Today I met the most amazing mom. Her name is Stephanie, and her sweet baby boy is named Micah. Due to lack of oxygen at birth, Micah was born severely brain injured. He will be a year old on Sunday, but unlike other 1 year olds, Micah is not sitting up or crawling or taking his first steps. Micah is just now learning how to eat solid food through his mouth, although he takes in most of his nutrition still through a feeding tube attached to his belly. Micah is just now starting to turn his head towards sound, and is also starting to make eye contact and smiles.
Stephanie is doing the same brain development program on Micah that we did on Audriana many years ago when she was brain injured in our car accident. This program takes about 7 hours to complete each day. It is pretty much done the entire time the child is awake, actually. It is done by the mom (and dad if he’s home to help) and also needs the help of volunteers for a lot of it (which is why I was there today) because it takes three people to “pattern” the child (manually moving the head, arms and legs in a cross-pattern crawl) which is done many times throughout the day.
Last year when Andrew was just about two months old, I became friend’s with Micah’s grandmother (whose son was on Alex’s soccer team) and she told me all about Micah and how hurt he was. Micah was only a week old at the time. I was so sad to hear of Micah’s traumatic birth and all that went wrong to cause him such harm to his little brain. It just wasn’t fair. In the womb he was completely fine — and then things went wrong as he was being born and he was cut off from his oxygen supply which is what caused his brain injury. My heart just went out to his mother. And having Andrew at the time, who was so close in age to Micah, only made me hurt more for Micah and his mom. I would look at Andrew and see him interacting with me, laughing and giggling, rolling over….all the normal things that healthy babies do….and then I would think to Micah and wish that he could do these things, too. I immediately told Micah’s grandmother about the book that lead us to an institute in PA where they worked with brain injured children because I knew without a doubt that Micah’s best chance at recovery would be to do this aggressive program ….starting right now. They have since taken Micah back east for evaluation and started his program in May.
Stephanie is a young, single mom — just 21 years old. Her friends aren’t a support to her because they are all 21 years old, too, and into going out, dating, etc. Stephanie lives at home with her mom, and together they carry out Micah’s program everyday. Stephanie is just now reaching out for help from volunteers. And I was there today for the first time. I’m working on getting her more volunteers, as I know from experience that the more you have, the better.
Micah is the size of a 4 month old baby. He is very peaceful and seems to look at you when you talk. At least when I held and spoke to him, he seemed to be staring at me and listening to what I had to say. He really liked it when I used my long nails to massage his head. He would open his mouth in excitement and arch his back — his way of expressing joy. I fell in love with him instantly. He has the sweetest face and beautiful hazel/light brown eyes. I swear I just wanted to take him home with me and hold him all day long He only cried when we did his patterning — he whined a lot through it, and at times got quite upset (which is typical….especially with babies) It’s hard to keep doing the patterning when he’s crying and is so upset — someone who didn’t know better would think we were hurting him — but when you know that what you are doing is actually helping him, it makes it easier to carry out.
Stephanie is one devoted mom. I have so much respect for her and what she’s doing for her son. Micah’s program gets done every single day by her. All day long she masks him (which is a little bag that goes over his mouth and nose that he breathes into which helps increase the oxygen to his brain — we did that with Audriana as well, about 90 times a day, 1 minute durations, with 5 minutes breaks inbetween) and she does tactile stimulations all day long (rubbing different textured cloths, brushes, etc on his skin) and she does visual stimulation during the day (to help his eyes develope better vision ) along with the patterning (which helps with brain development) This program is very hard, and I had a hard time with it and I had the help of a husband’s support. Stephanie is an amazing person. Micah is so blessed to have her for a mother! I found myself getting teary-eyed while I was there, because I could see the love she has for her son, and I know the heartache of having a child who is not “normal”, and I know the feelings of uncertainty and the guilt you get sometimes when you think you aren’t doing enough to help your baby get better. I know how important it is to have unconditional support during this time Unfortunately, there will be people questioning her, doubting she is doing the right thing by him, and routinely asking her “how long” she is going to do this program….and I know how hurtful that can be. (I wish those people would realize that the hardest therapy to do IS the one Micah is doing — why would she pick the hardest, most time-consuming therapy to do unless she has researched and found it to be the most aggressive and that it provides the best chance for him to have a normal life?) I’m so glad I met her, because at least in me she will have someone who really understands what it is she is doing and why she’s doing it.
I’ll be helping with Micah’s program again this week. I can’t wait to go back. I wish I could help everyday, but they live a half hour away from me…and the freeway is always tied up which makes it a longer drive. Being there reminds me so much of when we did that program with Audriana many years ago. We did it for 2.5 years, everyday. It was without a doubt the hardest 2.5 years in our lives! But I also believe it was the most important 2.5 years in our lives.
I know that Micah is going to have great improvments over the next few years while he’s on this program. He is so young and his brain is still so pliable. As his brain grows, more connections will be made thanks to all the input that Stephanie is doing everyday with this program. I am excited to be able to be a part in helping with that. I will have to keep Micah in my daily prayers, and also pray for his mom to stay strong through it all. Whoever is reading this, please pray for Micah. Pray that his brain continues to heal and develope normally. And pray for Stephanie. She’s got a long road ahead of her.