don't want to experience these emotional roller coaster's, because I am one that believes in listening to all feelings and experiences and therefore it is not fair to me or my family! But at this moment I am glad that I will have more time with my Payten, but I am sad that there will be added struggles to her already hard life. We saw many doctors today and they went over what the plan was for her. They said that due to the severity of her infection, they do not believe it is coincidental, but rather that there is something anatomically incorrect causing the infections and so therefore it was necessary to perform the VCUG to see what that abnormality could be. They went onto say that if they find nothing to be wrong, then we will need to put Payten on a continuous antibiotic to control the infections and keep them from happening. We asked how that would work, for she seems to already be so resistant to so many antibiotics and they said that was a really good question, that they would have to do tons of research and find antibiotics that she has never taken before and use those, but again my worry is that eventually those will lose their effect and what do we do then? The other possibility is surgery to fix the problem, I don't know what type of surgery it would be, meaning what they would exactly do, all I know is that there are several different things that could be wrong, that different surgeries would fix, but each surgery is different, so we again we will need to wait until it is done to know exactly what we are being faced with.
To me, the hardest thing to deal with is the fact that it seems like Payten is doing so well in so many different ways from a therapy standpoint and yet doing so horribly from a health standpoint. It breaks my heart that she has to have something new going on that will require treatments and follow ups. But the doctor said that if we do not do something we are headed toward Kidney failure, and so this is their way of trying to nip it in the butt before that happens, because heaven knows we do not need Payten going into Kidney Failure for it will not be good. So again, even though Payten is doing so much better, she is still not better, for she has some serious complications that have to be addressed. I guess my feelings were right in a way, we are heading down a slippery slop that might not end well. I just wish I knew exactly when that would be and what to expect.
So my prayer for all of you tonight, is that you realize this day, that life is an hour glass made of memories from the past, so don't waste it on the little things. Don't use your days to worry about the not so important things of life, such as a perfectly decorated home, dishes in the sink, kids behaving perfectly or always looking their best, or your to do lists, perfect grades in school etc. Rather hold your children tight, snuggle with your spouse, call all your loved ones just to talk and say hi and reach for the stars! Please hug and kiss every single on of them as much as you can, tell them you love them often. Don't get upset at your children over the little things, rather allow them to be who they are and let them be little! Don't have them grow up to fast. For we do not know the size of their hour glass, all we know is that once the sand runs out, it is over and all we will have our the memories of the past that we made with the. For it will not be the to do lists, the perfect homes, the compliments of good behavior, their grades, rather it will be the memories. That is why I want so badly to take Payten when she is a little stronger on vacation, if I could I would travel the world with her until that small hour glass of hers was empty, but I can't, for I do have life that I have to attend to and other children to care for, so I will have to settle for Disneyland instead.
If time, health and funds allow it, I will take her to Disneyland and I will take her on every single ride she can go on and I will take her to the beach and dance with her in the sand, and let the water caress her feet, for I will not waste my precious time with her, for I am preparing myself because it will soon be at hand the time when heave calls her home and do not want to regret not making memories that I will be able to hold on to, til we meet again. For now though the Lord has given me the miracle of more time, no matter how sad it makes my heart that Payten has to suffer more trials, it is still a miracle all the same, that I will not take for granted. Again, Kiss your children goodnight, read them that bed time story, sing them that special song for tomorrow it may end. I love you all and appreciate all your love and support and you have shown unto me and my family these past few days and years. May God bless you all.
Sunday, April 8, 2012
A Window to His Love, that is indeed Payten's Life!
For the past four days, I have never felt more alone,yet more loved, more angry, yet more peaceful. I guess that is all part of the emotional roller coaster that I face being the Mother of Payten. Payten has has had more love shown to her from others this hospitalization than she has in awhile and I believe it is probably because I expressed my fears about losing her. Her night nurse Fifi came and served her by bathing and cleaning her and I have never felt more love shown in one gesture than at that moment. For at that moment, I was reminded of when Christ washed the Apostles feet and when they asked him why he washed there feet he said,"If I then, your Lord and Master, have washed your feet; ye also ought to wash one an others feet. For I have you an example, that ye should do as I have done to you." And I truly believe at that moment Fifi was acting as a disciple of Christ and following his example through serving Payten by washing her. What a tender teaching moment that was for me, I will never forget the love that was shown through her kind gesture in giving my dear Payten a bath. We need more Fifi's, I need to be a Fifi and serve others in as selfless of a way as Fifi served Payten.
I also feel that Payten has taken the opportunity to show her love for her family and friends, more so during this hospitalization then any other she has had, by hugging them and smiling at them when they have come to see her. Since she has been in the hospital these past four days, she has been in allot of pain and she has been extremely lethargic, but there have been moments and yes they are becoming more often everyday, where she will smile at someone and give them hugs and Eskimo kisses, which she rarely does even when she is well and my feeling behind this is that she is taking a moment to show them how much she has appreciated their love and service for her and is in her own little way saying her goodbyes to them. These too have been sweet moments in time that I will cherish and never forget. But with all these lovely moments come the hard and emotional moments of worrying and grief as well and that is where I believe no one will EVER fully understand the extent of what I am facing/going through/feeling and they won't because they are not living it.
They can evaluate the situation all they want, they can read about what I write, they can look at facts and at symptoms etc., but no one will ever feel what I feel as her mother. I worry that people think I am over reacting and I shouldn't, I should not care what others think. I know what my mother instinct has tole me, I know the experiences I have had in these past few days, and that maybe hard for some to understand, but they are real and I will not deny them. Maybe it is hard for others to believe/understand, because they are so personal and so sacred to me. And maybe I should not have shared them. But that is not who I am! Rather I am that person that wants to be as open and honest about everything in my life as I can and so I guess I am going to have critical people who look at me like I am doomsday and negative, but I will never deny what I feel at the moment I am feeling them. I still feel that Payten is fighting for her life right now, my gut is telling me she is very sick and even if she gets through this hospitalization, I have that deep down sick feeling that this will be just the beginning of a down hill slope that will just keep getting worse til the end. I know that sounds like I have given up, but I haven't! I love my daughter with all my heart, she is my life, my light and I have given up hope for her. Rather I want so badly to do all I can to keep her here and to take all these pains and sicknesses and challenges away, but I can't. I am not God and I believe in his will and relinquishing her life over to him for he will do what is best for her.
As Payten's mother,I do my part! I take her to therapies, I work on what they work on at home, we strive for her to sit, crawl, walk, talk, etc., but we also know that, that may not be God's plan for her and we have come to terms with that. I also take her to her different doctors appts. and I give her all the medications that are necessary to try to help her to the best of our ability and I watch her closely and I take her whenever she is sick and do all I can to make her better, but there will be a time that comes that it will not work, we will not be able to fix it, we will try to do all the different things and they will not work because it is not the Will of God. It may not be this time, but that time will come and I believe it is getting closer each day. I believe that her disorder is worsening, for it is a progressive disorder, yes, we are taking the measures needed to try to stop/slow the progression, but in all cases of her disorder the measures quit working and it progressively gets worse and that is where we are right now I believe. These are the feelings I am having, that the medications are losing there effects on Payten and that her disorder is worsening and because it is a progressive brain disease, I think it is self explanatory how it will end.
I was selfish at the beginning of Payten's life, I did not want to let her go, even though she was suffering. I did not trust in God's Will at that time, I was not to the point I am now, I was not at peace with everything, I was not ready for the Will of God to be done and I prayed for miracles. I prayed and told my Heavenly Father that I could not handle it if he took her from me. For I did not want to loose my baby and I believe he gave me that miracle I was asking for. I believe he allowed Payten the choice to stay and she loved us so much and had so much to share with us and the world that she chose to stay and shine her light for all to see. But I believe that choice of hers may be soon changing, for she is no longer as happy/pain free as she used to be, rather she is suffering and I want her to go home to her Heavenly Father if that is what she truly is experiencing and I told her that. I told her that I was okay with whatever she chose, that I would be okay if she chose to go back home to her Heavenly Father, where she would be free of all hardship and pain. Where she would be able to run free, play and laugh. Where she would transform into the beautiful butterfly she is. Every soul is great in the sight of God and Payten's is by far one of the most beautiful souls I have ever encountered and I am not just saying this because she is mine, rather I say it because it is true. Anyone who has met my Payten knows this. We all come to this earth to receive a body and to go through challenges, trials, etc. to be tested and learn life lessons that improve our spirituality and improve our souls as children of God to help us become more like he is. But Payten was not sent here for this reason, rather she was and is prefect already, she is already like God, she is indeed a Window to His Love.
I believe that she is going through all this for me to learn and grow. I truly believe that this is my families trial. I believe that Payten is here to teach us lessons that no one else could teach us and that she is doing a darn good job at it! I have hard time (at times) with this, because I know that all she really needed was to receive a body and then go home. No test was required for Payten. So as her mother, I have truly struggled with this, because it is my trial, I want her to not have to go through it for me to learn and grow. I have asked my Father in Heaven many times, to just give me the bitter cup, give me the challenges and heartaches she has to face, for it is not her test, but rather my test. And no matter how unfair it seems, the answers always comes that, it is not HIS will. He did not make Payten stay here and face these things, rather Payten chose this life. Payten knew what she would face and go through and she wanted to face it to help me grow and learn and become better because she loved me, her mother, so very much. So my prayer is that if this indeed is becoming a down hill slope that will just bring sorrow and strife for her, that she knows that it is okay, that she go home to heaven. I love her enough to say goodbye.
I know that she has been sicker at times in different hospitalizations, but this one is different, she's suffering more I believe than she has in previous admissions and she is not getting better as easily or as quickly as she has in the past and I believe it is going get harder and harder to treat illnesses that she faces. For we learned today that the antibiotic that she has been on for the past four days has done nothing to treat her infection, for it is a very extensive infection that is very resilient to treatment and there are only two antibiotics that it might respond to. The first choice which is the best choice is not an option because it increases her chances for seizures and the second choice was started this afternoon in hopes that it will treat the infection and clear it. We will see. Fingers crossed and prayers said that it will help heal the infection and bring comfort to our little girl. Today, we met with an Infectious Disease Control Doctor and he said that it is becoming harder and harder for Payten to be treated of her illnesses because she is becoming more and more resilient to antibiotics for she has required so many throughout her little life that they are loosing there effect. He went on to say that this is an infection that can spread easily to other areas of the body and to other people around her, so we want to try to treat it as aggressively as we can so that does not happen. He is also very interested as to what the Urologist will have to say, for he will play a big role in this, because since her last ultra sound of her kidney's, (which was a few months ago), the right side has enlarged and he wouldn't say what it could be, all he said is it could be a number of different things and the Urologist would be able to discuss with us in more detail after he is able to do his procedure called a VCUG, which is a scope that will go up inside her bladder and kidneys, to hopefully show exactly what is causing all of this. But this can not be done until the infection is cleared and the urine culture is negative. So when the Nurses and Hospitalist say, Oh she is doing so much better, she looks so much better, it is hard for me to agree. Yes, her color looks better and yes, there are times that she plays and interacts with us more, but I believe that is because they are able to control the fever somewhat and the pain, which is masking her appearance and making her look better, when in all reality she is not and that is where my concern lies.
I thank all of you for you thoughts and prayers, I believe they have truly helped everyone one of us involved, but we are still all still struggling and emotions are high. We have cried allot, even my children have cried, which they rarely do. An example of this was last night, Makenna cried herself to sleep after seeing Payten in the hospital. Makenna told me, Mom that is not my sister in there, she is different and I want my sister back! I want her to come home so I can play with her! And all I could say was I know Makenna I do too! What a heart wrenching moment that was, I just held her as she cried herself to sleep. All our hearts are breaking, even though we are in a good place and at peace.
Before I go, I wanted to share this song with you, it is Entitled A Window to His Love and every time I hear it I think of my Payten and her life and how she truly has been A Window to God's Love and that is why I have been so blessed to be her mother. Like I said before, I do not know her future, all I have is inspiration and feelings to go by and right now THEY are telling me to prepare myself for it is time, Payten is ready.
I want to be a window to His love,
so when you look at me you will see Him.
I want to be so pure and clear that you won't even know I'm here,
'cause His love will shine brightly through me.
I want to be a doorway to the truth,
so when you walk beyond you will find Him.
I want to stand so straight and tall, that you won't notice me at all.
But through my open door He will be seen.
A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become a window to His love.
I want to be a window to His love,
so you can look through me and you'll see Him.
And some day shining through my face, you'll see His loving countenance,
'cause I will have become like He is
A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become...
A window to His love
A doorway to the truth.
A bearer of the message He'd have me bring to you.
And with each passing year
I want to disappear
'Till He's become ev'rything
and I've become a window to His love
Much love, KIM MERRILL
I also feel that Payten has taken the opportunity to show her love for her family and friends, more so during this hospitalization then any other she has had, by hugging them and smiling at them when they have come to see her. Since she has been in the hospital these past four days, she has been in allot of pain and she has been extremely lethargic, but there have been moments and yes they are becoming more often everyday, where she will smile at someone and give them hugs and Eskimo kisses, which she rarely does even when she is well and my feeling behind this is that she is taking a moment to show them how much she has appreciated their love and service for her and is in her own little way saying her goodbyes to them. These too have been sweet moments in time that I will cherish and never forget. But with all these lovely moments come the hard and emotional moments of worrying and grief as well and that is where I believe no one will EVER fully understand the extent of what I am facing/going through/feeling and they won't because they are not living it.
They can evaluate the situation all they want, they can read about what I write, they can look at facts and at symptoms etc., but no one will ever feel what I feel as her mother. I worry that people think I am over reacting and I shouldn't, I should not care what others think. I know what my mother instinct has tole me, I know the experiences I have had in these past few days, and that maybe hard for some to understand, but they are real and I will not deny them. Maybe it is hard for others to believe/understand, because they are so personal and so sacred to me. And maybe I should not have shared them. But that is not who I am! Rather I am that person that wants to be as open and honest about everything in my life as I can and so I guess I am going to have critical people who look at me like I am doomsday and negative, but I will never deny what I feel at the moment I am feeling them. I still feel that Payten is fighting for her life right now, my gut is telling me she is very sick and even if she gets through this hospitalization, I have that deep down sick feeling that this will be just the beginning of a down hill slope that will just keep getting worse til the end. I know that sounds like I have given up, but I haven't! I love my daughter with all my heart, she is my life, my light and I have given up hope for her. Rather I want so badly to do all I can to keep her here and to take all these pains and sicknesses and challenges away, but I can't. I am not God and I believe in his will and relinquishing her life over to him for he will do what is best for her.
As Payten's mother,I do my part! I take her to therapies, I work on what they work on at home, we strive for her to sit, crawl, walk, talk, etc., but we also know that, that may not be God's plan for her and we have come to terms with that. I also take her to her different doctors appts. and I give her all the medications that are necessary to try to help her to the best of our ability and I watch her closely and I take her whenever she is sick and do all I can to make her better, but there will be a time that comes that it will not work, we will not be able to fix it, we will try to do all the different things and they will not work because it is not the Will of God. It may not be this time, but that time will come and I believe it is getting closer each day. I believe that her disorder is worsening, for it is a progressive disorder, yes, we are taking the measures needed to try to stop/slow the progression, but in all cases of her disorder the measures quit working and it progressively gets worse and that is where we are right now I believe. These are the feelings I am having, that the medications are losing there effects on Payten and that her disorder is worsening and because it is a progressive brain disease, I think it is self explanatory how it will end.
I was selfish at the beginning of Payten's life, I did not want to let her go, even though she was suffering. I did not trust in God's Will at that time, I was not to the point I am now, I was not at peace with everything, I was not ready for the Will of God to be done and I prayed for miracles. I prayed and told my Heavenly Father that I could not handle it if he took her from me. For I did not want to loose my baby and I believe he gave me that miracle I was asking for. I believe he allowed Payten the choice to stay and she loved us so much and had so much to share with us and the world that she chose to stay and shine her light for all to see. But I believe that choice of hers may be soon changing, for she is no longer as happy/pain free as she used to be, rather she is suffering and I want her to go home to her Heavenly Father if that is what she truly is experiencing and I told her that. I told her that I was okay with whatever she chose, that I would be okay if she chose to go back home to her Heavenly Father, where she would be free of all hardship and pain. Where she would be able to run free, play and laugh. Where she would transform into the beautiful butterfly she is. Every soul is great in the sight of God and Payten's is by far one of the most beautiful souls I have ever encountered and I am not just saying this because she is mine, rather I say it because it is true. Anyone who has met my Payten knows this. We all come to this earth to receive a body and to go through challenges, trials, etc. to be tested and learn life lessons that improve our spirituality and improve our souls as children of God to help us become more like he is. But Payten was not sent here for this reason, rather she was and is prefect already, she is already like God, she is indeed a Window to His Love.
I believe that she is going through all this for me to learn and grow. I truly believe that this is my families trial. I believe that Payten is here to teach us lessons that no one else could teach us and that she is doing a darn good job at it! I have hard time (at times) with this, because I know that all she really needed was to receive a body and then go home. No test was required for Payten. So as her mother, I have truly struggled with this, because it is my trial, I want her to not have to go through it for me to learn and grow. I have asked my Father in Heaven many times, to just give me the bitter cup, give me the challenges and heartaches she has to face, for it is not her test, but rather my test. And no matter how unfair it seems, the answers always comes that, it is not HIS will. He did not make Payten stay here and face these things, rather Payten chose this life. Payten knew what she would face and go through and she wanted to face it to help me grow and learn and become better because she loved me, her mother, so very much. So my prayer is that if this indeed is becoming a down hill slope that will just bring sorrow and strife for her, that she knows that it is okay, that she go home to heaven. I love her enough to say goodbye.
I know that she has been sicker at times in different hospitalizations, but this one is different, she's suffering more I believe than she has in previous admissions and she is not getting better as easily or as quickly as she has in the past and I believe it is going get harder and harder to treat illnesses that she faces. For we learned today that the antibiotic that she has been on for the past four days has done nothing to treat her infection, for it is a very extensive infection that is very resilient to treatment and there are only two antibiotics that it might respond to. The first choice which is the best choice is not an option because it increases her chances for seizures and the second choice was started this afternoon in hopes that it will treat the infection and clear it. We will see. Fingers crossed and prayers said that it will help heal the infection and bring comfort to our little girl. Today, we met with an Infectious Disease Control Doctor and he said that it is becoming harder and harder for Payten to be treated of her illnesses because she is becoming more and more resilient to antibiotics for she has required so many throughout her little life that they are loosing there effect. He went on to say that this is an infection that can spread easily to other areas of the body and to other people around her, so we want to try to treat it as aggressively as we can so that does not happen. He is also very interested as to what the Urologist will have to say, for he will play a big role in this, because since her last ultra sound of her kidney's, (which was a few months ago), the right side has enlarged and he wouldn't say what it could be, all he said is it could be a number of different things and the Urologist would be able to discuss with us in more detail after he is able to do his procedure called a VCUG, which is a scope that will go up inside her bladder and kidneys, to hopefully show exactly what is causing all of this. But this can not be done until the infection is cleared and the urine culture is negative. So when the Nurses and Hospitalist say, Oh she is doing so much better, she looks so much better, it is hard for me to agree. Yes, her color looks better and yes, there are times that she plays and interacts with us more, but I believe that is because they are able to control the fever somewhat and the pain, which is masking her appearance and making her look better, when in all reality she is not and that is where my concern lies.
I thank all of you for you thoughts and prayers, I believe they have truly helped everyone one of us involved, but we are still all still struggling and emotions are high. We have cried allot, even my children have cried, which they rarely do. An example of this was last night, Makenna cried herself to sleep after seeing Payten in the hospital. Makenna told me, Mom that is not my sister in there, she is different and I want my sister back! I want her to come home so I can play with her! And all I could say was I know Makenna I do too! What a heart wrenching moment that was, I just held her as she cried herself to sleep. All our hearts are breaking, even though we are in a good place and at peace.
Before I go, I wanted to share this song with you, it is Entitled A Window to His Love and every time I hear it I think of my Payten and her life and how she truly has been A Window to God's Love and that is why I have been so blessed to be her mother. Like I said before, I do not know her future, all I have is inspiration and feelings to go by and right now THEY are telling me to prepare myself for it is time, Payten is ready.
I want to be a window to His love,
so when you look at me you will see Him.
I want to be so pure and clear that you won't even know I'm here,
'cause His love will shine brightly through me.
I want to be a doorway to the truth,
so when you walk beyond you will find Him.
I want to stand so straight and tall, that you won't notice me at all.
But through my open door He will be seen.
A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become a window to His love.
I want to be a window to His love,
so you can look through me and you'll see Him.
And some day shining through my face, you'll see His loving countenance,
'cause I will have become like He is
A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become...
A window to His love
A doorway to the truth.
A bearer of the message He'd have me bring to you.
And with each passing year
I want to disappear
'Till He's become ev'rything
and I've become a window to His love
Much love, KIM MERRILL
Friday, April 6, 2012
Get your box of tissues, you may need them!
Today has been a whirl wind of emotions. It has been one of those times I was describing in a few posts back about not knowing what to expect for Payten and the worry that goes with it. This morning at 2:45 I awoke to Payten's vent going off, which is not unusal in our house, but when I went over to check on her, to either hook the vent back up or turn it off, I notice that Payten was crying, which is not usual for her and it was not a normal cry either, it was a cry of sorrow and pain. So I stood there for a bit and rubbed her hair and told her everything was okay, that mommy was there and that I loved her, then I gave her a toy and went back to bed, not really thinking much of it, just sad that she was sad. Anyways, as I laid there in bed trying to go back to sleep, I had the most over whelming feeling of warmth, yet cool, calm, and peaceful come over me, a feeling I have never experienced before regarding Payten and then a voice or thought came to me that said, Prepare yourself, for it is time. At first I thought that's weird? What is time? And I kind of dismissed it. But then about an hour later, I awoke to Payten's machines going off again, this time it was her oxygen level and her heart rate. When I got over to check on her, she was crying even harder, but this time she was burning up and the feeling came again, still peaceful, but with a little more urgency than before, basically saying don't ignore me, prepare yourself, for it is time. That is when I truly became concerned and ran and got the thermometer and found that Payten's fever was 105.6.
I was beside myself, I did not know what to think, I tried calling my husband, but there was no answer, I tried calling others and phones were off, I finally reached a dear friend who said we could bring the other kids over to them. So I quickly got ready and while getting ready I was able to reach Joseph and clue him in on what was happening. Once we got to the hospital, she looked even worse, her color was a pale/grey at times and then others bright red and she looked to be having trouble breathing, her temperature was still super high 104.8 and she just cried. I was in shock, I didn't know what to think. Here I was having this feeling deep down in my soul, that was peaceful, but worry some, that my daughter was dying and I wasn't emotional. I was calm and collected, I was in denial. It was not until we got up to the ICU that it sort of hit, because it still has not fully hit, and she was lying there in the hospital bed lifeless, frail, crying in her sleep, so pale she blended with the pillow case, unresponsive to anyone and anything, that I knew this might be it. This might be the last visit to the hospital. Payten may never see home again. But I still kept thinking to myself, no, I have had these feelings before, yet they were different, they were more of panic attacks, that she would not make it and she did, so therefore it is all in my head, Payten is going to pull through, but deep down I knew that I was lying to myself for I truly did not believe this. (I still could eat these words, Payten might pull through and be fine and how happy I will be if she does, I am just expressing to you the actual feelings I was having today. So don't think I have thrown in the towel and given up, because I haven't! It is not over, til it's over.) Rather I knew she was truly suffering, suffering I believe she has not faced before. For everytime Payten would awake, she was not my happy Payten, rather she was this frail little girl, who would look at me with eyes of sorrow and pain, pleading to me, to come and help her, to come and take this pain from her and I couldn't. All I could do is stand there helpless, yearning for the strength to get through this.
As this went on, I thought of this time of year, Easter and I thought of Our Savior Jesus Christ and of his Attonement and how much he suffered while attoning for our sins and I thought about his pleads to his father to take this bitter cup from him and I truly understood how God the Father must of felt right at that moment. Here was his Son, who he loved dearly suffering beyond belief and pleading for it to end and all The Father could do is stand by helpless, watching and waiting for it to end. That is me right now, I am standing helpless, watching and waiting for the suffering to end. I don't want this for my daughter, I don't want her to be in pain, but I don't have control over it, it is out of my hands. All I can do is stand by and hold her and rock her and love her and pray that the pain subsides and whatever the Father's will be, that it be done. For I do not know how much longer I can face the agony in Paytens eyes, the tears that roll down her cheeks while she is sleeping. I just want my happy Payten back! I want her to get better, but she will NEVER get better fully, she will always be sick, maybe not hospital sick, but still sick and I think is it worth it? Is my selfish desire to not let go, worth it? Can I not just wait to see her again? Can I not just let go and let her return home to her Father in Heaven where she will be happy and where one day I will be reunited with her? Why is it so hard? Why do I feel so bad and guilty for thinking any of this, I don't fully understand and I never will. All I know is I want what is best for Payten. Right now I don't know what that is. Right now I don't know if she will be coming home with me and that scares me. It is so hard to know how to feel because it is the unknown.
I left the hospital with a heavy heart. It was hard to leave her, for I was worried with the question running through my head, what if something happens to her and I am not there? That is my biggest fear, I don't think I could live with myself if that ever happened or forgive myself for that matter. But something happened when I got home that I want to share, I was talking with a friend and she mentioned to me that while talking to Zachary and her son's teacher, the teacher mentioned that Zachary for the past week or so has been having a hard time at school. She went on to say that he seemed to be sad and anxious having a hard time concentrating, so when I got off the phone, I called Zach in to talk with him about it. I asked him how he had been feeling about Payten. This is what he said, Mom, I have been really worried about her, something is just not right. It started last week. I have just had a bad feeling, that is why I have been trying to spend so much time with her and that is why whenever I get a chance I tell her I love her. Mom, on Monday, I had a feeling that she was going to be going to the hospital and that while in the hospital something bad was going to happen. I asked what he meant by bad? And he said with tears streaming down his face, I don't know, just something bad. Then I told him to come here and we hugged for a minute while I whispered in his ear that it was okay to be sad. I told him that I was sad too, then I had the impression to express to him how I was feeling, a talk no mother of a nine year old wants to have to give. I told him that Payten was very sick and that she probably would not be coming home. He started to cry even harder and I looked him in the eyes and said, Zachary do you know this is not the end? Do you believe that Payten will live again? Do you believe that she will go to live with her Father in Heaven and when it is time you will see her again? He said, Yes, Mom I do. I said, that good, because it is true. Then I asked him to pray for Payten, which he said he would and I told Zachary not to say the normal get well prayer, but rather, I needed him to pray that Payten's pain would subside and that if it is her time to go to Heavenly Father that she would go and with tears in his eyes he said, That will be hard, but I will do it because I love her! What a bitter sweet moment that was. A tender mercy in my life that I will never forget, for my nine year old son was stronger than me right at that moment!
So when you ask me if I am okay or how I am feeling and I say, IDK, or Okay, it is because I don't know what to say. I don't know how to feel, because I could walk into that hospital room and find Payten happy and healthy tomorrow. That is what I mean when I say Payten's life is an emotional roller coaster, because one minute she can be on her death bed and the next she is fine. So understand, I am not trying to cover up my emotions, I am not trying to put up a strong front, I am just being honest. I do not know what the future holds for my sweet Payten. All I know is that she is not well right now, she is fighting for her life, she is suffering from pain and I just want it to be over for her. I thank every person who has prayed for Payten, myself and my family, you will not believe the help it is to us, the strength it gives us, so when you think how can I help? Just get on your knees and pray, pray that the will of God be done and that Payten is happy again. I love you all and I hope this gives you a little better insight to what I am going through/feeling. Sometimes it is hard for me to talk, but I can express my feelings through words, that is why I am grateful for this blog. God bless each of you this day. Much Love, KIM MERRILL
I was beside myself, I did not know what to think, I tried calling my husband, but there was no answer, I tried calling others and phones were off, I finally reached a dear friend who said we could bring the other kids over to them. So I quickly got ready and while getting ready I was able to reach Joseph and clue him in on what was happening. Once we got to the hospital, she looked even worse, her color was a pale/grey at times and then others bright red and she looked to be having trouble breathing, her temperature was still super high 104.8 and she just cried. I was in shock, I didn't know what to think. Here I was having this feeling deep down in my soul, that was peaceful, but worry some, that my daughter was dying and I wasn't emotional. I was calm and collected, I was in denial. It was not until we got up to the ICU that it sort of hit, because it still has not fully hit, and she was lying there in the hospital bed lifeless, frail, crying in her sleep, so pale she blended with the pillow case, unresponsive to anyone and anything, that I knew this might be it. This might be the last visit to the hospital. Payten may never see home again. But I still kept thinking to myself, no, I have had these feelings before, yet they were different, they were more of panic attacks, that she would not make it and she did, so therefore it is all in my head, Payten is going to pull through, but deep down I knew that I was lying to myself for I truly did not believe this. (I still could eat these words, Payten might pull through and be fine and how happy I will be if she does, I am just expressing to you the actual feelings I was having today. So don't think I have thrown in the towel and given up, because I haven't! It is not over, til it's over.) Rather I knew she was truly suffering, suffering I believe she has not faced before. For everytime Payten would awake, she was not my happy Payten, rather she was this frail little girl, who would look at me with eyes of sorrow and pain, pleading to me, to come and help her, to come and take this pain from her and I couldn't. All I could do is stand there helpless, yearning for the strength to get through this.
As this went on, I thought of this time of year, Easter and I thought of Our Savior Jesus Christ and of his Attonement and how much he suffered while attoning for our sins and I thought about his pleads to his father to take this bitter cup from him and I truly understood how God the Father must of felt right at that moment. Here was his Son, who he loved dearly suffering beyond belief and pleading for it to end and all The Father could do is stand by helpless, watching and waiting for it to end. That is me right now, I am standing helpless, watching and waiting for the suffering to end. I don't want this for my daughter, I don't want her to be in pain, but I don't have control over it, it is out of my hands. All I can do is stand by and hold her and rock her and love her and pray that the pain subsides and whatever the Father's will be, that it be done. For I do not know how much longer I can face the agony in Paytens eyes, the tears that roll down her cheeks while she is sleeping. I just want my happy Payten back! I want her to get better, but she will NEVER get better fully, she will always be sick, maybe not hospital sick, but still sick and I think is it worth it? Is my selfish desire to not let go, worth it? Can I not just wait to see her again? Can I not just let go and let her return home to her Father in Heaven where she will be happy and where one day I will be reunited with her? Why is it so hard? Why do I feel so bad and guilty for thinking any of this, I don't fully understand and I never will. All I know is I want what is best for Payten. Right now I don't know what that is. Right now I don't know if she will be coming home with me and that scares me. It is so hard to know how to feel because it is the unknown.
I left the hospital with a heavy heart. It was hard to leave her, for I was worried with the question running through my head, what if something happens to her and I am not there? That is my biggest fear, I don't think I could live with myself if that ever happened or forgive myself for that matter. But something happened when I got home that I want to share, I was talking with a friend and she mentioned to me that while talking to Zachary and her son's teacher, the teacher mentioned that Zachary for the past week or so has been having a hard time at school. She went on to say that he seemed to be sad and anxious having a hard time concentrating, so when I got off the phone, I called Zach in to talk with him about it. I asked him how he had been feeling about Payten. This is what he said, Mom, I have been really worried about her, something is just not right. It started last week. I have just had a bad feeling, that is why I have been trying to spend so much time with her and that is why whenever I get a chance I tell her I love her. Mom, on Monday, I had a feeling that she was going to be going to the hospital and that while in the hospital something bad was going to happen. I asked what he meant by bad? And he said with tears streaming down his face, I don't know, just something bad. Then I told him to come here and we hugged for a minute while I whispered in his ear that it was okay to be sad. I told him that I was sad too, then I had the impression to express to him how I was feeling, a talk no mother of a nine year old wants to have to give. I told him that Payten was very sick and that she probably would not be coming home. He started to cry even harder and I looked him in the eyes and said, Zachary do you know this is not the end? Do you believe that Payten will live again? Do you believe that she will go to live with her Father in Heaven and when it is time you will see her again? He said, Yes, Mom I do. I said, that good, because it is true. Then I asked him to pray for Payten, which he said he would and I told Zachary not to say the normal get well prayer, but rather, I needed him to pray that Payten's pain would subside and that if it is her time to go to Heavenly Father that she would go and with tears in his eyes he said, That will be hard, but I will do it because I love her! What a bitter sweet moment that was. A tender mercy in my life that I will never forget, for my nine year old son was stronger than me right at that moment!
So when you ask me if I am okay or how I am feeling and I say, IDK, or Okay, it is because I don't know what to say. I don't know how to feel, because I could walk into that hospital room and find Payten happy and healthy tomorrow. That is what I mean when I say Payten's life is an emotional roller coaster, because one minute she can be on her death bed and the next she is fine. So understand, I am not trying to cover up my emotions, I am not trying to put up a strong front, I am just being honest. I do not know what the future holds for my sweet Payten. All I know is that she is not well right now, she is fighting for her life, she is suffering from pain and I just want it to be over for her. I thank every person who has prayed for Payten, myself and my family, you will not believe the help it is to us, the strength it gives us, so when you think how can I help? Just get on your knees and pray, pray that the will of God be done and that Payten is happy again. I love you all and I hope this gives you a little better insight to what I am going through/feeling. Sometimes it is hard for me to talk, but I can express my feelings through words, that is why I am grateful for this blog. God bless each of you this day. Much Love, KIM MERRILL
Wednesday, April 4, 2012
Exciting News!!!! ( Well I guess it's exciting!)
Before I get into our exciting news announcement, I could not help but share this adorable photo of Emmett! For two months now Emmett has been eating Solid foods and he loves it! He has a love affair with food and this pictures shows it! I was in the kitchen cleaning and came into the family room and found Emmett like this....
The face says it all! This is so priceless, I just had to share! I hope you got a good laugh like I did! LOL!
Now for the exciting news! I guess it is exciting for some in our house, maybe not me necessarily, but most of the Merrill home is excited! We have a new addition to our family and his name is SAMMY, Sammy the Snake, Here is a picture of Sammy......
I know, I know, a snake, really? What were you thinking?! Honestly I don't know what I was thinking, I guess the begging and pleading finally got to me, along with this cute face.....
Seriously?!, Look at that face! And look at that Smile! How could a Mother say no to that! I agree Snakes are icky, but it made my Zachary so happy and that is priceless! So even though it is going to take Mom time getting use to this little bugger, he is still the newest member of our family and we love him! We are sad to say that in order to get Sammy the Snake, we had to release our Turtles of four years, George and Susan, into the wild (Dobson Lake) with all their turtle friends, it was a bitter sweet moment! Zach was sad to say goodbye to his dear friends, but happy to welcome his new friend Sammy! It is kind of a nice change, we replaced a 40 gallon Aquarium, with a 10 gallon one! Can we say more room for our small house, that makes for a Happy Mommy! So again even though I may not like Snakes, I like the room that it has freed up and this guy is kind of growing on me! That is until he has to eat!!!!! LOL! That's it, our exciting news announcement! Thanks for reading! Before I go, here's a picture of Sammy's home.....
Now for the exciting news! I guess it is exciting for some in our house, maybe not me necessarily, but most of the Merrill home is excited! We have a new addition to our family and his name is SAMMY, Sammy the Snake, Here is a picture of Sammy......
Tuesday, April 3, 2012
Blogging Again! LOL!
Wow! It has been a year and half since I posted on this blog, oops sorry! My life has just gotten away from me and I didn't take the time to blog, I wish I had, but why live life with regrets, rather I am going to starting anew and hopefully be better about my blogging! I decided to change the blog a little. I set this blog up originally to help me cope, to allow me somewhere I could go to release my feelings/emotions that I face as a mother of a child with special needs. And that was great! It really did help, but I found myself at times not knowing what to write and so I decided that this blog would not only serve that purpose, but it would also highlight all the other events in my life as well, whether it be Payten or someone else in the family, it would just be a place I could go to brag, to share thoughts and concerns, vent emotions, tell a funny story, whatever it was that day or week that I felt like sharing and so here it goes! This might be a long post because I will be playing a little catch up with you all!!!!! Enjoy!
Today, I was talking with Payten's Occupational Therapist about life and how challenging it is to mother a child such as Payten. It was nice to chat with someone who understood little bit of the emotional roller coaster I face on a daily basis. I shared with her how it is a daily struggle emotion wise being the mother of a chronically sick child who has special needs, because you live day to day not knowing what the next day, hour, or minute will bring. Such as, every time I take Payten to the doctor or she gets admitted to the hospital, I always have that question in the back of my mind, will this be our last time we see this doctor or will I be bringing Payten home from this hospital stay? Is this my last day that I have to spend with my Payten? And as much as you try to dismiss these thoughts, they remain there. You try so hard not to ponder on them too much, because you don't want that mental break down, but there are always those days that the thoughts become to much to handle or push away and those are the days, you do break down and cry and that is okay, that is good, we as mothers need to do this, it is a healthy thing and once you are finished with you mini-emotional breakdown, you pick up the pieces and move on, grasping to hope. The hope for a better tomorrow, the hope that no matter what happens, I will be strong enough to endure, the hope that God knows and loves me, the hope and faith that there is indeed a life after this and so therefore this life is not the end. There are days that I wake up scared to death, because I had a dream that felt too real about Payten dying and before I get up to check on her, I say a mini-prayer that whatever I find, whatever state Payten is, that I will be okay. It is a heart wrenching emotional roller coaster that I live daily and it truly was great to express to someone who comprehended somewhat of how I feel. Thank you Miss Terry for being that listening ear today and allowing me to share such a personal part of myself and my life.
Since I blogged last, like I said, Life has been insane! So much has happened. The year 2011, was the year from HELL! Excuse my language, but it was! We did get to spend Christmas as a family in 2010, which was an amazing gift! It was the best Christmas gift I received that year! Then 2011 hit and I literally think the Merrill home entered HELL! Payten went into the hospital right at the beginning of the year, for the same old, same old, respiratory distress issues she always seems to have and no that is not the HELL I am talking about!!!! A few weeks later, I found out I was pregnant with my fourth child. Holy Crap! What a whirl wind of emotion that was. I have never cried so hard in my life! I wanted him, but then I didn't want him and I went through guilt for even having that feeling go through me. It was a really hard time in my life, we were preventing from having kids and here I was pregnant! This goes to show that this pregnancy was a big accident, that scared both myself and my husband, because it was still unknown whether Payten's Neurological issues were genetic or not, so we didn't know if this would be something that future children could suffer from and how on earth would I care for two special needs children, so that is why we were preventing and that is why I was so upset when I found out that the Lord had other plans for me! I have never been more upset and excited all rolled into one! I can honestly say that Emmett Joseph Merrill is one of the greatest blessings I have and I would not ever change that! I will admit, it was scary, I worried the whole nine months, I worried up until he was born and placed in my arms so I could see for sure that he was healthy and strong, which is what happened and how grateful I was for that! Here laid a beautiful healthy baby boy! But oh how scared I was too, for how was I going to handle caring for him and Payten, let alone Zach and Makenna! I had a moment of WHAT THE HELL DID I JUST GET MYSELF INTO!!!!! LOL!
But, that is only a piece of the emotional and physical HELL that I face in 2011! The Last week in January 2011, one of my biggest fears became reality, getting hurt to the point of not being able to care for Payten or my other children, yep that was one of my biggest fears and yes it came to be reality, I broke my right foot. It was horrible. It was on a Wednesday morning, we were running late to get to Payten's Physical Therapy apt. and while I was carrying Payten, she threw herself back to the point of almost falling out of my arms and I stumbled trying to keep her from falling and twisted and broke my foot and when I say broke, I mean broke! I broke both tips off of my lower leg bones and shattered my ankle completely. It was awful. I cringe just thinking about it. Here I was, all alone, no one around to help me or see what happened and here was my baby who just fell out of my arms now rolling down the driveway toward the street and I had no way of getting to her, except army crawling and that is what I did! I army crawled to Payten, picked her up and army crawled back to my car, where I got my cell phone and called a friend to come and help me. After all this was done, the neighbor FINALLY came out and saw me and was able to help. I have never in my life felt more helpless, than I did at that moment. After one week in the hospital and one surgery, I was able to come home and pretty much sit helpless for the next three months. And for those of you who know me, that was pure HELL, I have a hard time not being in control and I have a hard time accepting help and here was a situation where I was not in control and I had to accept all the help I could get because I was helpless and I had a daughter who is 100% care! UGH! What a great and valuable lesson I was taught. It was something that I will never forget and I am grateful to every single person who helped me during my time of need. It truly was a bitter sweet blessing in my life. After about six months and physical therapy, I was walking pretty well and getting back to my normal routine! Then I had my beautiful baby boy and life got turned upside down all over again, it was hard at first juggling a baby and a three year old with special needs who is full care, just like an infant, but I did it! Oh how proud I am to say I did it and am still doing it and I am happy to say it is getting easier everyday! Shortly after having Emmett I started having gall bladder issues and had to have my gall bladder removed, yes, you heard right, another surgery and that was not the last, a month after gall bladder surgery, I went in and had to have all my hardware that was in my foot and leg removed! It was insane, but I got through it, not without help, but through it just the same! Even though I say 2011 was the year from HELL, it was a good year. It was a year of growth and a year of strength for me and my family. I believe that I learned so much about myself and about others that year and I believe my husband and I became closer and learned what it truly meant to be a team and to work together as one! So even though we walked through HELL, it was a good refiners fire, that I would do all over again! I know that sounds crazy, but I would, I would do it, just to learn the lessons I learned! For they are life lessons that I will use forever and that I will cherish always!
Now that you are sort of caught up on the Crazy life of the Merrill clan, I will move on!!!! Payten is doing pretty well these days, she is progressing in some areas and digressing in others, but that is how it goes. She will take one step forward and two steps back! She is now able to sit on her own, without assistance for about 2 to 2 1/2 mins. That may sound like nothing, but to us that is HUGE! It was something we NEVER imagined we would see and we are seeing it, even if it is for only 2 minutes! She is also working on walking in a gait trainer, she still has yet to walk, but she is doing well, she has taken a few steps here and there, so we just keep putting her in it, in hopes that one day it will click and she will take off walking. Her health is fair. She seems to be doing okay respiratory wise, but Neurological, I am not sure, she is suffering from more seizures and she has been having episodes where she goes yellow, so my worry is that her liver is malfunctioning, but we will do testing to see if that is really the case. She has had some other strange, unexplainable things happen lately that are concerning me, but we will see what the doctors say, as for now, she is good. She is happy and she is loved. What more could she need or want! I am pleased to say that her hospitalizations are becoming fewer in numbers and shorter in length! She loves being a big sister! It is fun to watch her and Emmett play, she is usually not gentle with things, but when it comes to him, she usually is, it is fascinating to watch! Payten's older brother Zachary is her biggest fan, he loves her so much. He cares for her every need! He cheers her on when we are working with her during therapies and there are moments that I believe he has no idea I am watching, where he just sits there and so holds her while either singing or talking with her and he tells her how much he loves her and that he hopes that she gets better. It is one of the sweetest things a mother could ever witness. So that is my first post for 2012, I hope that I can keep up on this blogging thing!, better than I have in the past and I hope you enjoyed reading this post!
Today, I was talking with Payten's Occupational Therapist about life and how challenging it is to mother a child such as Payten. It was nice to chat with someone who understood little bit of the emotional roller coaster I face on a daily basis. I shared with her how it is a daily struggle emotion wise being the mother of a chronically sick child who has special needs, because you live day to day not knowing what the next day, hour, or minute will bring. Such as, every time I take Payten to the doctor or she gets admitted to the hospital, I always have that question in the back of my mind, will this be our last time we see this doctor or will I be bringing Payten home from this hospital stay? Is this my last day that I have to spend with my Payten? And as much as you try to dismiss these thoughts, they remain there. You try so hard not to ponder on them too much, because you don't want that mental break down, but there are always those days that the thoughts become to much to handle or push away and those are the days, you do break down and cry and that is okay, that is good, we as mothers need to do this, it is a healthy thing and once you are finished with you mini-emotional breakdown, you pick up the pieces and move on, grasping to hope. The hope for a better tomorrow, the hope that no matter what happens, I will be strong enough to endure, the hope that God knows and loves me, the hope and faith that there is indeed a life after this and so therefore this life is not the end. There are days that I wake up scared to death, because I had a dream that felt too real about Payten dying and before I get up to check on her, I say a mini-prayer that whatever I find, whatever state Payten is, that I will be okay. It is a heart wrenching emotional roller coaster that I live daily and it truly was great to express to someone who comprehended somewhat of how I feel. Thank you Miss Terry for being that listening ear today and allowing me to share such a personal part of myself and my life.
Since I blogged last, like I said, Life has been insane! So much has happened. The year 2011, was the year from HELL! Excuse my language, but it was! We did get to spend Christmas as a family in 2010, which was an amazing gift! It was the best Christmas gift I received that year! Then 2011 hit and I literally think the Merrill home entered HELL! Payten went into the hospital right at the beginning of the year, for the same old, same old, respiratory distress issues she always seems to have and no that is not the HELL I am talking about!!!! A few weeks later, I found out I was pregnant with my fourth child. Holy Crap! What a whirl wind of emotion that was. I have never cried so hard in my life! I wanted him, but then I didn't want him and I went through guilt for even having that feeling go through me. It was a really hard time in my life, we were preventing from having kids and here I was pregnant! This goes to show that this pregnancy was a big accident, that scared both myself and my husband, because it was still unknown whether Payten's Neurological issues were genetic or not, so we didn't know if this would be something that future children could suffer from and how on earth would I care for two special needs children, so that is why we were preventing and that is why I was so upset when I found out that the Lord had other plans for me! I have never been more upset and excited all rolled into one! I can honestly say that Emmett Joseph Merrill is one of the greatest blessings I have and I would not ever change that! I will admit, it was scary, I worried the whole nine months, I worried up until he was born and placed in my arms so I could see for sure that he was healthy and strong, which is what happened and how grateful I was for that! Here laid a beautiful healthy baby boy! But oh how scared I was too, for how was I going to handle caring for him and Payten, let alone Zach and Makenna! I had a moment of WHAT THE HELL DID I JUST GET MYSELF INTO!!!!! LOL!
But, that is only a piece of the emotional and physical HELL that I face in 2011! The Last week in January 2011, one of my biggest fears became reality, getting hurt to the point of not being able to care for Payten or my other children, yep that was one of my biggest fears and yes it came to be reality, I broke my right foot. It was horrible. It was on a Wednesday morning, we were running late to get to Payten's Physical Therapy apt. and while I was carrying Payten, she threw herself back to the point of almost falling out of my arms and I stumbled trying to keep her from falling and twisted and broke my foot and when I say broke, I mean broke! I broke both tips off of my lower leg bones and shattered my ankle completely. It was awful. I cringe just thinking about it. Here I was, all alone, no one around to help me or see what happened and here was my baby who just fell out of my arms now rolling down the driveway toward the street and I had no way of getting to her, except army crawling and that is what I did! I army crawled to Payten, picked her up and army crawled back to my car, where I got my cell phone and called a friend to come and help me. After all this was done, the neighbor FINALLY came out and saw me and was able to help. I have never in my life felt more helpless, than I did at that moment. After one week in the hospital and one surgery, I was able to come home and pretty much sit helpless for the next three months. And for those of you who know me, that was pure HELL, I have a hard time not being in control and I have a hard time accepting help and here was a situation where I was not in control and I had to accept all the help I could get because I was helpless and I had a daughter who is 100% care! UGH! What a great and valuable lesson I was taught. It was something that I will never forget and I am grateful to every single person who helped me during my time of need. It truly was a bitter sweet blessing in my life. After about six months and physical therapy, I was walking pretty well and getting back to my normal routine! Then I had my beautiful baby boy and life got turned upside down all over again, it was hard at first juggling a baby and a three year old with special needs who is full care, just like an infant, but I did it! Oh how proud I am to say I did it and am still doing it and I am happy to say it is getting easier everyday! Shortly after having Emmett I started having gall bladder issues and had to have my gall bladder removed, yes, you heard right, another surgery and that was not the last, a month after gall bladder surgery, I went in and had to have all my hardware that was in my foot and leg removed! It was insane, but I got through it, not without help, but through it just the same! Even though I say 2011 was the year from HELL, it was a good year. It was a year of growth and a year of strength for me and my family. I believe that I learned so much about myself and about others that year and I believe my husband and I became closer and learned what it truly meant to be a team and to work together as one! So even though we walked through HELL, it was a good refiners fire, that I would do all over again! I know that sounds crazy, but I would, I would do it, just to learn the lessons I learned! For they are life lessons that I will use forever and that I will cherish always!
Now that you are sort of caught up on the Crazy life of the Merrill clan, I will move on!!!! Payten is doing pretty well these days, she is progressing in some areas and digressing in others, but that is how it goes. She will take one step forward and two steps back! She is now able to sit on her own, without assistance for about 2 to 2 1/2 mins. That may sound like nothing, but to us that is HUGE! It was something we NEVER imagined we would see and we are seeing it, even if it is for only 2 minutes! She is also working on walking in a gait trainer, she still has yet to walk, but she is doing well, she has taken a few steps here and there, so we just keep putting her in it, in hopes that one day it will click and she will take off walking. Her health is fair. She seems to be doing okay respiratory wise, but Neurological, I am not sure, she is suffering from more seizures and she has been having episodes where she goes yellow, so my worry is that her liver is malfunctioning, but we will do testing to see if that is really the case. She has had some other strange, unexplainable things happen lately that are concerning me, but we will see what the doctors say, as for now, she is good. She is happy and she is loved. What more could she need or want! I am pleased to say that her hospitalizations are becoming fewer in numbers and shorter in length! She loves being a big sister! It is fun to watch her and Emmett play, she is usually not gentle with things, but when it comes to him, she usually is, it is fascinating to watch! Payten's older brother Zachary is her biggest fan, he loves her so much. He cares for her every need! He cheers her on when we are working with her during therapies and there are moments that I believe he has no idea I am watching, where he just sits there and so holds her while either singing or talking with her and he tells her how much he loves her and that he hopes that she gets better. It is one of the sweetest things a mother could ever witness. So that is my first post for 2012, I hope that I can keep up on this blogging thing!, better than I have in the past and I hope you enjoyed reading this post!
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