Breathing, the definition of breathing is to inhale and exhale air naturally and freely, to be alive! What a beautiful thing breathing is! It is something that we don't really have to think about, it just happens. Therefore it is something that is taken for granted, because it comes so naturally for us. But what happens when it becomes unnatural for us? What happens when it doesn't flow freely? What then? Most people have never had to think about this, because most people have never struggled to get a breath. Most people have walked through life breathing naturally and freely whenever and however they feel it to be necessary. Unfortunately, our daughter Payten is one that has not been granted this luxury, rather she has struggled from the moment she took her first breath and so for her may always be a struggle.
Recently, Payten was decanulated, meaning she had her trach taken away. As much as it was a joyous moment in our lives, for it symbolized strength and growth and advancement in development, etc., it was also a scary moment because of what the trach was. Before Payten had her tracheotomy, she could hardly breathe. Every breath she took was a miracle because of how hard it was. She slept all the time because she exerted all of her energy towards breathing. Her heart rate was in the mid two hundreds because she was so labored in her breathing that it caused everything else to be labored. Therefore when she had her tracheotomy placed, it was a sense of relief because now we had assurance that our daughter could breathe, both freely and naturally (well naturally for her!). Even though it was scary at first to accept something so foreign as the trach was, it brought so much peace because our daughter could now LIVE and have energy for other things than just breathing. It opened doors of opportunity for her in ways nothing else could. Yes, it limited her in areas of life, but the pros out weighed the cons at this stage in her young life. So instead of us focusing on all the negatives, we focused on what it opened up for our child and the help it provided her. We focused on the blessings it gave.
There is so much involved when dealing with a trach. There is suctioning, oxygen requirements, trach changes, etc. and there is a lot of equipment that comes with it too. It can make it difficult to travel, but you get use to all of the extra things and details that come with it. You get into a groove and it becomes part of you. It becomes your normal and you start living as though this is how everyone else lives. Then your child starts to become bigger and stronger, able to breathe a little easier and you begin to question if the trach is necessary. Your child starts pulling it out all the time and fights you on putting it back in. You start developing a HATE for this little device, that use to be such a blessing, because now you are having to use all your time and energy into keeping it in! So you start hounding the Doctors and questioning them on if it is necessary or not? Until they finally decide, yeah, she should be fine with out it. And you are ecstatic because now your child can breathe on their own, your child can be like everyone else when it comes to breathing! You think about how easy it is going to be not having to suction all the time, not having to wake up during the night and put oxygen back on or hook the vent back up, not having so much to pack up just to go pick the other kids up from school, etc. You think about how awesome it is going to be to hear her voice and her cry and you think, ya! she is going to be able to go swimming and take baths, etc., but you forget one thing, you forget what it was like for her before the trach. You forget, that breathing was NEVER a natural thing. You forget how much help the trach actually gave.
I didn't fully understand what Payten's ENT Doctor meant when he said, You soon will miss the trach. I thought he was just giving me a hard time. But now I understand his words. At first, Payten did really well, no real struggle, she kept her O2 up and she seemed to be able to cough things up okay. It seemed to be easy peasy for her and I thought, WOW! this is awesome! My daughter is doing it! She can breathe! Yessss! But what I didn't realize was that she still had an open stoma, meaning her hole where her trach resided was still open, she could still breathe through it. Yes, it was harder to do, but she still had it there to use, which made breathing for her a little easier. Now a week has gone by, it has become a little harder and why wouldn't?! Breathing has never been easy, why would it be easy now? As the stoma/hole closes, Payten is having to work a little harder, she is having to learn to breathe on her own and for her that is still hard to do. Even though she is strong enough to do so, it is hard.
Let's think of it this way, let's think of bike riding and learning how to ride a bike. At first you can't just ride a bike, you have to grow, you have to development other abilities such crawling, walking, talking etc. before you can jump on a bike and go. Once you are big enough and strong enough, you still can't just hop on a bike and go! There is a process, you first have to have training wheels and even with training wheels it is scary and there are times you will fall. Then you become confident and strong with those training wheels on, to the point that you ride as well as someone without training wheels and you get to a point where you no longer need those training wheels or want those training wheels on! So you remove the training wheels and as bad as you want to just hop on that bike and go, you can't! Why? Why can't you? You are strong enough, you have been riding a bike for sometime now, why can't you just go and be great at it from the start? Why, because now you are having to do it on your own, now you have nothing helping you, now there is nothing but you keeping yourself up. You are having to learn how to balance and turn and keep the bike straight while peddling and that is hard! That takes time and practice, it doesn't just happen over night. That is where Payten is. We have taken her training wheels away and though she is strong enough and ready, it is still hard. It will be sometime before she is good at breathing on her own. It is going to take a lot of practice and support, but eventually she will get there.
Last night, was a night where I missed her trach! I missed everything it gave her! I missed being able to hook oxygen up to it, I missed being able to suction it, etc. Payten was struggling to keep her saturation's up and she needed oxygen, but Payten would not let us put oxygen on her. Payten is not use to having anything on her face, therefore she hates the oxygen mask and nose cannula's, but what other choice do we have when she is struggling like she this? None. We have no other choice but an oxygen mask or nasal cannula's and when she needs it, she needs it! So it was a HUGE struggle to keep her from tugging on these different things that we were trying to place on her face. A struggle Joseph and I were losing, but couldn't give in or up on! So we had to hold the oxygen mask there until she was asleep enough for us to place by it her and that still was not enough, we kept having to get up and adjust the mask according to where she had moved, etc. It was very tiring and hard, but we had no other choice, we had to do it for our daughter. I kept thinking to myself, oh gosh! She is not ready, she can not do this, we need the trach back in, but it was too late! The stoma has closed and it would now require surgery, which I am not willing to do, unless it is ABSOLUTELY necessary. All these thoughts and emotions sent this Momma into a huge break down/sobbing fest, thinking that I was a horrible mother, who had made a horrible mistake for her child and because of that mistake, that child was now suffering the consequences!
I ultimately at that moment, forgot about the process. I forgot about how in life there is always a storm before there is a rainbow. I forgot that there is always struggle before there is strength. So even though she is struggling now, meaning she is needing oxygen at night and having a hard time handling her secretions, the time will come where she will not need this support, the time will come when she will no longer struggle. For she will have had enough time and practice that she will be able to breathe on her own! I just need to be patient and strong and helpful and supportive, while she is learning/going through this difficult process of breathing. I need to remember that it is okay that the trach is gone, I need to remember that she is strong enough to this, I need to remember that she just needs time to learn and that I am the one who has to help her through this learning process. I need to stand by her and hold oxygen up to her when she does not want it held up to her, etc. I have to be her rock right now while she still struggles to breathe without her training wheels, aka her trach!
Does it mean I may not sleep right now, yes. Does it mean I may lack energy, yes! Does it mean I may be an emotional wreck for a short time, yes! But in the end it will be worth it! In the end her breathing will be as natural as yours and mines breathing is! It is just going to take time and getting use to on her part and it is going to take a lot of faith and prayer on my part. Joseph and I might not like each for a little while, but in the end it will all be better. (I hope!!!!) The good things that I thought about at first, hearing her cries and her voice and being able to take her swimming and giving her bubble baths, etc. will come, but we have to go through the process. Step by step, line upon line, precept upon precept, it will come, I just have to be patient. I just have to have faith that my Father in Heaven knows what he is doing and that he is guiding us through this and watching over our sweet little Payten. I have to have faith that my decision to have the trach removed was right and that it will get better. I have to have faith in Payten and know that she is strong enough to do this!
Oh how hard that is! I am her Mom and I don't like to see her hurting or struggling. And it is even harder right now because I am tried and emotional and I want it to all be easy peasy and it's not, it soon will be, but right now, it's not and I hate that! I want my daughter to not have to struggle and she is. I want to take this burden from her and I can't. I want what most every other mother has, a child who can breathe easy and right now I don't! Eventually I will, but I want it now! I don't want to have to go through the process, but I have to and that is hard for me. I have to have patience and that is hard as a Mom to have, but I am learning and growing and becoming more patient each day. Payten is helping me to learn this life lesson. She is teaching me to be strong, faithful and patient! Even though right now it is hard, I soon will see the rainbow! I am just having to go through the storm and as difficult as that may be, I have to keep in mind that it will all be worth it in the end! Please pray for me and my family that we can all make it through, happy, healthy, strong and a live!!!! (LOL!) I want to say, Thank you, all of you, for your love and support, it truly does help us during times like these! You are a blessing in our lives that we can not live without, thank you for that! Take care and God bless!
Thursday, March 21, 2013
Friday, March 8, 2013
Clarification regarding my last post!
After I posted my last post, I realized I didn't explain what has transpired, for those of you who do not follow me on facebook, instagram, etc. So here goes, Payten has been in the hospital since Tuesday, March 5, she went in due to high blood pressure and seizures, but she is leaving with a whole new look and less equipment. Usually hospital stays are no fun and we hate them, but this one has not been so bad! Yes, we have been worried about her having high blood pressure and more seizure and the fact that she has been super tired, but all in all it has been a very productive hospitalization. Since Wednesday, Payten has been off her ventilator and her blood gases have been perfect, yay! So, because we have found out that she no longer needs the vent, I have been pushing the issue of taking her trach out, because for so long I have been told that if it weren't for the vent, Payten would no longer have her trach. Well, today my nagging/wishing became a reality, at first they downsized her trach, then they talked about capping it off to see how she tolerated it, but when the ENT Dr. Mancuso came in to see her, he decided to skip all those steps and just jump to fully decanulation (complete removal of the trach)! Can we say ecstatic! Oh my gosh, I was crying and screaming yay all at once. I can not begin to tell you how this makes me feel and how excited I am for Payten's near future and the new possibilities it holds, because these events. I hope this clarifies any questions you might have had!
Blessings! Huge Blessings!
As I sit here and contemplate how I should begin this post, nothing comes to mind, but the word BLESSINGS. I am so very blessed. Why? I do not know why. The question why, has been running through my head all day. Why me? What have I done in my life to deserve such a blessing as this? There are so many families and children who face turmoil, hardship, grief and pain, such as ours, but what makes us special? So many go through similar things and never come out, either they live with it for the remainder of their life or they pass away, why is Payten defying the odds? She has overcome so much and defied odds in so many instances and I truly am baffled as to why. Why her? I know the Lord's hand is in everything and I know this is what he had planned for our Payten, but I want to know why? I want to know what her mission is that she needs to fulfill, for she has already fulfilled so much in her little life. She has touched so many lives and has taught people so much, that I can not possibly comprehend what is left for her to do. Am I grateful, by all means yes! No parent ever wants to lose their child or have their child go through obstacles such as this, I just don't understand why some are blessed to overcome and others not so much? And I know that I will never fully understand these things until the life here after, but I still wish I could know why.
To say I am overcome with emotion would be an understatement. To say I am not overfilled with gratitude would be ungrateful. To say I am not in shock would be wrong, for the events that have transpired are HUGE! Now, I want to clear something up before I go on. I think some of you think that the trach has been a HUGE ordeal in our families life and that is not totally true. Yes, trachs are not ideal and they do bring extra burdens that are not wanted, but they are also good things, that bring HUGE blessings. I have been grateful for the trach, it has blessed our daughters life in so many ways. It has helped her to breathe, it has helped her to grow, it has helped her to development, but it has also caused some sleepless nights, some long days and frustrating moments, but what in life hasn't brought good and bad? Most everything in life has pros and cons.
Now, recently, I have hated the trach! LOL! Not because it was difficult, rather because I have an ornery 4 yr. old who has a mind of her own and decided she no longer wanted the trach and pulled it out ALL the time! That is why I hated the trach. It was not hard to get back in, it was just tiring, because you would get it back in and it would be out again in a matter of seconds and so it took a lot of my time and energy. That is why I had a Mommy dearest melt down last weekend, because I was fed up! The only thing I can relate it to, that some of you might understand, is a colicky baby. You do all you can to soothe this child who is suffering from colic and you finally get the child to stop crying and you go to set that child down or to walk away and the child starts crying again and this cycle just keeps going and going and going, until you can no longer take it. That is what I have been going through these past couple months with Payten pulling her trach out. But to say that the trach has been a burden in our lives and this a such a HUGE blessing for it to be gone, is not totally true. The trach has not been a burden in our lives but for this short time, the other 3 yrs and 10 months have been good, yes there were moments where it was not as good as others, but all in all it was good, so I will say this, the trach has been a blessing in our daughters life, but it has come time for us to move on, for she no longer needs it and she is ready for new opportunities to be had and they can not be had with the trach, so we say goodbye dear friend, goodbye!
Never did I see this day coming. I had accepted that is was part of who Payten was. I had accepted that the trach would be a forever thing and I was okay with that, it did not bother me, for I loved my daughter no matter what. Now that I see that it is a thing of the past, I am overwhelmed with thoughts and like I said emotions. I don't know what to think. This opens up so many possibilities and I am so excited to see where this takes us. For so long, I have yearned to hear my daughters voice. I have yearned to hear her say, Mommy, I love you! And for so long I have believed that I would never hear it until the life here after and now, it is a possibility, now it is something that could happen in the near future and I can not begin to tell you how that makes me feel. It also opens up doors in her nutrition, for now she will be able to eat by mouth better and maybe in a few years have the G-Tube taken out! Which is another thing that I never thought would be a possibility and now it is. Our families life is going to change in so many ways, my brain is on over load just thinking about all the changes that will take place. We are going to sleep better, our house will to less cluttered with medical equipment and it will be quieter, especially at night! It is crazy to think about and exciting too!
I believe in miracles and I am seeing miracles happening right before my eyes and all I can think is, WOW! Payten you are AMAZING! I have a extraordinary little girl, whose spirit is stronger than anyone could ever imagine. It is by and through her strength and her faith that these things are happening. I am in admiration, here is a person who has been through so much and could have given up at any moment and no one would have held it against her, for if it were us, we would have given up long ago, but she didn't give up. She kept going! Through everything, she remained happy. Through everything, she kept a smile on her face. Through it all she fought a strong fight and now because of her strength, she has come out on top! I am beyond honored to call her my daughter. She is my hero, she is who I look up to and if I can become half the person she is, then I will have lived an amazingly honorable, good life. I have learned so much from this little girl and I still have so much to learn and for that I am grateful that I can be her mother. I try to live my life in way that makes me worthy to call her my daughter, for she truly is perfection!
Now with all this joy, comes fear. I am afraid to become too happy or excited because I fear that she is going to decline again and it will be when I fully let my guard down and that worries me. I fear that I am going to become too comfortable with these new circumstances and I am going to forget how difficult it was and then if she declines, I will have to go through all the hardship and pain again, which I do not want to relive, but I also don't want to be fearful either. I don't want to live cautiously, worrying that she could go back to all of this, meaning the vent, the trach, etc., rather I want to enjoy her life and enjoy this time and this new found happiness. So I guess that is where my faith comes in. I will have faith that the Lord's hand is in all of this and that if the time comes that she digresses, then that time comes, but for now I will live in the moment and I will enjoy and eat up what good her life has to offer now, rather than worry what the future may hold. That is so hard at times to do, but I need to do it. This is a day that I will never forget, for this is a milestone that will change my daughters life forever and for that I thank my Heavenly Father. The next triumph will be when she starts to walk and she will walk! We are getting there, slowly, but surely and that will be another amazing happenstance in Payten's life! Life, what a crazy adventure! And these are the moments that make it worth living. Before I go I want to say thank you to each and everyone of you who have prayed for our Payten, none of this would have happened without your help through prayer, thank you so much for helping our daughter to become better and have been doors of opportunities opened. We are forever grateful for your love, support and kindness! Thank you, thank you, thank you! Keep the prayers coming, they are changing her life! I can't stop smiling and crying, what a great day this has been! I am so very blessed!
To say I am overcome with emotion would be an understatement. To say I am not overfilled with gratitude would be ungrateful. To say I am not in shock would be wrong, for the events that have transpired are HUGE! Now, I want to clear something up before I go on. I think some of you think that the trach has been a HUGE ordeal in our families life and that is not totally true. Yes, trachs are not ideal and they do bring extra burdens that are not wanted, but they are also good things, that bring HUGE blessings. I have been grateful for the trach, it has blessed our daughters life in so many ways. It has helped her to breathe, it has helped her to grow, it has helped her to development, but it has also caused some sleepless nights, some long days and frustrating moments, but what in life hasn't brought good and bad? Most everything in life has pros and cons.
Now, recently, I have hated the trach! LOL! Not because it was difficult, rather because I have an ornery 4 yr. old who has a mind of her own and decided she no longer wanted the trach and pulled it out ALL the time! That is why I hated the trach. It was not hard to get back in, it was just tiring, because you would get it back in and it would be out again in a matter of seconds and so it took a lot of my time and energy. That is why I had a Mommy dearest melt down last weekend, because I was fed up! The only thing I can relate it to, that some of you might understand, is a colicky baby. You do all you can to soothe this child who is suffering from colic and you finally get the child to stop crying and you go to set that child down or to walk away and the child starts crying again and this cycle just keeps going and going and going, until you can no longer take it. That is what I have been going through these past couple months with Payten pulling her trach out. But to say that the trach has been a burden in our lives and this a such a HUGE blessing for it to be gone, is not totally true. The trach has not been a burden in our lives but for this short time, the other 3 yrs and 10 months have been good, yes there were moments where it was not as good as others, but all in all it was good, so I will say this, the trach has been a blessing in our daughters life, but it has come time for us to move on, for she no longer needs it and she is ready for new opportunities to be had and they can not be had with the trach, so we say goodbye dear friend, goodbye!
Never did I see this day coming. I had accepted that is was part of who Payten was. I had accepted that the trach would be a forever thing and I was okay with that, it did not bother me, for I loved my daughter no matter what. Now that I see that it is a thing of the past, I am overwhelmed with thoughts and like I said emotions. I don't know what to think. This opens up so many possibilities and I am so excited to see where this takes us. For so long, I have yearned to hear my daughters voice. I have yearned to hear her say, Mommy, I love you! And for so long I have believed that I would never hear it until the life here after and now, it is a possibility, now it is something that could happen in the near future and I can not begin to tell you how that makes me feel. It also opens up doors in her nutrition, for now she will be able to eat by mouth better and maybe in a few years have the G-Tube taken out! Which is another thing that I never thought would be a possibility and now it is. Our families life is going to change in so many ways, my brain is on over load just thinking about all the changes that will take place. We are going to sleep better, our house will to less cluttered with medical equipment and it will be quieter, especially at night! It is crazy to think about and exciting too!
I believe in miracles and I am seeing miracles happening right before my eyes and all I can think is, WOW! Payten you are AMAZING! I have a extraordinary little girl, whose spirit is stronger than anyone could ever imagine. It is by and through her strength and her faith that these things are happening. I am in admiration, here is a person who has been through so much and could have given up at any moment and no one would have held it against her, for if it were us, we would have given up long ago, but she didn't give up. She kept going! Through everything, she remained happy. Through everything, she kept a smile on her face. Through it all she fought a strong fight and now because of her strength, she has come out on top! I am beyond honored to call her my daughter. She is my hero, she is who I look up to and if I can become half the person she is, then I will have lived an amazingly honorable, good life. I have learned so much from this little girl and I still have so much to learn and for that I am grateful that I can be her mother. I try to live my life in way that makes me worthy to call her my daughter, for she truly is perfection!
Now with all this joy, comes fear. I am afraid to become too happy or excited because I fear that she is going to decline again and it will be when I fully let my guard down and that worries me. I fear that I am going to become too comfortable with these new circumstances and I am going to forget how difficult it was and then if she declines, I will have to go through all the hardship and pain again, which I do not want to relive, but I also don't want to be fearful either. I don't want to live cautiously, worrying that she could go back to all of this, meaning the vent, the trach, etc., rather I want to enjoy her life and enjoy this time and this new found happiness. So I guess that is where my faith comes in. I will have faith that the Lord's hand is in all of this and that if the time comes that she digresses, then that time comes, but for now I will live in the moment and I will enjoy and eat up what good her life has to offer now, rather than worry what the future may hold. That is so hard at times to do, but I need to do it. This is a day that I will never forget, for this is a milestone that will change my daughters life forever and for that I thank my Heavenly Father. The next triumph will be when she starts to walk and she will walk! We are getting there, slowly, but surely and that will be another amazing happenstance in Payten's life! Life, what a crazy adventure! And these are the moments that make it worth living. Before I go I want to say thank you to each and everyone of you who have prayed for our Payten, none of this would have happened without your help through prayer, thank you so much for helping our daughter to become better and have been doors of opportunities opened. We are forever grateful for your love, support and kindness! Thank you, thank you, thank you! Keep the prayers coming, they are changing her life! I can't stop smiling and crying, what a great day this has been! I am so very blessed!
Tuesday, March 5, 2013
The irony of life sometimes
As I was driving home from the hospital tonight the thought hit me, I can not believe how easy it was for me to leave my daughter lying in a hospital bed. Then it got me thinking how terrible that is, how terrible a thing to be able to just walk away, no real worry or concern, just walk away and go home, attend to my other children, sleep and go back in the morning. How awful am I? I am her mother, how can I leave her so easily?
Then I thought, no, no I am not awful, rather I was forced to become accustom to leaving my child lying in a hospital bed while I go home and attend to the rest of my family. Never, though, did I ever think I would grow or have to grow accustom to this and how naive is that! Seriously, here I have a daughter who has some pretty extensive medical issues and at first I did not think we would spend as much time as we have in the hospital. I believed that once she had her different surgeries and we had all her medications, the hospital would be a thing of the past and we would just be able to handle it outpatient between her different doctors. How quickly I discovered I was wrong and that the hospital would be a major aspect in Payten's life and therefore I better get use to it and enjoy it (for lack of better words!). But never in a million years, did I believe it would become as easy as it has become to leave her and go home to attend to my other children. For ultimately, I am leaving her with strangers.
Please, don't get me wrong, these doctors and nurses have been seeing Payten since birth, so they know Payten extremely well and they know us extremely well too, but how much do we really know about them, honestly? Yes, sometimes they feel like family or really close friends, but do I really, KNOW them? So then why is it so easy for me to entrust my daughter to their care?
As I contemplate this, I think it all boils down to the fact that I have to, I have no other choice, I need them, Payten needs them and so therefore I have to put my trust in them and believe they have my daughters best interest at heart. I have to have faith that they love my daughter and I do have that faith in them. Now do I wish that I didn't have to do this, absolutely. Do I feel no parent should have to come to this point, yes. Do I think it is fair, no. But with all of that, it does not change my circumstance. It does not change the fact that my daughter suffers from illnesses that require frequent hospitalizations and so therefore I have to become accustom to this life and I have to love it and embrace it and trust in it and in the good people who are apart of it.
How grateful I am for Cardon's Children's Medical Center and the good Doctors and Nurses who work there. I am thankful that they are in my life and they can help my daughter when it reaches the point of helplessness and we need them to take over. I don't know what I would do if I didn't have such a good facility to take my daughter to.
So, even though at times I feel like a crap mom for leaving my daughter so easily in a hospital bed, I know I am not. I know I am doing the best I can and that I am doing what is best for my daughter. I just find it so ironic that before Payten, I never understood how a parent could leave their child alone in a hospital bed and now I am that parent! Through all of this I am learning and growing and realizing that I need to stop and put myself in other peoples shoes and judge not, because one day I might just be in their exact situation, doing exactly what I am judging them for doing. I am so grateful for these moments I have to learn and grow. I am so thankful for my daughter Payten and the beautiful girl she is and I am truly grateful for the men and women who help her daily with the things she needs and for my Heavenly Father for putting good, trustworthy, honorable people in my life who are qualified to help Payten. It truly does make it easier to trust them with her care. Life is hard, but I am learning how to love it and embrace everything that comes with it! COME WHAT MAY AND LOVE IT, right?!?!
Then I thought, no, no I am not awful, rather I was forced to become accustom to leaving my child lying in a hospital bed while I go home and attend to the rest of my family. Never, though, did I ever think I would grow or have to grow accustom to this and how naive is that! Seriously, here I have a daughter who has some pretty extensive medical issues and at first I did not think we would spend as much time as we have in the hospital. I believed that once she had her different surgeries and we had all her medications, the hospital would be a thing of the past and we would just be able to handle it outpatient between her different doctors. How quickly I discovered I was wrong and that the hospital would be a major aspect in Payten's life and therefore I better get use to it and enjoy it (for lack of better words!). But never in a million years, did I believe it would become as easy as it has become to leave her and go home to attend to my other children. For ultimately, I am leaving her with strangers.
Please, don't get me wrong, these doctors and nurses have been seeing Payten since birth, so they know Payten extremely well and they know us extremely well too, but how much do we really know about them, honestly? Yes, sometimes they feel like family or really close friends, but do I really, KNOW them? So then why is it so easy for me to entrust my daughter to their care?
As I contemplate this, I think it all boils down to the fact that I have to, I have no other choice, I need them, Payten needs them and so therefore I have to put my trust in them and believe they have my daughters best interest at heart. I have to have faith that they love my daughter and I do have that faith in them. Now do I wish that I didn't have to do this, absolutely. Do I feel no parent should have to come to this point, yes. Do I think it is fair, no. But with all of that, it does not change my circumstance. It does not change the fact that my daughter suffers from illnesses that require frequent hospitalizations and so therefore I have to become accustom to this life and I have to love it and embrace it and trust in it and in the good people who are apart of it.
How grateful I am for Cardon's Children's Medical Center and the good Doctors and Nurses who work there. I am thankful that they are in my life and they can help my daughter when it reaches the point of helplessness and we need them to take over. I don't know what I would do if I didn't have such a good facility to take my daughter to.
So, even though at times I feel like a crap mom for leaving my daughter so easily in a hospital bed, I know I am not. I know I am doing the best I can and that I am doing what is best for my daughter. I just find it so ironic that before Payten, I never understood how a parent could leave their child alone in a hospital bed and now I am that parent! Through all of this I am learning and growing and realizing that I need to stop and put myself in other peoples shoes and judge not, because one day I might just be in their exact situation, doing exactly what I am judging them for doing. I am so grateful for these moments I have to learn and grow. I am so thankful for my daughter Payten and the beautiful girl she is and I am truly grateful for the men and women who help her daily with the things she needs and for my Heavenly Father for putting good, trustworthy, honorable people in my life who are qualified to help Payten. It truly does make it easier to trust them with her care. Life is hard, but I am learning how to love it and embrace everything that comes with it! COME WHAT MAY AND LOVE IT, right?!?!
Saturday, January 26, 2013
Life can be very exciting!!!! Especially in the Merrill home!
There's a first time for everything, right? Well, today it was our first time needing to call 911 for our daughter Payten. Yes, we have joined the 911 club and believe me, it is not as "cool" as it sounds!!!! Before I go any further with my story, Payten is okay. No transport to the hospital was necessary. Now let me explain what happened, Payten pulled her trach out sometime during the early morning, without us knowing. You may think, Well, how is that possible? She is on a ventilator, wouldn't the vent go off and alarm you that her trach was out? And to be honest with you, those are very good questions and thoughts. Yes, you would think that the ventilator would alarm us, that it would let us know, aah, excuse me your daughter just pulled out her trach! Get over here! BEEP! BEEP! BEEP!
But in all actuality, if a child who is on a ventilator, pulls out their trach, while still attached to the ventilator and it happens to land on the chest with the trach hole touching the chest or a blanket, etc., it will not alarm at all, because the machine is still reading that the trach is intact. Yes, I know, that is pretty crappy and a little dangerous, but it is what it is and that is why it is important to be aware and periodically check on the child. Well, obviously, we did not do our periodic check, because we were dead to the world from exhaustion and Payten did indeed pull her trach out for who knows how long.
Joseph tried for a little while to get it back in before coming and frantically waking me up to ask if we had trach sizes smaller than 4.0. Which I responded, Yes, we should have a few smaller sizes. Which followed with me jumping out of bed to go on a rampage, looking for smaller trach's. And to my surprise realized all of our smaller size trach sizes had been used a few weeks ago, when a similar incident happened. Yes, Payten does this often! Usually, we are aware when it happens, but there are those few times, when we are not aware and those are the times we need smaller sizes, because the hole in the trachea closes quickly!!!!
I, after realizing we did not have any smaller sizes and assuming that Joseph had tried EVERYTHING, (which is not a good thing to do, by the way!), yells at Joseph, Call 911, we need help. So Joseph calls 911 and our local fire department gets there within 3 minutes of the phone call! Can we say rapid response! Heck yeah!!!! It was totally awesome how quick they were! Anyways, back to the story, the first thing out of one of the fire men's mouths was, Did you happen to use lubricant when trying to put the trach back in? Joseph, ummm, No, I don't even think we have lubricant. Me, aah, yes we do! So I run over, grab the lubricant, Joseph applies it to the trach and walla, the trach slides right in!
Now, let me give you a little history on lubricant, Joseph and I have had opposing opinions on whether lubricant was necessary or not during trach changes/replacements. His opinion being that he believed it was an unnecessary step in the trach changing/placement process and mine being that I felt it was necessary, because I believed it made it easier to place/put the trach back in! Now I am not telling you all this, because I want to prove I'm right, your wrong! Ne'er, Ne'er, Ne'er!!!! Rather, I am giving this background, so that you may all understand my inner frustration with myself, for "ASSUMING" that Joseph had done EVERYTHING that I would have done. Understand? Hopefully. I am kind of angry at myself for not stepping in before calling 911 and trying to place the trach myself, because I would have used lubricant and then we would have avoided a phone call to 911. And a moment of feeling really dumb!
So I guess Joseph and I both learned some valuable lessons, Joseph learned the importance of using lubricant when placing a trach and I learned the importance of not assuming, rather doing what I know to be right and then when that fails me, calling for help. I really do feel a little stupid, but I know that we had our daughters best interest at heart. I also learned that I am not a very nice person during a stressful emergency and Joseph is very indecisive (not a good mix, by the way! We will definitely be working on this! LOL!) I guess we both have some things to work on right?!
All in all it was a good thing, because now we know our local fire department and they know us and we will be better prepared for the next time this happens, which could be this afternoon with as much as this child pulls her trach out!!!! What a way to start a Saturday, adrenaline!!!! I recommend this at least once in your lifetime, NOT! Hopefully everyone Else's Saturday is not as eventful as ours started out being! I am just grateful that Payten is okay.
Before I go, I want to share another lesson that I learned, which is not to ignore the intuition or little voice inside you, telling you go check on your daughter, she pulled her trach out, because that happened, early this morning that impression came upon me and I ignored it and by doing so, we had these fun filled events happen, when they could have been avoided if I would have just listened to that simple, yet powerful impression. So I guess I learned two valuable lessons this morning, 1) Never assume and 2) always follow your intuition. I believe today has been a successful day in the book of life! We are learning! Yes, we may not be the best at this thing called life, but we are learning, and therefore believe we are doing something right! Just a thought! Happy day to you all!
But in all actuality, if a child who is on a ventilator, pulls out their trach, while still attached to the ventilator and it happens to land on the chest with the trach hole touching the chest or a blanket, etc., it will not alarm at all, because the machine is still reading that the trach is intact. Yes, I know, that is pretty crappy and a little dangerous, but it is what it is and that is why it is important to be aware and periodically check on the child. Well, obviously, we did not do our periodic check, because we were dead to the world from exhaustion and Payten did indeed pull her trach out for who knows how long.
Joseph tried for a little while to get it back in before coming and frantically waking me up to ask if we had trach sizes smaller than 4.0. Which I responded, Yes, we should have a few smaller sizes. Which followed with me jumping out of bed to go on a rampage, looking for smaller trach's. And to my surprise realized all of our smaller size trach sizes had been used a few weeks ago, when a similar incident happened. Yes, Payten does this often! Usually, we are aware when it happens, but there are those few times, when we are not aware and those are the times we need smaller sizes, because the hole in the trachea closes quickly!!!!
I, after realizing we did not have any smaller sizes and assuming that Joseph had tried EVERYTHING, (which is not a good thing to do, by the way!), yells at Joseph, Call 911, we need help. So Joseph calls 911 and our local fire department gets there within 3 minutes of the phone call! Can we say rapid response! Heck yeah!!!! It was totally awesome how quick they were! Anyways, back to the story, the first thing out of one of the fire men's mouths was, Did you happen to use lubricant when trying to put the trach back in? Joseph, ummm, No, I don't even think we have lubricant. Me, aah, yes we do! So I run over, grab the lubricant, Joseph applies it to the trach and walla, the trach slides right in!
Now, let me give you a little history on lubricant, Joseph and I have had opposing opinions on whether lubricant was necessary or not during trach changes/replacements. His opinion being that he believed it was an unnecessary step in the trach changing/placement process and mine being that I felt it was necessary, because I believed it made it easier to place/put the trach back in! Now I am not telling you all this, because I want to prove I'm right, your wrong! Ne'er, Ne'er, Ne'er!!!! Rather, I am giving this background, so that you may all understand my inner frustration with myself, for "ASSUMING" that Joseph had done EVERYTHING that I would have done. Understand? Hopefully. I am kind of angry at myself for not stepping in before calling 911 and trying to place the trach myself, because I would have used lubricant and then we would have avoided a phone call to 911. And a moment of feeling really dumb!
So I guess Joseph and I both learned some valuable lessons, Joseph learned the importance of using lubricant when placing a trach and I learned the importance of not assuming, rather doing what I know to be right and then when that fails me, calling for help. I really do feel a little stupid, but I know that we had our daughters best interest at heart. I also learned that I am not a very nice person during a stressful emergency and Joseph is very indecisive (not a good mix, by the way! We will definitely be working on this! LOL!) I guess we both have some things to work on right?!
All in all it was a good thing, because now we know our local fire department and they know us and we will be better prepared for the next time this happens, which could be this afternoon with as much as this child pulls her trach out!!!! What a way to start a Saturday, adrenaline!!!! I recommend this at least once in your lifetime, NOT! Hopefully everyone Else's Saturday is not as eventful as ours started out being! I am just grateful that Payten is okay.
Before I go, I want to share another lesson that I learned, which is not to ignore the intuition or little voice inside you, telling you go check on your daughter, she pulled her trach out, because that happened, early this morning that impression came upon me and I ignored it and by doing so, we had these fun filled events happen, when they could have been avoided if I would have just listened to that simple, yet powerful impression. So I guess I learned two valuable lessons this morning, 1) Never assume and 2) always follow your intuition. I believe today has been a successful day in the book of life! We are learning! Yes, we may not be the best at this thing called life, but we are learning, and therefore believe we are doing something right! Just a thought! Happy day to you all!
Sunday, December 16, 2012
2012 Merrill Family Christmas Letter and Card
I just wanted to Post a Christmas Card, wishing all our friends and family a very Merry Christmas and a blessed New Year filled with many opportunities. This year has been a blessed year for us and we hope your 2012 has been a blessed on as well.
Zachary is 9 and he enjoys Mind Craft, Club Penguin, Mind Craft, Lego's, did I mention Mind Craft, LOL!, listening to Music on his IPod, writing stories and reading. This kid has an amazing imagination! Zachary had the opportunity this summer to go with a friend and stay in a beach house in San Clemente, CA. He had private surfing lessons and played on the beached, he really enjoyed himself. He is a great big brother. He has a very tender heart and is always trying to do good to those around him. He is starting to love Basketball and goes out back and shoots hoops a lot. He stills want to be an Archaeologist when he grows up and is still fascinated with Dinosaurs and Reptiles.
Makenna is 7 and what can I say, she is all girl. She loves Barbies, American Girl Dolls, Make up Throwing tea parties, doing any ones hair, painting her nails, watching girly T.V., having slumber parties, going to a store called Girly Girlz! She takes beginning Ballet and even though she is not the best in the class, she believes she is and that is all that matters!!!! She is my spunky, full of life, kind of sassy, social butterfly, kind of girl. But deep down she is a very sweet, soft spoken little girl with a heart of gold! She loves being a big sister and enjoys helping Mom around the house. She is my organized child, well the most organized out of her and Zach!
Payten is 4 and what a miracle she is. I did not dream of how well Payten would be doing at 4! She may have her challenges and illnesses, but all in all Payten is doing amazing things! She is sitting up on her own, she is starting to stand more with help, we are working on walking with different devices and communicating. She brings joy to our home like no other and we would not be the same with out our Angel from heaven. She has blessed our lives abundant and we love her with all our hearts. I know she is where she is today, because of the love everyone who knows her has for her. One thing I can say, is that when Payten returns home to her Father in Heaven I will know that she knew she was loved.
Emmett is 1 and he is our bouncing baby boy! Literally! This boy does not stop, he is go, go, go! He loves the outside, he would live outside if he could, it is his favorite place to be! If anyone comes to the door, Emmett has to be right there to greet them and when they leave he has to walk them out and say goodbye, it is so cute! Emmett is into books, blocks, dinosaurs, cars, stuffed animals, food, coloring, did I mention food!!!! He is our human garbage disposal, he will eat anything and everything, he LOVES food! He was a surprise baby, but what a joy he has been in our home. He is such an easy going little boy, who loves life! He loves his brother and sisters, he chases them around the house, wanting to be a part of everything. He joins in on Payten's therapy sessions and has so much fun doing so. He loves being the center of attention and his Mommy is his favorite person!!!! Which makes me one happy Momma!!!!!
Joseph is 34 and is still working for Waste Management. He loves his job, but hates the hours and some of the politics involved. He enjoys coming home and playing with the kids. He loves doing yard work. He does not have much time for hobbies, so he does not really have any. He pretty much eats, sleeps and hangs out with his family! He does take me out on dates and that is always a nice event! He likes to read when he can and he would love to go shooting more. He did take Zachary fishing not to long ago and they caught a few fish, so that was fun!
Kim, Me, 31, I am your typical stay at home Mom! I am constantly cleaning my house. I have people in my home every single day and so I feel as though my home is always on display and has to be in tip top shape, so during my free time, that is what you will find me doing, cleaning. well most of the time. I am busy keeping up with my homework that Payten's therapists give me and chasing a 1 year old around, as well as keeping up with the 9 and 7 year old. I enjoy reading when I can and getting on Facebook and blogging. I also like Pinterest and making the recipes I find on there, as well as the crafts. My calling at Church keeps me busy as well, I am in the Cub Scouts, Den Mom over the Wolf's and boy do I love it. Those boys are so much fun! So between that and home, I don't have time for much else.
That is just a little glimpse into our lives, I hope you enjoyed and I hope that you have a very Merry Christmas!
Much love, KIM MERRILL
P.S. below is the link to our 2012 Merrill Family Christmas Card, enjoy!
http://smilebox.com/playBlog/4d7a517a4f5441794d44673d0d0a&blogview=true
Zachary is 9 and he enjoys Mind Craft, Club Penguin, Mind Craft, Lego's, did I mention Mind Craft, LOL!, listening to Music on his IPod, writing stories and reading. This kid has an amazing imagination! Zachary had the opportunity this summer to go with a friend and stay in a beach house in San Clemente, CA. He had private surfing lessons and played on the beached, he really enjoyed himself. He is a great big brother. He has a very tender heart and is always trying to do good to those around him. He is starting to love Basketball and goes out back and shoots hoops a lot. He stills want to be an Archaeologist when he grows up and is still fascinated with Dinosaurs and Reptiles.
Makenna is 7 and what can I say, she is all girl. She loves Barbies, American Girl Dolls, Make up Throwing tea parties, doing any ones hair, painting her nails, watching girly T.V., having slumber parties, going to a store called Girly Girlz! She takes beginning Ballet and even though she is not the best in the class, she believes she is and that is all that matters!!!! She is my spunky, full of life, kind of sassy, social butterfly, kind of girl. But deep down she is a very sweet, soft spoken little girl with a heart of gold! She loves being a big sister and enjoys helping Mom around the house. She is my organized child, well the most organized out of her and Zach!
Payten is 4 and what a miracle she is. I did not dream of how well Payten would be doing at 4! She may have her challenges and illnesses, but all in all Payten is doing amazing things! She is sitting up on her own, she is starting to stand more with help, we are working on walking with different devices and communicating. She brings joy to our home like no other and we would not be the same with out our Angel from heaven. She has blessed our lives abundant and we love her with all our hearts. I know she is where she is today, because of the love everyone who knows her has for her. One thing I can say, is that when Payten returns home to her Father in Heaven I will know that she knew she was loved.
Emmett is 1 and he is our bouncing baby boy! Literally! This boy does not stop, he is go, go, go! He loves the outside, he would live outside if he could, it is his favorite place to be! If anyone comes to the door, Emmett has to be right there to greet them and when they leave he has to walk them out and say goodbye, it is so cute! Emmett is into books, blocks, dinosaurs, cars, stuffed animals, food, coloring, did I mention food!!!! He is our human garbage disposal, he will eat anything and everything, he LOVES food! He was a surprise baby, but what a joy he has been in our home. He is such an easy going little boy, who loves life! He loves his brother and sisters, he chases them around the house, wanting to be a part of everything. He joins in on Payten's therapy sessions and has so much fun doing so. He loves being the center of attention and his Mommy is his favorite person!!!! Which makes me one happy Momma!!!!!
Joseph is 34 and is still working for Waste Management. He loves his job, but hates the hours and some of the politics involved. He enjoys coming home and playing with the kids. He loves doing yard work. He does not have much time for hobbies, so he does not really have any. He pretty much eats, sleeps and hangs out with his family! He does take me out on dates and that is always a nice event! He likes to read when he can and he would love to go shooting more. He did take Zachary fishing not to long ago and they caught a few fish, so that was fun!
Kim, Me, 31, I am your typical stay at home Mom! I am constantly cleaning my house. I have people in my home every single day and so I feel as though my home is always on display and has to be in tip top shape, so during my free time, that is what you will find me doing, cleaning. well most of the time. I am busy keeping up with my homework that Payten's therapists give me and chasing a 1 year old around, as well as keeping up with the 9 and 7 year old. I enjoy reading when I can and getting on Facebook and blogging. I also like Pinterest and making the recipes I find on there, as well as the crafts. My calling at Church keeps me busy as well, I am in the Cub Scouts, Den Mom over the Wolf's and boy do I love it. Those boys are so much fun! So between that and home, I don't have time for much else.
That is just a little glimpse into our lives, I hope you enjoyed and I hope that you have a very Merry Christmas!
Much love, KIM MERRILL
P.S. below is the link to our 2012 Merrill Family Christmas Card, enjoy!
http://smilebox.com/playBlog/4d7a517a4f5441794d44673d0d0a&blogview=true
Saturday, December 1, 2012
My Crap-tastic Day!!!!
I know, I know, it has been awhile since I have posted anything; no real excuse, I just haven't taken the time to do it, I have had good intentions, but have not followed through. Today, I was planning on blogging a Christmas letter, telling about our year as a family and highlighting different things the kids have enjoyed and accomplished, but I am no longer in the upbeat, happy mood I was in earlier today. My happy mood came to a crashing halt after a meeting at Zachary's school, regarding his test scores. (My previous post will explain the reason behind the testing, if you don't already know.)
Let me just say, I was bombarded with a lot of information, that was extremely hard to swallow. It was unexpected information that was difficult to hear. Some of his test scores were great and others not so great! Some I wanted to rejoice about and others I wanted to break down and cry. On top of Zachary's struggle with academics, they found that he struggles with a disorder called, Sensory Processing Disorder. Most kids who have SPD, suffer from Autism as well, but you can have SPD and not have Autism, that is were Zachary falls. He does not have Autism, well, at least that is what we think, we will talk with our Pediatrician and decide if we need to go further with our testing and find out if he does fall into the Autism spectrum.
As they were explaining things that they saw and were explaining the SPD to me, I had so many thoughts running through my head. At first I thought, no, I would have seen this, I have worked with kids who have sensory issues and I have not noticed similar traits with Zachary! But as they went on, it hit me that a lot of the things I had been noticing the past year, maybe two years, makes perfect sense in regards to this diagnosis. I have known or rather had the suspicion that there was something not quite right and I was trying figure it out. I was trying to bring it to the attention of his teachers and his pediatrician, but I kept getting the same answer, "He will grow out of it, just give him time." Oh, how I wish we could have found this out sooner, but at least we are finding out now and we can get him the help he needs.
Although, I did not reach this point of acceptance right away, it took some time, yes, I know, I received the news early this morning and so it really has not been that long, but it still took time for me to handle and accept. Like I just stated, I am grateful to be aware of this problem, but you can only imagine how I felt right after receiving the news. I am pleased to say, that I handled myself well in the meeting, I remained poised and calm, with my emotions in tact, but believe me, once I was alone, the flood gates opened and I was a wreck! Again, like I just stated in the above paragraph, I started blaming myself, for I did not understand why I did not see the signs for SPD earlier? Was I in denial? Did I have blinders on because he was my son? I have worked with children that have suffered from sensory disorders, shouldn't I have seen the signs? Why God? Why didn't I see it? If I had seen this sooner he could have been receiving the help he so desperately needed and he would not be as far behind as he is. Why is this happening? Why my son? Right at that moment, I felt like an ignorant, neglectful, unobservant Mother. I know I should not have felt this way, but I did. Maybe I needed to go through these emotions, maybe I needed to get them out, so I could deal with them and move on and be proactive, rather than feeling sorry for myself and my child. I believe that I needed to come to the realization, that it is what it is, now we know, and now we can get the help Zachary needs to get back up to the performance level he should be at for his age.
Yet, I still can not help but feel alone. I can not help but feel helpless. I can not help but feel that I am standing on the outside looking in wanting so desperately to fix the problem, yet I can not find a way in! I know I am not alone or helpless. I know a lot of children have these sensory problems and I know that there are many who have the diagnosis of SPD. I know that it is not the end of the world, I know that it is manageable and that as long as we implement a home program and he goes to therapies and his Teacher's at school work with him, he will be fine, but all this knowledge does not make it any easier. It does not take the pain away. I am a Mother and I can not help, but feel these raw emotions. I feel as though no one understands my sorrow and pain, even though I know that many are going through the same thing. Right at this moment I am completely frustrated, soon I will be over all these feelings of remorse, but for now I am completely and utterly frustrated. I know that I will soon understand the reasons behind these complications and be able to see that they are small trials compared to other's trials, but for now, they seem to be huge mountains that I can not climb!
I can not help but feel that I am being punished for something I did. Again, I know that is false, I know that this is not a punishment, rather it is a blessing. Dealing with all these emotions and pondering on all these things, has reminded of something a dear friend from high school told me shortly after I had Payten, her quote was, "Please do not take this the wrong way, but it could not have happened to a better person." This statement was referring to me being the Mother of Payten. I have pondered a lot about this statement and what my dear friend meant. I have come to the conclusion that she was trying to help me realize that I am indeed the best person for Payten and now, with regards to Zach, this statement still fits, for I am the best person for him as well. I have a very understanding and compassionate heart, please do not get me wrong, for I am not stating this to boast of myself or praise myself, rather, I believe these are talents/gifts, that the Lord has blessed me with and I believe he knew that because of these talents/gift, I would be the best mother for these children. He knew that I would be understanding and loving and that I would do everything in my power to help these two very special spirits reach their full potential and care for them in the best way possible.
It may be hard and I may feel alone at times, but I know that this was my mission on earth. I know that it will all work out in the end. I just have to remember to remain faithful and put my full trust in God. No matter how scary it may seem to me right now, it will get easier. I can do this people!!!! My Heavenly Father's believes in me, so I will believe in me! I can help Zachary! I can make his environment one that will help enhance his life and his learning! I will be the best Mom I can be! I will get through this and I will be stronger for it!
Now, going back to the meeting and the findings that they found, a lot of the things that the Teacher's and Therapist's brought to my attention are things that can fall into the GTP Cyclohydrolase Deficiency, which is what Payten suffers from. So on top of all the heartache of finding out there was a bigger problem than expected, I now have the fear that Zachary may suffer from GTPCD as well. It makes perfect sense, because in most cases, GTPCD does not start rearing its ugly head until around 8 to 10 years of age and Zachary falls right in the middle of this age group and a lot of the issues he is having have not been noticeable until about mid school year, last year. So, I have made an appointment with Dr. Cook, Payten's neurologist, to further discuss the matter at hand and to have Zachary tested for GTPCD. There is hope in all of this, for there are different severity's of GTPCD and most likely, Zachary, if he does have this disease, will have the mild form of it, therefore he will respond to treatment and hopefully live a full and normal life, filled with many possibilities. But with this also comes the possibility and fear, that Zachary could end up in a wheel chair or suffer from a moderately to severe gait (walking) issue, because this disease can severely affect their walking. They can start degressing in areas and start losing abilities that they use to have, which scares me greatly.
Right now, Zachary will receive O.T. (occupational therapy) at school, along with special education/the resource program, which is a program that helps children learn in the best way that is fit for them and at the pace that is better fit for them. This all brings me to my next biggest fear, it is that this may be financially draining for us. He will need outside therapy, meaning outside of school therapy such as O.T., P.T. and possibly Feeding Therapy. The problem comes that he will not qualify for long term care like Payten does, so that will mean that we will have a lot of out of pocket cost, which could add up to $120 to $160 or so dollars a week, but alas, we will do what we need to do and put our trust in our Father in Heaven that he will help us through.
I have faith that the Lord will help us, he has helped us thus far with Payten and I believe he will help us with Zachary too. Life is not easy and there have been many times, where I have wanted to throw in the towel, but I can't do that, for I have to remain strong, because I am all my children have and they need me. I have to remember that this life is not the reward. rather it is the test, the reward is yet to come! Please pray that these feelings of pain and sorrow will go away and that, Joseph and I will feel at peace with all of this. Pray that we may feel the love that our Father in Heaven has for us and that we may come to an understanding as to why we are being faced with these difficult challenges. Pray that we will find all the answers we need to find for Zachary, so that we can help him in the best way possible. And lastly, please pray that we may know that we have people surrounding us that love us and are there for us whenever needs be. We truly need these prayers, for we really are struggling at this time and we need all the help and love we can get in order for us to push through. Thank you all for your friendship and kindness, we are truly blessed to have such good people surrounding us. Let's hope that my next post will be more upbeat and bright, with a lot better news!!!!
Let me just say, I was bombarded with a lot of information, that was extremely hard to swallow. It was unexpected information that was difficult to hear. Some of his test scores were great and others not so great! Some I wanted to rejoice about and others I wanted to break down and cry. On top of Zachary's struggle with academics, they found that he struggles with a disorder called, Sensory Processing Disorder. Most kids who have SPD, suffer from Autism as well, but you can have SPD and not have Autism, that is were Zachary falls. He does not have Autism, well, at least that is what we think, we will talk with our Pediatrician and decide if we need to go further with our testing and find out if he does fall into the Autism spectrum.
As they were explaining things that they saw and were explaining the SPD to me, I had so many thoughts running through my head. At first I thought, no, I would have seen this, I have worked with kids who have sensory issues and I have not noticed similar traits with Zachary! But as they went on, it hit me that a lot of the things I had been noticing the past year, maybe two years, makes perfect sense in regards to this diagnosis. I have known or rather had the suspicion that there was something not quite right and I was trying figure it out. I was trying to bring it to the attention of his teachers and his pediatrician, but I kept getting the same answer, "He will grow out of it, just give him time." Oh, how I wish we could have found this out sooner, but at least we are finding out now and we can get him the help he needs.
Although, I did not reach this point of acceptance right away, it took some time, yes, I know, I received the news early this morning and so it really has not been that long, but it still took time for me to handle and accept. Like I just stated, I am grateful to be aware of this problem, but you can only imagine how I felt right after receiving the news. I am pleased to say, that I handled myself well in the meeting, I remained poised and calm, with my emotions in tact, but believe me, once I was alone, the flood gates opened and I was a wreck! Again, like I just stated in the above paragraph, I started blaming myself, for I did not understand why I did not see the signs for SPD earlier? Was I in denial? Did I have blinders on because he was my son? I have worked with children that have suffered from sensory disorders, shouldn't I have seen the signs? Why God? Why didn't I see it? If I had seen this sooner he could have been receiving the help he so desperately needed and he would not be as far behind as he is. Why is this happening? Why my son? Right at that moment, I felt like an ignorant, neglectful, unobservant Mother. I know I should not have felt this way, but I did. Maybe I needed to go through these emotions, maybe I needed to get them out, so I could deal with them and move on and be proactive, rather than feeling sorry for myself and my child. I believe that I needed to come to the realization, that it is what it is, now we know, and now we can get the help Zachary needs to get back up to the performance level he should be at for his age.
Yet, I still can not help but feel alone. I can not help but feel helpless. I can not help but feel that I am standing on the outside looking in wanting so desperately to fix the problem, yet I can not find a way in! I know I am not alone or helpless. I know a lot of children have these sensory problems and I know that there are many who have the diagnosis of SPD. I know that it is not the end of the world, I know that it is manageable and that as long as we implement a home program and he goes to therapies and his Teacher's at school work with him, he will be fine, but all this knowledge does not make it any easier. It does not take the pain away. I am a Mother and I can not help, but feel these raw emotions. I feel as though no one understands my sorrow and pain, even though I know that many are going through the same thing. Right at this moment I am completely frustrated, soon I will be over all these feelings of remorse, but for now I am completely and utterly frustrated. I know that I will soon understand the reasons behind these complications and be able to see that they are small trials compared to other's trials, but for now, they seem to be huge mountains that I can not climb!
I can not help but feel that I am being punished for something I did. Again, I know that is false, I know that this is not a punishment, rather it is a blessing. Dealing with all these emotions and pondering on all these things, has reminded of something a dear friend from high school told me shortly after I had Payten, her quote was, "Please do not take this the wrong way, but it could not have happened to a better person." This statement was referring to me being the Mother of Payten. I have pondered a lot about this statement and what my dear friend meant. I have come to the conclusion that she was trying to help me realize that I am indeed the best person for Payten and now, with regards to Zach, this statement still fits, for I am the best person for him as well. I have a very understanding and compassionate heart, please do not get me wrong, for I am not stating this to boast of myself or praise myself, rather, I believe these are talents/gifts, that the Lord has blessed me with and I believe he knew that because of these talents/gift, I would be the best mother for these children. He knew that I would be understanding and loving and that I would do everything in my power to help these two very special spirits reach their full potential and care for them in the best way possible.
It may be hard and I may feel alone at times, but I know that this was my mission on earth. I know that it will all work out in the end. I just have to remember to remain faithful and put my full trust in God. No matter how scary it may seem to me right now, it will get easier. I can do this people!!!! My Heavenly Father's believes in me, so I will believe in me! I can help Zachary! I can make his environment one that will help enhance his life and his learning! I will be the best Mom I can be! I will get through this and I will be stronger for it!
Now, going back to the meeting and the findings that they found, a lot of the things that the Teacher's and Therapist's brought to my attention are things that can fall into the GTP Cyclohydrolase Deficiency, which is what Payten suffers from. So on top of all the heartache of finding out there was a bigger problem than expected, I now have the fear that Zachary may suffer from GTPCD as well. It makes perfect sense, because in most cases, GTPCD does not start rearing its ugly head until around 8 to 10 years of age and Zachary falls right in the middle of this age group and a lot of the issues he is having have not been noticeable until about mid school year, last year. So, I have made an appointment with Dr. Cook, Payten's neurologist, to further discuss the matter at hand and to have Zachary tested for GTPCD. There is hope in all of this, for there are different severity's of GTPCD and most likely, Zachary, if he does have this disease, will have the mild form of it, therefore he will respond to treatment and hopefully live a full and normal life, filled with many possibilities. But with this also comes the possibility and fear, that Zachary could end up in a wheel chair or suffer from a moderately to severe gait (walking) issue, because this disease can severely affect their walking. They can start degressing in areas and start losing abilities that they use to have, which scares me greatly.
Right now, Zachary will receive O.T. (occupational therapy) at school, along with special education/the resource program, which is a program that helps children learn in the best way that is fit for them and at the pace that is better fit for them. This all brings me to my next biggest fear, it is that this may be financially draining for us. He will need outside therapy, meaning outside of school therapy such as O.T., P.T. and possibly Feeding Therapy. The problem comes that he will not qualify for long term care like Payten does, so that will mean that we will have a lot of out of pocket cost, which could add up to $120 to $160 or so dollars a week, but alas, we will do what we need to do and put our trust in our Father in Heaven that he will help us through.
I have faith that the Lord will help us, he has helped us thus far with Payten and I believe he will help us with Zachary too. Life is not easy and there have been many times, where I have wanted to throw in the towel, but I can't do that, for I have to remain strong, because I am all my children have and they need me. I have to remember that this life is not the reward. rather it is the test, the reward is yet to come! Please pray that these feelings of pain and sorrow will go away and that, Joseph and I will feel at peace with all of this. Pray that we may feel the love that our Father in Heaven has for us and that we may come to an understanding as to why we are being faced with these difficult challenges. Pray that we will find all the answers we need to find for Zachary, so that we can help him in the best way possible. And lastly, please pray that we may know that we have people surrounding us that love us and are there for us whenever needs be. We truly need these prayers, for we really are struggling at this time and we need all the help and love we can get in order for us to push through. Thank you all for your friendship and kindness, we are truly blessed to have such good people surrounding us. Let's hope that my next post will be more upbeat and bright, with a lot better news!!!!
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