Brandi’s Story–I Took A Second Look

Our family had just grown to 3 kids after bringing home Asher from South Korea a few months before. I couldn’t believe how much adoption completely changed my world and heart so much and soon after he was home I started researching and advocating for children listed with our adoption agency. We were still recovering mentally and financially from the last adoption, but something about these kids kept pulling me in over and over again. After showing my husband tons of pictures and sharing their stories, he finally asked one day, “So which one is ours?” I was over the moon to start another adoption!

We looked at our agency’s waiting child page and decided we would just start our dossier so we could be matched with a young child with needs we were open to…minor heart conditions that were easily repairable and other minor conditions. We made it through our dossier and then waited to be matched off the shared list. During this time I was still receiving emails from Rainbow Kids (this is our we found our first son!) of children that matched our needs we were open to. I received an email that July of a boy that had a heart condition listed and I just couldn’t get over how much he looked like our other son. So much so that I took a picture on my phone and was showing him to everyone. I couldn’t forget about him and decided I would have to email our agency and find out a little bit more about him. He was listed with our agency. Why hadn’t we seen him before?

We looked at our agency’s waiting child page and decided we would just start our dossier so we could be matched with a young child with needs we were open to…minor heart conditions that were easily repairable and other minor conditions. We made it through our dossier and then waited to be matched off the shared list. During this time I was still receiving emails from Rainbow Kids (this is our we found our first son!) of children that matched our needs we were open to. I received an email that July of a boy that had a heart condition listed and I just couldn’t get over how much he looked like our other son. So much so that I took a picture on my phone and was showing him to everyone. I couldn’t forget about him and decided I would have to email our agency and find out a little bit more about him. He was listed with our agency. Why hadn’t we seen him before?

Then I read the words: Cerebral Palsy.

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Whoa. That was not a need we were open to. We were not equipped to raise a child with physical disabilities. I didn’t know anything about Cerebral Palsy. He was only 10 months younger than our other son. This was not our son. We passed like so many others had before.

But, I just couldn’t forget about him. His file was old and bare. I sent the whole 3 pages of information to our pediatrician and asked what she thought. At best, he would walk with equipment after years of catching up. At worst, he wouldn’t move developmentally beyond a toddler. We had a big decision to make. Our paperwork was already done and in China and if we waited another month, we would be matched with a younger child with minor needs. Or we moved forward with a child with a completely unknown future and barely any information at hand to decide with.

You can guess what happened here.

We sent our intent to adopt Jaxson days later and were completely at peace with whatever came. We hoped for an update, but only got 2 sentences saying his legs were extremely stiff and he didn’t have a heart condition (there was an “error” in the posting, which is why he was emailed to us). I tried to take the time between travel to learn all I could about CP, and quite honestly it was pretty scary. In general, googling medical terms while waiting is probably to blame for the extra 5 pounds of stress eating I did! The range of abilities was so wide and not knowing anything about him or his past birth history it was hard to know what to expect. It was easy to get scared about all of it, but we still felt like it was all going to be ok.

At the end of November, 2012, we boarded a plane to China, anxiously excited to get our hands around our little boy. I brought many toys appropriate for 2 year olds, snacks and other fun things I thought he would enjoy. We sat waiting in the government lobby for the officials to bring him in. When we were finally handed Jaxson, he was very hard to hold. His legs were completely straight, so you had to hold him like you were hugging a tree. He was in 5 layers of clothing, so it was hard to figure out how big he was. When we got back to the hotel, he had fallen asleep, so I cuddled with him and started trying to de-layer him. He was so tiny. Barely 19 pounds and 2 years old. His legs, while stiff, were so thin you could easily wrap your fingers completely around them. His muscles atrophied from nonuse. When he woke, we tried to get to know him by playing games with the toys we brought, but he just looked right through them. He had no idea what to do with them. We sat him on the floor to play and he just fell right over. We tried to feed him snacks, but he just put them in his cheeks, clearly not knowing how to chew or what to do with them. His entire mouth was filled with rotten teeth from being left lying on the floor with a bottle for 2 years. He would head bang to the point of bringing blood and bruising himself.

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Oh lord. What have we done? At this point his being able to run and play was the last of my worries.

He was very quiet and would speak words, but obviously we had no idea what he was saying or if it was even words. I knew I was scared, for him, for our family and for what might lie ahead, but I also knew I loved him fiercely. This was my son whether he ever spoke a word, sat to eat or took a step.

Coming home began so many doctor’s visits and assessments. A child developmental team came after being home one month (and he was already making great gains just being with a family) and assessed him at a 6 month infant level developmentally. Those words stung greatly hearing them talk about how behind he was and all the testing and help he would need just to *maybe* catch up. No one would talk about his future. I couldn’t tell if they just didn’t know or were sparing my feelings of hopefulness.

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I got calendars to keep up with all the appointments and tried to stay above water while making sure he received all the help he could and keeping up with our other 3 children. We were set up with a therapy program to help. We did more research. We did more medical tests. We learned Jaxson has many empty cysts & holes in his brain in areas where his motor development is. We were given terms like spastic diplegia, periventricular leukomalacia, strabismus, estrophia, developmentally delayed & possible autism.

But, no one told Jaxson this. Every week there would be gains, sometimes small and unnoticed by the average person, and sometimes huge. He stopped hoarding food in his mouth and started chewing. He became curious about Asher’s toys and started grabbing them…looking at them…moving them…watching Asher to see what he did with them. After months of therapy he was able to sit on his own and crawl. He was even starting to use a walker. And his language exploded! He was speaking in full sentences!

A year later Jaxson is walking in his walker, although he still uses his wheelchair for longer distances because he tires. He attends preschool. He can recite his ABC’s and sing “Don’t stop believing”. He loves to play cars and trains and is known as an expert climber. He has friends and playdates. We’ve been home a few weeks from St. Louis where Jaxson had his Selective Dorsal Rhizotomy surgery to remove the spasticity in his legs. He has months of hard recovery ahead, but his surgeon feels he has the possibility of independent walking in 2 years. We know Jaxson will achieve anything he wants to.

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Having a child with CP or physical disabilities was certainly not on our original list of special needs and comes with its own set of challenges, but we are forever grateful we looked again beyond the scary “what ifs”. Jaxson makes us appreciate so many things we take for granted and brings so much adventure into our lives. Many people tell us how we have made such a difference in the outcome of his life, but he has changed our lives in ways unmeasurable. We are incredibly blessed by him!

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