One young woman has impressed me so much. I know I will never forget her. She has been through so much in a short time and has come out stronger. I have shared part of her story before, you can read here. There is so much more to this young woman and I wanted you to know more about her and her son. I wanted you to see how Bree faces the challenges of raising a brain syndrome child alone.
Bree, 24 –
What is life like raising a medically high needs child on your own? My two year old son has been diagnosed with multiple white matter brain abnormalities. What does this mean? It means the tasks you do without thinking about, such as using a cup or a fork, are nearly impossible for him. He keeps losing his ability to speak and use sign language so we have to start all over on learning words.
When we go to the store and a page comes over the intercom; he freaks out and starts biting me – it is his coping method. I have been judged for this because he looks perfectly normal on the outside. Which he is, it is his brain that is not normal. His doctors hope his brain will learn to compensate for these abnormalities because there is no treatment.
He also does not want to be held or cuddled or give hugs and kisses. Do you have any idea how hard it is to know you cant hug the life you brought into this world? Or comfort them with rocking?
The cause is unknown. He has SBBO (small bowel bacterial overgrowth). His bowel is allowing the bacteria found in the intestines back into his digestive track preventing him from digesting carbs, sugar or lactose. He has chronic diarrhea from this and is on a very expensive diet. Because of his body fighting this bacteria he runs a low fever constantly.
When you have a fever and diarrhea you cannot stay in daycare. He also has acid reflux and will randomly start puking if his acid levels get too high. So I lost my job because he is so sick.
He has reactive airway disease (likened to asthma) and anything can trigger an attack. When he gets scared he becomes tachycardiac, meaning his heart rate is double the normal, and his oxygen levels start dropping.
He is now in therapy and getting the help he needs and will probably be starting pre-k next year. Next time you see a kid crying and hitting their parents or biting them don’t stare or say anything. You don’t know that poor child’s story.
My son is also being tested for epilepsy on the 20th. I can’t even begin to tell you how many nights I have slept in hospital beds beside my son, praying that this ER visit will give us answers. He has had 7 IVs for dehydration. He was hospitalized for three days at three months old. He has had an adenoidectomy, upper and lower GI scopes, a brain MRI. All of which involved anesthesia.
Most of the time I was told it’s a stomach bug go home, he will be fine in a few days. I’ve been told I take my son to the ER too much but when he quits peeing, I take him in. When he gets dehydrated, his left kidney gets blocked.
It has been hell fighting for answers for him and we are finally getting them.