What is YOUR story? {special needs}

This little corner of the web has grown and evolved and morphed over the years.

Much by itself.

Driven largely by readers.

And a constant questioning of what on earth I’m doing and how in the world I got here.

But, God has been clear to me as I do this bloggy thing.

We are meant for community.

We are designed to Glorify.

We are intended for greater things through our circumstances.

Mamas of special needs know this.

It’s this funny paradox: if given the chance, I would wish away all of the medical needs my children struggle with.

Yet, in the same breath, I proclaim that I wouldn’t change a thing.

It makes no sense right?

Surely my mother’s heart wants nothing of struggle and pain for my sweet babies.

Of course I worry of what she will endure in junior high if her gait isn’t exactly perfect.

Will there be learning disabilities that come with jeers and taunts?

The hairs on my neck stand at attention just typing that out.

Oh the Mama Bear in me is something fierce.  Fierce.

But with each struggle and each frustration and every single tear…

I know without a doubt that this is all according to plan.

His plan.

And it is perfect.

I am a better mother.  I am a better friend.  I am a better person through the therapies and specialists and appointments.

Henry and Lucy are better siblings.

They will protect their littlest sister and anyone else wronged in those school hallways.

I know it.  In my bones.

My sweet girl touches each person she meets.

She is special and wholly and wonderfully made.

She is designed for much greater.

We all are.

And so, amid the tears and moments of overwhelming frustration…we mamas know that it’s gonna be okay.

It’s all the way it’s supposed to go.

Our stories are being written exactly as they were intended to be.

It is up to us how we use them.

And so, it is YOUR turn.

Have you been touched by special needs in your life?

Share your story here.

If you’ve already written a post on your own blog, link up here.

If you don’t have a blog, leave a comment telling your story in this post.

Encourage another mama walking the path feeling alone.

Be encouraged that the last thing in the world you are is alone.

Love on one another.

Share.

 


 

 

 

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

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Comments

  1. 1

    I encouraged a new mother just yesterday. My son was born with Down Syndrome, a heart defect and a somewhat rare colon defect. He had successful open heart surgery at the age of three months. His colon disorder has resulted in six surgeries the last being in April when he developed a horrible bowel obstruction that put him in serious condition. Our local surgeons didn’t feel like they could treat him so after a few days in our children’s hospital he was flown by air ambulance 1200 miles to another hospital with a more qualified specialist. He underwent emergency surgery and developed complications resulting in a week stay in the PICU–most of it on a ventilator with a chest tube for a collapsed lung. He’s doing better now and life moves on.

    When he was two we started trying for another baby and found out after a year that we are infertile. Our odds of pregnancy without intervention are 1 in 1,000,000. We didn’t even know we had a problem when our son was born and look at those odds. He nearly died a couple of times in his first year and yet he beat those odds as well. We have no doubt in our house that God has a plan. When our son was four we adopted our beautiful daughter.

    A few years ago I started doing new parent outreach for our local DS association. I love meeting new families and encouraging them. I spoke with a new mother just yesterday and one of the things I told her is that she is not alone. They can meet my son and know that it will be okay–different but okay. My little guy is such an ambassador. He loves life and makes friends everywhere–even the check-out line at Wal-Mart. He can make the surliest person smile. When our son was three my husband’s friend and his wife had a baby born with DS. They didn’t take the diagnosis well and nearly four years later I think they still struggle. They don’t understand how I can do new parent outreach. I do it because I want to help and because I believe that God’s plan is perfect. My son isn’t a mistake make by God, he’s made how God wanted him to be. God teaches us daily through our son and I wish everyone could have that blessing becaue it is beautiful.

  2. 2

    Our story was featured a couple of years ago on Power of moms.

    http://powerofmoms.com/2010/06/each-day-is-a-gift/

    Our son was born with Tetrology of Fallot and our daughter has a hole in her heart to learn more about our family you can read about us in our blog.

  3. 3
    Joni Kelso says:

    My story started after 24 + hrs of labor which included 3 hrs of pushing. The busted blood vessels all over my chest type of pushing. I looked at my OB and said, “We can’t do this anymore.” She responded, “What?’ I said again, “We can’t do this anymore. We are too tired.” I didn’t KNOW anything was wrong. None of the monitors indicated an issue. I guess it was kinda my first mommy instinct moment. Luckily, she listened. She moved into high gear and prepared for a vacuum delivery. Usually, a successful birth is achieved with one push with the use of the vacuum. Not with us. I think it was 3. He was SO stuck and she was pulling SO hard. She actually had one foot on the floor and one on the bed. The suction broke and she literally almost fell backward. And he STILL wasn’t out! When he did emerge he was lifeless! I will never forget the look on her face as she gently cradled my newborn son to her body. She quietly turned around and told someone to get NICU there. They were there in an INSTANT. All I remember hearing as they frantically tried to revive him was, “He isn’t breathing.” answered with, “But he has a HEARTBEAT” and then, “How is that possible?” So they kept going. No one expected him to make it! He was whisked away to NICU and within the hour he began seizing. Not good! Everything pointed to oxygen deprivation. Everything pointed to worse case scenario. Sometime in the wee hours of the morning, the neonatologist burst into my room and threw some consent forms at me. “Please sign these. Your baby needs a blood transfusion. I don’t have time to explain, just sign them. I will explain later.” After I signed the papers without reading them, she ran out of the room. The whole thing lasted maybe 2 minutes total. My husband never even woke up. I lay there in the dark not knowing what was happening or what was going to happen but TRUSTING that God was with him while I could not be. After only a few hours of sleep, I was finally able to go down and see him. He was white as a sheet. Colorless and unmoving. Tubes going every which way. He was MAXED out on every single blood pressor he could be on and his blood pressure was still tanking. I didn’t know where to touch him. I just wanted to hold him, but that wasn’t possible. Every little move caused drastic changes in his vitals. Every LOUD noise caused drastic changes in his vitals. The next day, they decided to do an EEG. They were convinced there would be no brain function. No brain function meant that there would be no reason to fight for him. Because of the EEG, they had to wean him off of all sedating medications. He began to wake up. As the nurse was explaining the whole EEG procedure and what the results would mean, my baby boy began to try to cry. Mind you, a tube was breathing for him so we couldn’t hear a thing. But I looked down and the look of fear was so clearly evident on his little face. I leaned over and whispered to him, “Mommy is here. Mommy is right here with you.” As soon as he heard my voice he stopped crying and his little eyes began searching for me! I will never forget the moment our eyes met! The look of peace that came over him was nothing short of amazing! Of course, I kept talking to him. After that I don’t even remember what was said. I do remember that he continued to try to cry. It was like he was looking at me and saying, “Mommy, what are they doing to me?” I knew in that moment that his brain was not affected. I didn’t even care about the coming EEG. No one could tell me his brain wasn’t functioning. Turns out, the EEG showed a little slowing, but it WAS working. That moment would hold me for the next two weeks. Although his brain was functioning the rest of his body wasn’t. Kidney failure and liver failure ensued. Because of the kidney failure, he was able to urinate and his little body swelled. Probably up to 12 lbs. He was only 7 lbs 6 oz at birth. His scrotum swelled to the size of a grapefruit. They had to use a size 2 diaper just to keep him covered. Because of the liver failure, he turned a horrid shade of orange. An indescribable shade of orange. Like a really bad fake spray tan. They talked dialysis and kidney transplant. They talked ECMO (the machine that removes all the blood from your body, filter it, then returns it). He had MULTIPLE blood transfusions everyday. He was in DIC which meant his blood was destroying itself… one type of blood cell was eating the other type. At two weeks old, there was a rotation of doctors. The dr that took over his care was the lead neonatologist. She didn’t think he would live and began to remove ALL of his life saving equipment. And he fought! Everytime they would remove something, his body would just take over. They removed the vent tube, he began breathing. He literally went from 100% vent dependent to breathing completely on his own in 2 days! They removed the cath and he began making urine. He slowly came to life. He began eating from a bottle with supplement ng tube feedings. One day, he decided he was done with the feeding tube and he removed it himself. We found it curled up in the corner of his crib and he was totally bottle fed from then on. He came home at 5 1/2 weeks and started meeting milestones. He smiled at 6 weeks, like he was supposed to. Weeks went by and more seizures started. Infantile spasms. These type of seizures he was having were not good indicators of future prognosis. The y typically lead to severe mental retardation. They did not : ) His whole infancy was an up and down roller coaster. When he was 8 months old he lost all of his skills and didn’t even have the reflexes of a newborn. Everything was gone in a matter of two weeks. He was hospitalized for a week. An MRI showed severe brain damage. He came home with a feeding tube and we were talking funeral homes as no one expected him to make it another month. He spent the next two weeks at home, basically in a coma. He started coming back to us with a small weak smile. It was very vague and I didn’t even know if that is what I was seeing. None of his doctors believed me! He smiled again on December 15 and rolled over on New Years Eve. His skills started coming back so fast that I couldn’t keep up! He began sitting up on his own in early March. Everyday there was something new. His doctors were AMAZED. Completely speechless. They would just sit, staring at him in awe as I told them all he was learning. He is my proof that there are still miracles! True, heaven sent, God given miracles. Through him, God has taught me not to judge. That 4 year old you see at the store that still has a pacifier? Don’t judge. You don’t know his story. That 6 yr old who acts out in public and behaves totally inappropriately? Don’t judge. You don’t know her history. That 5 yr old at the park who is just a bit off and does weird things? Don’t keep your kids away and think of the parent as bad. Maybe he has spent much of his infancy and toddler years fighting for his life and struggling to learn every new skill.

    I wouldn’t change anything but then again I would change everything dilemma? I love how who he is has changed me. I love how God gave me my son to make me a better person. I am more patient, more kind. I don’t care about the little things or the petty things. I don’t care about money or clothes or other material possessions. I care about my family. As long as we have each other, that really is all that matters. I don’t care if my house is left cluttered for a week because I am too busy playing and helping him explore and learn. Conversely, I would take it all away from him if I could. It kills my soul to see him hurt. It breaks my heart to hear other kids tease or make fun of him. He has such an innocent heart and he doesn’t even realize that they tease him and make fun of him. Such a blessing for him but an even bigger knife to my heart. If the other kids could only understand how hard he works. He doesn’t get what is socially inappropriate. Today, I dropped him off at school for his first day of first grade. As he is walking in the the school amongst all the bigger kids, I am terrified. Terrified and so humbly thankful all at the same time. The emotions rush around my heart and mind and I am just so overwhelmed by God’s miracle that is my son. Please God continue to guide and protect my boy….

    • 4

      Joni, wow…. amazing story. You are so strong to trust God through all of this. I can’t imagine being in your situation, but I do know that your son is so blessed for the awesome mother that he has! May God continue to bless you and your family in all the days to come.

  4. 5

    Fear not about kids teasing your kids. We underestimate children. My brother grew up with a friend who has cerebral palsy. By 3rd grade he went from double crutches to being confined to a wheelchair. His friends didn’t care. They all just adapted, and they always included him. Then middle school came and hundreds of strange kids added to the mix. Not one of those guys would let anyone say a thing bad about him. All these years later and although everyone went their separate ways after H.S. they still keep in touch and get together occasionally. P.S. the boy is now a man, and is a successful college grad.

  5. 6

    My daughter was not born with her disabilities, they are as a result of a choking accident at 1 year old. I would take back time if I could, but since I can’t, here we are. I am not Christian, but I see how big our life is now, and how different and amazing we are and how many people we touch, and what a unique opportunity this is. Not easy! But, neither is the rest of life. Oh, and my girl is also an identical twin. Blessing and a curse!

  6. 7

    I don’t even know what to type. I really have been in tears reading through all of these. We just go through life, day by day, hardly realizing how different we really are. On occasion it is sweet to reflect on it.

    My son Carsten is a little person (dwarfism). I think he was probably 9 or 10 before it really hit me that other people look at us differently. We were at a theme park and I guess I had picked him up several times to get water and to look at various things because while were at the food hut things got real interesting. Without thinking I swung my arm out and made a step out of my knee. Carsten grabbed onto my arm and pulled himself up onto my knee so he could read the menu. While we were ordering I heard someone crying and telling someone they were sorry. I turned around and this woman behind me was sobbing and holding her daughter tightly. She said earlier she had fussed at her little girl several times about being held. The little girl who was smaller than my Carsten was tired of walking and her mom said she had just gotten tired of carrying her. Then she said she saw me lifting Carsten up at every exhibit and at the water fountain. Then later I carried him on my back because his short legs couldn’t keep up with our pace. She said she felt so bad that she had fussed at her daughter earlier. She said we had made her realized how blessed she was that she could carry her child out of leisure and not necessity.

    I walked away stunned. I had never before realized that it was strange to do those things. It was all second nature. I knew no different until it was pointed out to me.

    I guess I typed that to say that we do what we do out of love for our kids. We don’t see it as a chore. It is just what we do. I guess it is nice on occasion to realize just how blessed we are to have such special relationships with our kids.

    Carsten is almost 15 now. I wish he would still let me carry him.

  7. 8

    Both of my children are special needs. My almost 10 yr old is high functioning autistic and also has ADHD. My 7 yr old has ADHD.

    It took till my oldest was 5 years old before we found out he was autistic. He would bang his head on every hard service. He was getting frustrated with no being able to tell us what he wanted.

    We thankfully got the help he needed.

  8. 9

    My daughter’s special needs are masked by no physical indication. So people meet her, speak with her and assume all is well. When we try to explain her special needs we are given a suspicious eye. She is the product of meth exposure, Reactive Attachment Disorder, and spending her first 20 months of life bounced around in foster care. The effects have been difficult on her and her perception of the world, and they have been difficult for us, her adoptive family. Here is a little post I wrote awhile back.

    http://blujeanmama.blogspot.com/2010/08/foster-friday-pearl-of-great-price.html

  9. 10

    My story started 3 1/2 years ago when my twin daughters were born premature at 29 weeks. We had only found out about five weeks before that that Brooklyn had a heart defect and would need heart surgery when she was born. She was born way too soon at only 2lbs 6oz. She survived open heart surgery, but developed an infection and passed away at 6 weeks old. You can read her story here: http://babybrookalee.blogspot.com/2008/12/last-post.html

    Aubrey, her twin, was healthy despite being so premature. We struggled with feeding and she stayed in the NICU just past her due date. We were fortunate to have Regional services following her development. At a year old I knew something was wrong with her speech development and we added a speech therapist into the mix of Ot and Pt services she was already getting. At 2 1/2 when she wasn’t talking yet she was diagnosed with suspected Childhood Apraxia of Speech and oral Apraxia. It’s been a little over a year since that diagnosis. We went from being unable to immitate any sounds in October to about 90 words today. You can read more about her diagnosis here: http://aviewintoourlives.blogspot.com/2010/04/forest-and-trees.html

    I never imagined having two children with special needs. I hated when people would tell me, “God only gives you what you can handle.” I don’t want to have to handle this I told myself out of selfishness. Many, many times I have cried over our struggles and loss of Brooklyn. But I truly know in my heart that my two special girls picked me to be thier momma. And I wouldn’t have it any other way! =)

  10. 11

    Special Needs? That was often used to describe me.
    Little Yellow School Bus Rachel.

    But I began to realize that people in general are broken. They are hurting and incomplete… and every single one of us have our own “disability”.

    It’s helped me when I sit down in tears after realizing that my toddler got his arm stuck underneath the bathroom door and was crying for several minutes until I located him… to realize that we ALL struggle with something. That the “perfect” or “typical” people we compare ourselves to, are anything but.

    My mother will tell you (with a wink), that God only made me deaf to keep me from taking over the world. I wholeheartedly believe that God has a reason, a plan, and can make something beautiful out of something the world sees as broken.

    Special Needs? Maybe.
    But I have learned compassion through it. And I refuse to waste the hard stuff.

  11. 12

    I believe that by being around someone with special needs or having special needs yourself makes you more aware of what others with special needs endure. And this makes you more understanding, accepting, and compassionate. My mother developed Lupus when I was young. This is an anti-immunity disease that attacks the body. There are several different types. My mom was afflicted with this disease that not only hurt her inside by inflicting pain on her joints, but gave her “butterfly sores” on her skin. Though this disease is not contagious, people still looked at her as though she were a leper. I remember the stares she would receive growing up. One time, she was using the pay phone and walked away. The man next in line told my brother not to use the phone because the lady who just used it had sores all over her. Well, my brother had to explain what she has and that it’s not contagious. Growing up, I was mad that people treated her differently. However, Lupus was not very common and had my mother not developed it, I wouldn’t have known anything about it. So, I grew to understand the way people reacted. To help calm strangers’ nerves, when I’m out with my mom I’ll grab her arm and hug it to show people that she is not contagious and to give my mom comfort who feels insecure in public a lot. I think as moms and dads, we need to make our children aware of people who may have these conditions that may seem scary but really aren’t. We should expose our children at a young age to those with handicaps and special needs and explain to them what is going on and that they are just regular people and deserve to be treated with respect, like everyone else. We should teach them that they are never to be stared at, taunted, or laughed at, EVER! And it’s OK to ask questions and learn more about it. But, again, had I not grown up around someone who had a disease like Lupus, I probably wouldn’t have had this understanding. And in some way, this makes me grateful.

  12. 13

    Would you consider highlighting a family with a child who has epilepsy?

  13. 14

    My youngest son, Max, has autism. I had no idea how much I took for granted with his older brother, until my wee Maxi came along. His brother, Zack, has always been ahead of the game, with everything language/social related. It was a shock to the system, and one that their dad could not handle, so he left.
    My mum has said to me recently, having Max has made me into the person she always knew I could be. I don’t think it gets better than how life is right now! Yes, it is difficult at times, but every small step for Max is a giant leap for all of us! He’s 4 in 7 weeks, and in the last month has finally started trying to copy what I say when I repeat it! Only I can tell what he’s saying, but I don’t care – he’s trying, and he’s succeeding!
    Zack is such a compassionate, empathetic, and caring big brother, and son, too. Having Max as a little brother is hard for him at times, but it’s also helped him to become the sweetest, most genuine 6 year old boy I’ve ever met! <3

  14. 15

    I have a story about a friend’s daughter named Chloe.

    Chloe and her twin sister Samantha were born on August 10, 2006. The girls were born premature at 29 weeks and barely weighed 2 pounds. They spent the first three months of their lives in the NICU. Soon after they came home, their parents began to notice differences in their development. Sam was standing up in the crib and was beginning to crawl, but Chloe was not. Chloe could not open her hands and her legs were stiff and rigid. After many doctor visits and an array of tests, Chloe was diagnosed with Cerebral Palsy or CP. The doctors said that Chloe “might” be able to walk with assistance by the time she was a teenager, and if she was “LUCKY,” would someday walk on her own.

    After the initial period of shock, disbelief and general feeling of hopelessness wore off; her family decided that that diagnosis was not good enough. They set out on a mission to do whatever it took for Chloe to have a normal childhood/life.

    The Orrets began seeking out a variety of traditional and alternative therapies for Chloe to try. After experimenting with everything from physical and occupational therapy, to aquatic and horseback therapy, her parents started seeing results.

    Chloe’s amazing results sparked a need in her parents to do more to help other children with disabilities. The intensive therapy center that they took Chloe to everyday was over an hour away in Ft. Lauderdale. This inspired her parents decided to open their own developmental therapy center for the Miami community.

    Blossom’s Developmental Therapy Associates is a center created by Claudia and John Orrett in conjunction with their daughter’s physical therapist and inspired by their daughter Chloe. Since then Chloe has had major spinal and muscular surgery on both her legs and with intensive therapy she now rides a bicycle, plays tennis, rock climbs, swims and most importantly, she is now WALKING, unassisted, with her sister Sam in her elementary school. Chloe inspires her classmates, teachers, and everyone that she meets to remember that life is what you make of it.

  15. 16

    I am the mother of a child with cerebral palsy. I have created a blog as a place to share some of my thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Each month I will feature a child with special needs and share their amazing story. Please read, share and follow. You might find yourself inspired by the incredible lives of some truly remarkable children!
    -Julie B
    http://throughthetulips.blogspot.ca/