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!
Friday, March 8, 2013
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!!!!
Friday, October 26, 2012
Some additional thoughts and feelings regarding my previous post
I have been thinking a lot about my last post and about the raw emotions that went into that post. I really did just sit down and write what I was feeling and what was in my head. Though sometimes I feel like I do not explain my feelings as well as I would like and as I was thinking about how I could better express what I was trying to explain in my last blog post, I was reminded of a story that my beautiful sister in law sent me right after I had Payten. I remember reading it and crying. I remember thinking, oh my gosh, this mother has to be able to read minds, for how else would she know exactly how I am feeling?! I guess you could say, because she lived it herself, but I like to believe she could read minds!!!! LOL! Anyways, all these feelings and emotions that I had right at first with Payten, came back to me when I found out what was going on with Zachary and the challenges he would face and the realization that there would be lots of things I would need to learn and change in order to help my son reach his full potential.
This story is entitled: WELCOME TO HOLLAND, please read for you will come to fully understand my emotions for both Payten and Zachary and what I was trying to express to all of you in my previous post.
It was written by BY EMILY PERL KINGSLEY, the mother of an incredibly special boy with Down Syndrome
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!
But there's been a change in flight plans. They 've landed in Holland and there you must stay".
"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!
So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDT'S!!
But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"
This story/explanation makes me cry every time I read it, for it is the utmost of truth. I struggled in school, like I explained in my previous post and I had a lot of unresolved scars from things kids would say to me during my adolescents. Scars that I believed held me back in the sense of furthering my education. I didn't believe I was smart enough to become a Nurse or Teacher, etc. But how wrong I was!!!! It took the Lord showing me that I was smart enough to do anything as long as I had a love and desire for it. I was chosen to be Payten's Mom because the Lord knew I was smart enough to do it! He knew that I had the strength, determination, love, courage and talents to do the role of mothering Payten! No, just because I had these talents, did not mean it came easy. We all have a choice in how we handle life's challenges. We can choose to embrace them or we can spend our lives turning away from them and dreaming of what could have been.
I could have given in to those old wounds from my childhood, that kept shouting in my head, You are no good, You can't do this!, You could barely get through science, are you kidding me!, You are no smart enough!, This is medical stuff, you are not going to be able to understand it, let alone take care of a daughter who has complications such as this, and when you make a mistake because you will, it will be your fault your daughter fails or worse dies! Believe me, I am not exaggerating these thoughts. This truly is what went through my head shortly after birthing Payten and finding out everything to which Payten suffered from. But again like I said, I had a choice, I could give into these feelings or I could believe in myself and trust in the Lord and know that through him and by love, I could do anything that was needed of me.
Once I got past the initial shock of landing in Holland rather than Italy and deciding to embrace this new place, everything started falling into place. I had the courage and strength needed to ask the tough questions and to ask the question that were probably dumb, but that I didn't quite understand! I was given the tools and the time to study what I needed to study to fully understand what all of this would in tale. My Lord blessed me with Doctors who were kind, compassionate, understanding and willing to help teach me, rather than degrade me. By allowing myself to mourn the shattered dreams of the death of my "healthy child", I was able to release the anguish, the anger, the pain, sorrow, bitterness, hurt and guilt that came with this so called death. Once I released these emotions and took the time to go to my Father in Heaven in prayer, I was able to see the beauty of what Holland had to offer. I was able to realize that I was given a gift and that it was my choice what I choose to do with this gift! And I chose to see the beauty, to realize that I was indeed good enough, smart enough, and talented enough to be the best Mom Payten could have.
This was done by choosing to love her. This was done by realizing that no matter what, I created this little being and she had worth, for she was a child of god, no matter what her circumstance was, she deserved to be loved and to be given the opportunities to learn and grow and succeed just like everyone else. From the beginning we have always tried to treat Payten the same as we did our other children and give her the same opportunities our other children had. We have never excluded her in anything. Joseph loves to rough house with our kids and even with how fragile Payten was/is, he still swung her around and wrestled with her, etc. I believe by doing these things, by showing unconditional love to Payten, we gave her the will she needed to fight. The odds have never been in Payten's favor. If you saw a picture of her brain and you saw all the atrophy that has occurred, you would be shocked. It is not a pretty picture and it has the potential to get worse. Yes, she is on medication to help stop or slow down this process, but eventually like I have said in previous posts, this medication will quit working and then it will be a wait and see type of game.
We were told she would most likely never walk, sit, crawl, talk, etc. But we also held out hope that maybe she would. We understood that it most likely would not happen, but we never gave up hope. For we believe in miracles and we believe in a God who grants miracles. And she is living proof that miracles to exist, for she is accomplishing some of these things. After four years, she is finally sitting up on her own! After four years, she is finally starting to stand with assistance for one minute intervals, sometimes longer. After four years, she is starting to take steps in her gait trainer! For the first time we are starting to see our love pay off. We are starting to see our determination and our hard work of proving to Payten that she was just as good as anyone else, pay off. We are seeing miracles happen right before our eyes and they are magnificent! Now, will she be an Olympic Athlete, no! Will she be Valedictorian of her class, absolutely not! But will she know she was loved, will she know that she belonged to a family who was proud to say that they were related to her, will she know she was given a chance? Absolutely! That has always been my prayer for her, that she knows how truly special she is and that she knows we know how special she is and that we love her with all our hearts.
Sometimes I wonder to myself, why did this happen when it did. Why didn't it happen when my other children were a little older and could more fully understand the circumstance which we were faced with and feel a little more secure in the fact that Mom and Dad would be there for them and love them no matter what. For a long time I didn't understand or know the answer to these questions, but I now believe this circumstance with Payten came at the time it did, to help open my eyes to what was important and to help put my priorities into place and to strengthen my talents and abilities that I could and would have more faith in myself, so that I could help Zachary face this new challenge in his life. As painful as it is to accept, for I have been there and like I said in my last post I have felt the pain these challenges bring and I did not want this for my child. But I have come to know that everything will be okay. I know what the greatest thing I can do for him is, and that is love him, believe in him and let him know that he is a child of god who is of worth and value!
I have been brought to my knees in gratitude many times, for these lessons I have learned. I could have never imagined the changes that would take place within myself, from giving birth to a child named Payten. I now understand the meaning of trusting in the Lord with all thine heart and leaning not to mine own understanding, for if we do this, he will mold us into the person he needs us to be, in order to fulfill the mission we were placed here to fulfill. My mission was to be a Mom to four beautiful children! Throughout my life I will keep striving to learn and grow, so that I may become better and learn to love my children the way they are intended to be loved! Zachary will go on to do great things! It may take him longer than most, just like Payten, but he will do great things, just like Payten is! I hope this gives a little more insight to how I was feeling the other day when I had the bomb dropped on me about Zachary and his learning disability. I also hope it gives you a little more insight to how I have felt the past fours years being Payten's Mother and what it takes to mother a child that is so very special as she is. May all parents realize the important roles they play in their children's live and be the love and examples their children need them to be in order for them to reach their full potential. God bless you all!
This story is entitled: WELCOME TO HOLLAND, please read for you will come to fully understand my emotions for both Payten and Zachary and what I was trying to express to all of you in my previous post.
It was written by BY EMILY PERL KINGSLEY, the mother of an incredibly special boy with Down Syndrome
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!
But there's been a change in flight plans. They 've landed in Holland and there you must stay".
"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!
So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDT'S!!
But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"
This story/explanation makes me cry every time I read it, for it is the utmost of truth. I struggled in school, like I explained in my previous post and I had a lot of unresolved scars from things kids would say to me during my adolescents. Scars that I believed held me back in the sense of furthering my education. I didn't believe I was smart enough to become a Nurse or Teacher, etc. But how wrong I was!!!! It took the Lord showing me that I was smart enough to do anything as long as I had a love and desire for it. I was chosen to be Payten's Mom because the Lord knew I was smart enough to do it! He knew that I had the strength, determination, love, courage and talents to do the role of mothering Payten! No, just because I had these talents, did not mean it came easy. We all have a choice in how we handle life's challenges. We can choose to embrace them or we can spend our lives turning away from them and dreaming of what could have been.
I could have given in to those old wounds from my childhood, that kept shouting in my head, You are no good, You can't do this!, You could barely get through science, are you kidding me!, You are no smart enough!, This is medical stuff, you are not going to be able to understand it, let alone take care of a daughter who has complications such as this, and when you make a mistake because you will, it will be your fault your daughter fails or worse dies! Believe me, I am not exaggerating these thoughts. This truly is what went through my head shortly after birthing Payten and finding out everything to which Payten suffered from. But again like I said, I had a choice, I could give into these feelings or I could believe in myself and trust in the Lord and know that through him and by love, I could do anything that was needed of me.
Once I got past the initial shock of landing in Holland rather than Italy and deciding to embrace this new place, everything started falling into place. I had the courage and strength needed to ask the tough questions and to ask the question that were probably dumb, but that I didn't quite understand! I was given the tools and the time to study what I needed to study to fully understand what all of this would in tale. My Lord blessed me with Doctors who were kind, compassionate, understanding and willing to help teach me, rather than degrade me. By allowing myself to mourn the shattered dreams of the death of my "healthy child", I was able to release the anguish, the anger, the pain, sorrow, bitterness, hurt and guilt that came with this so called death. Once I released these emotions and took the time to go to my Father in Heaven in prayer, I was able to see the beauty of what Holland had to offer. I was able to realize that I was given a gift and that it was my choice what I choose to do with this gift! And I chose to see the beauty, to realize that I was indeed good enough, smart enough, and talented enough to be the best Mom Payten could have.
This was done by choosing to love her. This was done by realizing that no matter what, I created this little being and she had worth, for she was a child of god, no matter what her circumstance was, she deserved to be loved and to be given the opportunities to learn and grow and succeed just like everyone else. From the beginning we have always tried to treat Payten the same as we did our other children and give her the same opportunities our other children had. We have never excluded her in anything. Joseph loves to rough house with our kids and even with how fragile Payten was/is, he still swung her around and wrestled with her, etc. I believe by doing these things, by showing unconditional love to Payten, we gave her the will she needed to fight. The odds have never been in Payten's favor. If you saw a picture of her brain and you saw all the atrophy that has occurred, you would be shocked. It is not a pretty picture and it has the potential to get worse. Yes, she is on medication to help stop or slow down this process, but eventually like I have said in previous posts, this medication will quit working and then it will be a wait and see type of game.
We were told she would most likely never walk, sit, crawl, talk, etc. But we also held out hope that maybe she would. We understood that it most likely would not happen, but we never gave up hope. For we believe in miracles and we believe in a God who grants miracles. And she is living proof that miracles to exist, for she is accomplishing some of these things. After four years, she is finally sitting up on her own! After four years, she is finally starting to stand with assistance for one minute intervals, sometimes longer. After four years, she is starting to take steps in her gait trainer! For the first time we are starting to see our love pay off. We are starting to see our determination and our hard work of proving to Payten that she was just as good as anyone else, pay off. We are seeing miracles happen right before our eyes and they are magnificent! Now, will she be an Olympic Athlete, no! Will she be Valedictorian of her class, absolutely not! But will she know she was loved, will she know that she belonged to a family who was proud to say that they were related to her, will she know she was given a chance? Absolutely! That has always been my prayer for her, that she knows how truly special she is and that she knows we know how special she is and that we love her with all our hearts.
Sometimes I wonder to myself, why did this happen when it did. Why didn't it happen when my other children were a little older and could more fully understand the circumstance which we were faced with and feel a little more secure in the fact that Mom and Dad would be there for them and love them no matter what. For a long time I didn't understand or know the answer to these questions, but I now believe this circumstance with Payten came at the time it did, to help open my eyes to what was important and to help put my priorities into place and to strengthen my talents and abilities that I could and would have more faith in myself, so that I could help Zachary face this new challenge in his life. As painful as it is to accept, for I have been there and like I said in my last post I have felt the pain these challenges bring and I did not want this for my child. But I have come to know that everything will be okay. I know what the greatest thing I can do for him is, and that is love him, believe in him and let him know that he is a child of god who is of worth and value!
I have been brought to my knees in gratitude many times, for these lessons I have learned. I could have never imagined the changes that would take place within myself, from giving birth to a child named Payten. I now understand the meaning of trusting in the Lord with all thine heart and leaning not to mine own understanding, for if we do this, he will mold us into the person he needs us to be, in order to fulfill the mission we were placed here to fulfill. My mission was to be a Mom to four beautiful children! Throughout my life I will keep striving to learn and grow, so that I may become better and learn to love my children the way they are intended to be loved! Zachary will go on to do great things! It may take him longer than most, just like Payten, but he will do great things, just like Payten is! I hope this gives a little more insight to how I was feeling the other day when I had the bomb dropped on me about Zachary and his learning disability. I also hope it gives you a little more insight to how I have felt the past fours years being Payten's Mother and what it takes to mother a child that is so very special as she is. May all parents realize the important roles they play in their children's live and be the love and examples their children need them to be in order for them to reach their full potential. God bless you all!
Wednesday, October 24, 2012
Dreams we have for our children, do not always go as planned.
Motherhood is really hard at times! ~ This is a statement every mother has said at least once in their life as a mother. For me, I say this often, because it is really hard. Sometimes I feel that I have it harder than most and then I realize that is not true, it could always be harder. And it is all about perspective and how we see things/deal with things/situations. Right now my heart is breaking a little inside for one of my children, no, not the one you think, another one! I am seeing me in this child. I am seeing things that I had to go through and struggle with as a child, things that I was hopeful my children would never have to face and now one of my kids is having to face it and it is hard to see. I understand the pain, for other children can be so cruel and I still have scars from things children did to me and I worry that my child will have scars and I don't want this for them. As a Mom you want everything to be perfect for your kids, you want to protect them from hardships, grief or pain. You want them to be better and have better than what you had. Unfortunately, sometimes that is not possible and as a mother this is hard to swallow.
When I was a child, I had a learning disability in reading, writing, and language and I was tormented by others. I was called every name in the book and not only did I suffer from that, I suffered from a weight problem, I was the heavy, dumb, clumsy kid, as everyone called me. Scars that have never fully healed and insecurities I still face to this day. Maybe that is why I am a perfectionist, control freak, people pleaser, severely OCD person who allows people to take advantage of her! But with all of this, comes good too, for I have learned compassion, understanding, courage, strength, kindness and love. Things that many people lack. I know how it feels to be the outcast and think that is why when I have served in different areas where children are involved, the kids who are more quiet, reserved, shy, etc. find comfort with me and are attracted to me, because I relate to them, I understand them and I show them compassion and love that they are so desperately seeking. So even though I hated many things about myself as a child and wished I was different, meaning smarter, prettier, thinner, etc. I am grateful for the lessons I learned from being faced with these trials.
I do have a reason for sharing all of this! Believe me, this is a part of me that I have tried to bury, it is a part of me that is extremely hard and emotional to share with others. The reason I share this is because my son Zachary is facing the learning disability part. He doesn't suffer from the weight or looks issues I did, but the learning issues he has. He struggles in his reading, writing and language, just like I did. And I have seen it for while now and I have tried to get the school and teacher's to see what I have seen and finally they are seeing it and they are listening. I wish they would have given him help sooner, but I am glad they are willing to give him the extra help he needs now. I still struggle with blaming myself, for I feel that if my life would have been less hectic. If I would not have neglected him, because I had Payten to care for, he would not have these learning problems. Even though I know I did my best and juggled my life to the best of my ability and still do, I can not help but blame myself for him falling behind. I am going through an inner hell coming to terms with all of this, for I feel, why does another one of my children have to suffer. Doesn't Payten suffer enough, why does Zachary have to suffer? It just does not seem fair, but then I am reminded, that it could be worse and I need to find the good in this and be grateful for the blessings I do have.
For some of you reading this, this all may seem very silly. What's the big deal? So he has a learning disability, who cares? He's not dying! It's something that can be fixed and you are correct! It isn't a big deal, it is something that can be fixed, but it is also something that can affect that child's self esteem and spirit and that is where the big deal lies, for that is what I don't want to be affected. I don't want my child's confidence broken, self esteem lessened, spirit shattered, because some other child finds it funny/easy to tease or bully him. And that happens to these kids who suffer from these problems. So I have the tough job as a Mom, to sit down and talk with my son and explain to him, that yes he may be different in the sense of how he learns, but he is no different from any other child out there! He is just as smart and has the same opportunities as any other person, he just may need a little extra help, support or even a different or longer path to follow in order to get to that same place and that no matter what happens or no matter what people say, he is great just the way he is. The problem is, I pray that he listens and believes me, for my Mom always did this with me and I still let the things other people would say, affect and hurt and scar me and that is my fear for my son. I fear, he too will allow others ignorance to scar him and I don't want him to be damaged like I was damaged. So again like I said before, this thing called Motherhood is hard!
Going through this and recently celebrating Payten's birthday, has brought me back to the eventful/painful time of Payten's life when she was first born. Being reminded of how you have dreams for your children and how you always dream only best dreams for them, but sometimes the Lord has other plans that shatter those dreams. While pregnant you always think of your child and the life that child will have. You dream about how perfect they will be and how beautiful and smart, etc. they will be. Never do you think something will be wrong. But when that day hits, whether it be right at birth or nine years later, it still is devastating. For you are faced with a circumstance that you have to mourn. No matter how big or small it is, you still have to go through a grieving process. Reason being, the dreams you had for that child have been shattered and you have to face those shattered dreams and mourn those shattered dreams and accept those shattered dreams. For Payten it was really difficult, because Payten is not a straight forward case. She does not have Cancer, Autism, Diabetes, Learning disability, Cerebral Palsy, etc. She has an unusual case, full of many different things that bring uncertainty and unknown prognosis'. So through these four years we have had to live with the reality that she would not accomplish anything. We had to understand that every time she went into the hospital, might be the end of her little life. But we also had to live with the faith and hope that hurts would be healed and that she would accomplish things as long as the Lord deemed fit.
Can I just say, that Payten is a miracle! She has accomplished things beyond belief and she is still going strong! It is amazing to see! I never believed she would sit up and she is, I didn't know if she would roll over and she does! I didn't think I would be able to communicate with her and she is starting to do so! Hope is a great thing! We have always kept hope within our hearts regarding Payten and I believe that it is because of that hope, that Payten is able to do these things today. She is acting like a typical one year old, not walking yet! I say yet, because I have great faith and hope that in the near future with help from walking device she will! Yes, she is four and she has the mentality of a one year old, but all I have to say is it is progress! Yes, it may be extremely slow, but progress is progress and we will take what we can get! So as I have been faced with all of these recent findings regarding Zachary, I am reminded by my miracle baby, Payten, that it will be okay. That through hope all things can be done and miracles can happen! It will be challenging and dreams of him not having to face things I had to face as a child have been shattered, but it will be okay. He will make it and he will be better, stronger and greater because of it! Zachary is my kind hearted, peaceful loving, understanding child! I believe the Lord blessed him with these gifts because he knew he would be faced with some difficulties and these gifts would help mold him into the outstanding person he will become and is!
I love being a Mom and I love my children and I love my life. I have been faced with many difficulties, that at times seem unfair and if I could choose do it all over again, I would not want to relive these difficulties, but I would want to have the knowledge that I have gained by going through these difficulties. I would not give up these life altering lessons, for anything, for they are blessings that have made me a better person, wife and mother. So even though Motherhood is difficult and some of the dreams I have had for my kids have been shattered/changed, I would not trade it for the life of me, because it is beautiful and I love being a mom! And I believe my kids are perfect, as perfect as can be! May we all find the good in life!
When I was a child, I had a learning disability in reading, writing, and language and I was tormented by others. I was called every name in the book and not only did I suffer from that, I suffered from a weight problem, I was the heavy, dumb, clumsy kid, as everyone called me. Scars that have never fully healed and insecurities I still face to this day. Maybe that is why I am a perfectionist, control freak, people pleaser, severely OCD person who allows people to take advantage of her! But with all of this, comes good too, for I have learned compassion, understanding, courage, strength, kindness and love. Things that many people lack. I know how it feels to be the outcast and think that is why when I have served in different areas where children are involved, the kids who are more quiet, reserved, shy, etc. find comfort with me and are attracted to me, because I relate to them, I understand them and I show them compassion and love that they are so desperately seeking. So even though I hated many things about myself as a child and wished I was different, meaning smarter, prettier, thinner, etc. I am grateful for the lessons I learned from being faced with these trials.
I do have a reason for sharing all of this! Believe me, this is a part of me that I have tried to bury, it is a part of me that is extremely hard and emotional to share with others. The reason I share this is because my son Zachary is facing the learning disability part. He doesn't suffer from the weight or looks issues I did, but the learning issues he has. He struggles in his reading, writing and language, just like I did. And I have seen it for while now and I have tried to get the school and teacher's to see what I have seen and finally they are seeing it and they are listening. I wish they would have given him help sooner, but I am glad they are willing to give him the extra help he needs now. I still struggle with blaming myself, for I feel that if my life would have been less hectic. If I would not have neglected him, because I had Payten to care for, he would not have these learning problems. Even though I know I did my best and juggled my life to the best of my ability and still do, I can not help but blame myself for him falling behind. I am going through an inner hell coming to terms with all of this, for I feel, why does another one of my children have to suffer. Doesn't Payten suffer enough, why does Zachary have to suffer? It just does not seem fair, but then I am reminded, that it could be worse and I need to find the good in this and be grateful for the blessings I do have.
For some of you reading this, this all may seem very silly. What's the big deal? So he has a learning disability, who cares? He's not dying! It's something that can be fixed and you are correct! It isn't a big deal, it is something that can be fixed, but it is also something that can affect that child's self esteem and spirit and that is where the big deal lies, for that is what I don't want to be affected. I don't want my child's confidence broken, self esteem lessened, spirit shattered, because some other child finds it funny/easy to tease or bully him. And that happens to these kids who suffer from these problems. So I have the tough job as a Mom, to sit down and talk with my son and explain to him, that yes he may be different in the sense of how he learns, but he is no different from any other child out there! He is just as smart and has the same opportunities as any other person, he just may need a little extra help, support or even a different or longer path to follow in order to get to that same place and that no matter what happens or no matter what people say, he is great just the way he is. The problem is, I pray that he listens and believes me, for my Mom always did this with me and I still let the things other people would say, affect and hurt and scar me and that is my fear for my son. I fear, he too will allow others ignorance to scar him and I don't want him to be damaged like I was damaged. So again like I said before, this thing called Motherhood is hard!
Going through this and recently celebrating Payten's birthday, has brought me back to the eventful/painful time of Payten's life when she was first born. Being reminded of how you have dreams for your children and how you always dream only best dreams for them, but sometimes the Lord has other plans that shatter those dreams. While pregnant you always think of your child and the life that child will have. You dream about how perfect they will be and how beautiful and smart, etc. they will be. Never do you think something will be wrong. But when that day hits, whether it be right at birth or nine years later, it still is devastating. For you are faced with a circumstance that you have to mourn. No matter how big or small it is, you still have to go through a grieving process. Reason being, the dreams you had for that child have been shattered and you have to face those shattered dreams and mourn those shattered dreams and accept those shattered dreams. For Payten it was really difficult, because Payten is not a straight forward case. She does not have Cancer, Autism, Diabetes, Learning disability, Cerebral Palsy, etc. She has an unusual case, full of many different things that bring uncertainty and unknown prognosis'. So through these four years we have had to live with the reality that she would not accomplish anything. We had to understand that every time she went into the hospital, might be the end of her little life. But we also had to live with the faith and hope that hurts would be healed and that she would accomplish things as long as the Lord deemed fit.
Can I just say, that Payten is a miracle! She has accomplished things beyond belief and she is still going strong! It is amazing to see! I never believed she would sit up and she is, I didn't know if she would roll over and she does! I didn't think I would be able to communicate with her and she is starting to do so! Hope is a great thing! We have always kept hope within our hearts regarding Payten and I believe that it is because of that hope, that Payten is able to do these things today. She is acting like a typical one year old, not walking yet! I say yet, because I have great faith and hope that in the near future with help from walking device she will! Yes, she is four and she has the mentality of a one year old, but all I have to say is it is progress! Yes, it may be extremely slow, but progress is progress and we will take what we can get! So as I have been faced with all of these recent findings regarding Zachary, I am reminded by my miracle baby, Payten, that it will be okay. That through hope all things can be done and miracles can happen! It will be challenging and dreams of him not having to face things I had to face as a child have been shattered, but it will be okay. He will make it and he will be better, stronger and greater because of it! Zachary is my kind hearted, peaceful loving, understanding child! I believe the Lord blessed him with these gifts because he knew he would be faced with some difficulties and these gifts would help mold him into the outstanding person he will become and is!
I love being a Mom and I love my children and I love my life. I have been faced with many difficulties, that at times seem unfair and if I could choose do it all over again, I would not want to relive these difficulties, but I would want to have the knowledge that I have gained by going through these difficulties. I would not give up these life altering lessons, for anything, for they are blessings that have made me a better person, wife and mother. So even though Motherhood is difficult and some of the dreams I have had for my kids have been shattered/changed, I would not trade it for the life of me, because it is beautiful and I love being a mom! And I believe my kids are perfect, as perfect as can be! May we all find the good in life!
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