July 2nd 2013 I wrote the post below. I have taken this from my son's page on facebook: All About Evan Schizencephaly Awareness. (now aspecialneedsblog) I am not going to change anything in it, this is just as I wrote it all those years ago. I have just extracted a few parts as headers.
July 22nd 2013
Evan became my son April 2012 at 2 months old. I was lucky enough to meet him at around a week old. Evan was named by my daughter and I before we were given his Ethiopian name a week later, Addis, meaning New. Evan was so very tiny; he was the tiniest baby I had seen in a long time, bundled up in blankets in the cot furthest away from the door to keep him warm. He cried lots and was only happy in my arms; it would hurt me every night I had to leave him to return to the guest house. Finally I passed court and he was mine forever. I cried so much when I was told, “You can go get your baby!”
The doctors said that Evan had colic and was a preemie, their answer to everything! In total we visited about 6 doctors, in Addis, China and the UK, including two health visitors and specialists. Nobody listened to my concerns about his continued colic like symptoms, projectile vomiting and the gut wrenching screaming that would make me hold him tighter, trying to ease the pain. He was of course eventually found to be lactose and milk protein intolerant, which I was expecting, but there was still a niggling feeling that something wasn't quite right with my baby, he was so strong and fisted, the screaming continued and he didn’t consistently follow objects with his eyes, (this was also noticed by one of the health visitors who I had been to school with, she was the only person who took my concerns seriously).
'....the gut wrenching screaming that would make me hold him tighter, trying to ease the pain.'
No training or any amount of adoption preparation classes could have prepared me for being asked, "Why was your baby born, when he has no brain? “ I was alone with Evan at the time, in a hospital corridor in China as I tried to understand what was happening. The next few months were like an unbelievable nightmare. A friend with medical experience repeatedly tried to explain to my 14 year old daughter and I what the doctors were saying. It wasn’t making any sense. He looked so perfect! I felt like I was living someone else’s life as my own planned future disappeared in front of me.
'I have grieved, shouted, cried inconsolably..'
I have grieved, shouted, cried inconsolably, and also been in a zombie like status. The baby I'd asked for, 'As young and as healthy as possible.' was not the baby I held in my arms. My dreams for my son were gone. Slowly I have realised that the dreams I had were mine, not Evan's. That from about 20 weeks gestation when he probably suffered a stroke which caused bilateral open lipped Schizencephaly (a malformation of the brain) my baby boy was never destined to play football, become a doctor or even to say mummy. Nothing could have prepared me for that.
Evan has about 20-30% of his brain, the rest is fluid. He is blind and has severe cerebral palsy. He is profoundly special needs. He is now 17 months old but is like a 3 month old baby. He cannot sit, or even hold his head. But he does laugh when I tickle him or bounce with him and he loves music. He also knows my daughter and I, close friends and family. He continues to amaze doctors who can’t believe that the brain MRI matches the baby they see.
'He continues to amaze doctors'
It has been suggested by well-meaning people that I could disrupt the adoption. I have been made to sit and consider the options. But to me it is clear, I sat in the court room in Addis Ababa, with my daughter and my brother, and I made a promise to my baby boy, a promise that I will honour for as long as I emotionally, and physically can. For a long time I tried to find someone to blame, to be angry at and there are still days when I wish I could shout at someone. But there is no one to blame. It was nobody’s fault. I have since found out on speaking to doctors in Addis Ababa and to the Orphanage director, who obviously feels awful about the whole situation, that if my son’s conditions had been noticed before adoption he would have been, ‘thrown away’ and ‘left to die’.
..he would have been, ‘thrown away’ and ‘left to die’.
So I could look at what happened to me as unlucky, but I have an amazing baby boy who looks in my direction and smiles, who shows me he loves me by relaxing in my arms and allowing me to comfort him. I have a baby boy who is very lucky he fooled all the doctors in Addis Ababa!
Many doors have closed for my family and I, yet different ones have opened. There are days when I struggle to think of my future as a single mum of a profoundly special needs child, who will need wheel chairs, hoists, standing machines, 24 hour care for life etc. etc. etc. But then on other days when he does something amazing like roll from back to front, or chew and swallow a bit of his birthday cake, I realise it is all worth it and he deserves happiness, love and a forever family, just like our healthy babies.
'..he deserves happiness, love and a forever family, just like our healthy babies.'
I said 'no to special needs' when I applied to adopt a baby but a healthy baby can never be guaranteed. Just like with a pregnancy, things happen, things go unnoticed, things go wrong. You have to always be as prepared as you can be for the unexpected, and to love and accept the child that comes to you, unconditionally.
Evan is so perfect; he has the most amazing eyes, gorgeous skin, beautiful smile and contagious laugh. He lay on the floor in his playroom recently as his new baby sister played with his hand, he seemed to look towards her and smile. He is now such a happy baby. From when he turned about 10 months, the pain (which I found out was a neurological one) stopped.
I am so very proud of my three children and love each of them so very much. My life 2 years ago was very different, and I could never have imagined at 16 when I made up my mind to one day adopt, that this would be the outcome. We never know what life will throw at us, but we keep going and there is always something to smile about.
Michelle :-)
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