Prepare yourself….this is LONG!
I am so hesitant to even put this out into the world. While this is definitely not a secret..it’s not my family’s favorite thing to talk about. Well, actually it does involve my favorite thing to talk about…our sweet Ennie girl. I feel like we are getting more well meaning questions and comments now and that maybe it’s time to address it and tell her story (or at least part of it). Easter morning in 2017, my sweet baby was born…with a tiny little cry that quickly muffled. She inhaled a lot of fluid and they had to call a code for her. She did require complete resuscitation but was thankfully never without oxygen. Her doctors assured us that while she may not have been breathing on her own, they were breathing for her. I would like to say those few minutes were the scariest of my life…but she would go ahead and show us she had a few more scares left in her. After a long (but relatively short) NICU stay, we brought our baby home and had three months of complete bliss. After years of waiting, I finally had my third baby…our family was complete. She was the happiest, most content and perfect baby I had ever met. We would come to find out…she was actually too content. At her four month check up, everything went perfect. I was ready to load her back up and head for the car when the doctor asked if I had any questions or concerns. I told him that I didn’t really have any. Then followed it up with, “Well, I don’t think she holds her head up as well as her sisters did at this age. And she doesn’t really bare any weight on her legs. And…I’m sure its nothing but she doesn’t really make eye contact.” I said all of this 100% assuming he would tell me that I was overreacting. Instead he took her from me and did a few random things and said, “I think we need to get her in to see a neurologist.” And…just like that…life was forever changed in one sentence. Leaving the office, I told myself that I already knew it. And I did. I did know something was different this time but didn’t even want to admit it to myself. The next few months were a blur of doctors appointments, therapists, clinic visits…all of whom agreed something was going on. I experienced anxiety like I never knew possible. I researched everything known to man that came with her symptoms and not a single one of the searches pointed to anything good. Two very long months later we had an answer…actually that’s laughable we had an explanation but no real answers. We discovered that our sweet baby has a chromosome abnormality. She has extra material on one of her chromosomes. We don’t really talk about which one because if you don’t have a decent understanding of how all this stuff works…a quick google search will lead you down a very dark path. Been there, googled it! Thankfully, if we could have hand picked a place for her abnormality to be…I’m pretty sure we would have picked this exact place! Of course…we didn’t know this nine months ago. We were still in the dark path of google and the unknown. The short of it all is this…she had very low muscle tone, pre & postnatal overgrowth (she’s a big girl…likely to be between 5’10 and 6’3), developmental delays, eye issues, hearing issues, kidney issues and other small things. Thankfully she does not have some of the more severe things that can come with this. The reason she wouldn’t make eye contact was her eye muscles were too weak and she simply couldn’t see. At 11 months she had a small surgery on her eyes and praise God she can now see great! Her eye contact is perfect. She does have some muscle control issue with them when she is super tired or sick and they can turn in…otherwise her beautiful hazel eyes are now good! She couldn’t hear until she was 11 months which is when we had tubes put in her ears. We knew she had hearing loss but didn’t know the cause or solution until the tubes were placed. The surgeon said that the fluid build up was basically solidified and therefore preventing her from hearing anything…abnormally shaped inner ears is another thing to attribute to this chromosome “thing”. These tubes also put an end to the longest 2.5 months ever…that had her with a never ending (literally) ear infection, flu diagnosis, RSV diagnosis and two bouts of febrile seizures. And…I pray that all of you reading this never have to witness a baby having a seizure. Her first one left her completely unresponsive for 15 minutes (longer but that’s how long we were awake and aware of it). It was in the middle of the night and we thought she had, had a stroke. For those keeping up…that in fact would be the worst minutes of my life to date. This all makes me realize that I should still be thanking God daily for these tubes. My eye literally twitched for an ENTIRE month from all the stress of worrying about my baby…while I do thank God for her being better daily….you would think I could remember to be specifically thankful for these tubes! Anyway, back to the other issues. Her muscle tone and developmental delay is right at six months behind…she and my niece who is six months younger are about at the same stage. All of her physical skills have taken soooooo much work and effort. She has had months of therapy to accomplish any small task that other babies learn in 10 minutes. She has done everything slower than normal but the most important thing is…she is still doing “it!” This is something we didn’t know would happen when we first started on this journey. The research we have done says something like 30 people have ever been diagnosed with the same abnormality as her and so basically there are no answers, no expectations, no anything…it could be terrible or it could be minor. The technical terms for describing it…moderate to severe. We’re winging it and for those that don’t know me…I’m a planner, I’m a knower (there’s another new word for you). If I don’t know how something is supposed to go, I find out. God has really worked me over in this department. Rather than planning and knowing…we’ve been in a state of just being and seeing what happens…the unknown is terrible but I’m trying hard to embrace it. We have been in constant therapy since she was four months old…physical, occupational and now speech…about 3 appointments a week. We’ve seen every specialist known to man to rule out a whole array of other possible issues this could come with. She is currently army crawling all over the house and normal crawling small distances, trying to pull up, finally feeding herself (fine motor has been a major struggle for her) and babbling like crazy. We are thinking she will walk somewhere between 18 and 24 months but of course that is a guess even though I keep telling my husband to trust me…I’m basically a doctor at this point. 😉 She understands us. She communicates. She is opinionated. She is so head strong…if she wants to do it, she will. If she doesn’t want to do something, you are not making her do it. She is babbling and we have every reason to believe she will talk. Not hearing or seeing for the first 11 months will definitely slow things down…especially speech. We celebrate little things and weird things at our house. We see and hear people non-stop talking/complaining about their little ones getting into everything. At our house, when she’s getting into something we take pictures and text each other and everyone we know to show off her being a “normal” baby! I will never forget the day she started trying to roll over. It was the tiniest of movements…but I knew instantly what it was…and while it may have been weeks later (and months after she should have done it) before she actually did it…that little glimmer of hope was exactly what I needed right then and God gave it to me. He has been so good to me in that way (and a million other ways). When I’m feeling down and that we aren’t making progress as quickly as I would like, he gives me something…it might be small, but its something. And I love small improvements! I have been and will continue to be convinced that our sweet baby was not born on Easter morning by accident. God has big plans for that girl…plans that I think will bring hope to other parents that are going down that dark google search that we did all those months ago. I want and believe that they are going to find the case of a Missouri girl who proved that it is completely possible to live out a normal, happy life despite this diagnosis.
In closing here…know that most days we are all just fine…especially Enslie! She doesn’t know she should already be walking and she’s perfectly happy army crawling all over the place. She does get hostile when I can’t read her mind…most of the time I can and when I can’t, she doesn’t deal with it very well. She also thinks my entire existence should be dedicated to looking at her…and to be fair a large amount of it is. Some days it’s exhausting to think about having another appointment but without these therapists there is no way she would be as far as she is . Some days it’s exhausting to keep carrying around a baby that is half my size but I’m so thankful knowing that one day I won’t be. Some days, I get down about how much I feel “cheated out of” as far as just having her be a healthy “normal” baby…but the fact is…I do have a “healthy” and perfect baby…something so many women would give anything to have. We are blessed. And I don’t care why this happened…not at all. I’m not a “why” person. And…while we don’t know what her future looks like exactly…I know that I would not in a million years have ever wanted to be given a different baby…she is exactly what we needed and I’ll just keep trying to be the mom that she needs!
P.S. If you know a special needs mom…why don’t you buy her a coffee today! Chances are…she needs it! 😉
