“I think it's impossible to know what you're getting yourself into when you become a foster parent. What we thought we wanted was one perfect baby. We already had two biological children, a daughter and a son with autism. We were planning to adopt quick and get out of foster care, easy as that! So after adopting our perfect baby girl in 2016, we didn't know that soon our hearts would be willing to open again, none the less to a Primary Medical Needs (PMN) child we heard about on social media. On our regional Facebook page there are constantly posts asking if somebody has a bed for this child or can make room for a sibling set. I normally scrolled right by those kinds of posts, but this one I couldn't ignore. The post read, 'child waiting in hospital for 2 1/2 months, can't find placement, has no femur bones and is considered medically fragile. The hospital says he has just a few more days until they HAVE to discharge him due to space.’
Well, I commented for more information but after hearing the extent of his medical needs, we decided it was just too much for us to take on in addition to the three other children already in our home. Somebody else would step up, I was sure of it, they had too. The next day another post rolled through my feed, and then one more the day after that – all from different people pleading the same thing: 'This baby needs a home today, and there is not one for him.' So now it was time that I called, made this real, I wanted details. The good, the bad, the ugly. What's his prognosis? Why should we do this? Could I do this? Nothing sounded good on paper, the hospital had never seen anyone quite like him. They said he wouldn't walk, he may even have fetal alcohol syndrome, but he needed a home, TODAY. After calling our agency we found out that with a little extra yearly training, it was possible to change our license to take Primary Medical Needs children.
Then his CPS nurse called me back. I assumed she would try to talk us into taking this baby, whether it was the right choice for our family or not. She talked to me for what seemed like hours. Giving me information and answering all of my questions. She encouraged me with her own stories of adopting 3 children, the progress kids with physical disabilities make and the amazing medical technology available today. She talked me into saying 'yes' that day, but she didn't have an agenda. It wasn't just because it was what he needed, it was because she took the time to make us feel comfortable and capable of being what he needed.
So now we had made our decision, but what would our friends and family think of us? We had just adopted our 10-month-old and said goodbye to a long term placement within the last month. We had told everyone that what we really wanted was to step down from being foster parents, go back to our normal life and quit. Quit the visits, the paperwork, the rules and uncertainty; but this small baby boy made us realize we couldn’t quit yet.
On a Tuesday he came through the front door. While my heart was pounding from uncertainty and fear, it was also pounding from the excitement of welcoming a new baby into our home. He was adorable, but many things stood out about him. He was tiny due to being born at 32 weeks and missing both his femur bones and hips. His head was misshapen from laying in a hospital bed for 2 1/2 months, and he had double amniotic bands around both feet causing more uncertainty. I feared everything. Was I holding him right? Was he in pain? Could I really do this? The caseworker left after telling us his family was completing a homestudy and would soon be ready to take him. Immediately our hearts were guarded and we felt a small sense of relief knowing this child would soon leave to be with family.
When my two big kids got home from school I introduced them to the new baby. Right then all of my worries about how they would react to him went away. Of course they were curious about his legs. They had a few questions, but mostly, they just loved him. Each one took turns holding him, asking to keep him forever and fighting over who’s room he would sleep in that night. My 5 and 7 year olds did not see a physical disability, they saw their brother, even if only for a little bit.
As the months went by we found him to be the hardest baby we ever had. He cried, a lot. He was sick all the time, never slept, had constant appointments and limited recourses. Bilateral PFFD class D is rare and each doctor gave a different prognosis. One said he would be wheelchair bound for his entire life, one suggested surgery alongside prosthetics and another said he had a similar patient playing high school football, in his own way of course. As confusing as it all was, none of that mattered. In between medical appointments, therapies and caseworker visits, we were falling in love with this child that we had so strongly doubted our ability to care for. Our commitment grew, our hearts opened. He wasn't just a medical needs placement that needed a bed. He was our son, and we made the decision that we would give all we could physically, mentally and financially, for however long he was with us.
'The kinship placement isn't going to work out. Would you and your husband be willing to adopt him?,' the caseworker asked during our monthly visit. The answer was 'yes.' Even with the unknown ahead and the reality this might not be an easy road to walk down, I didn't need to ask myself 'could I do this?' We were ready to commit to journey for a lifetime with our son.
By the time he had been in our home for a year, we saw him meeting milestones he wasn't supposed to. He was crawling, in his own way of course, and Fetal Alcohol Syndrome had finally been ruled out. We watched this small, sickly baby turn into a healthy, happy toddler. He talked, he laughed, he threw tantrums and did everything else the other kids his age were doing, everything besides walking.
On November 15, 2017, we adopted our son during National Adoption Day after 522 days in foster care. We named him Charles in memory of my husband's granddad, a name we had chosen long ago but assumed we would never have the chance to use. He was officially our son. He was no longer a case in the system, a medical condition or a prognosis, he was finally just Charlie.
After he was adopted he started crawling differently, up on his feet using his hands for balance. Then he started standing up without any help. He was determined to do what his peers were doing. He learned how to ride a scooter, walk with a walker, climb the stairs and adapt to a world that's not made for him.
Following Charlie's 2nd birthday he stood up, without his walker, and took 6 steps. That's 6 steps with having less than half of his legs. That's 6 more steps than he should have taken. Those 6 steps were the first of many, and any fear we had for his future instantly faded. He opened our eyes to what love, commitment and determination can do for a child. We have also learned never to define someone by a disability or put them in a box of what they 'shouldn't be able to do.
Today Charlie is still 2. He loves to swim, eat hotdogs with ketchup, play outside with friends and he is slowly but surely working on walking. I have no doubt he will get it and he won't just be walking. He will be running or playing football or soccer or doing whatever he wants to do. I know there will be more hurdles to cross in the future, but for now he is my sweet, sensitive boy who walks on his hands, who rides a scooter better than other kids his age, who loves his momma and who will defy every single odd given to him.
I would encourage parents with able-bodied children to talk about disabilities with them. Talk about how we are all made special and that just because somebody doesn't look or act like you, doesn't mean they should be treated any differently. I also want to let you know that it's okay for you and your child to ask questions. When people are pointing or staring, I use that time to educate. Usually after answering their questions and interacting with Charlie, they realize he couldn't be any cooler – even if he had femur bones. In our house we have a saying: 'no femurs, no problem,' and Charlie has definitely proven this true. He is breaking the stigma of what being 'disabled' is all about.”
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