Just wanted to do a quick introduction and let you know a little bit about me and why I have decided to start this blog.
I'm a CRAZY mother of 6! Yes 6! Being one of 8 children myself, this has always felt normal to me. Love having children running around me and asking me silly questions and making me laugh. Don't get me wrong there are days where I feel like I could run off and live in the wilderness too.
The children are Emily (12), Amy (10), Charlotte (8), Isabelle (5), Jack (3) and Bonnie (9 weeks).
We absolutely adore all of our girls. They are truly the most lovely children we could have ever asked for. We had always wanted a son as well to add to the clan we had going on and all the girls were desperate for a little brother. On January 29th 2008 during our 20 week scan we heard the words 'Oh I can tell what this little one is, its a BOY' I burst into tears with absolute joy. Of course we would have been just as blessed with another little lady but we were just thrilled at having a little man on the way.
Our special little fella arrived on June 21st 2008 after an uneventful pregnancy (uneventful aside from the desperate craving to smell sponges hmmm!?)
For months and maybe even into the first year I still couldn't believe that we had a son. His sisters were equally as in love with him as were the extended family. I think maybe some of this joy covered some of the little pointers that things weren't quite as they should be. After 4 girls as well you can put some of it down to the difference in gender as well.
At his 9 month check he still wasn't sitting very well and was exceptionally tiny for his age. The health visitor and nursery nurse that we saw were so sharp and accusing that I ended up in tears. Telling me that I wasn't feeding him enough and we needed to feed him mash and gravy to bulk him up. They asked us to go back and we never did because of the way we were treated. Looking back on it now maybe we should have as the process of diagnosis may have got underway much earlier.
At 18 months, Jack came down with a chest infection and was really unwell so we took him to see the GP. As Jack still wasn't walking or talking at all and was still very tiny we were referred on to the paediatricians at the hospital. At this point neither of us were particularly worried as he was just our Jack.
For a long time we were back and forward to various departments and each time they would notice another little abnormality with Jack which was just heartbreaking as all you want to hear is that everything is fine.
We were sent on to another hospital to go under their genetics department. We had a full chromosome test done and were told that everything had come back normal so again we were no clearer.
At the beginning of this year we had another chromosome test done which our geneticist said was unlikely to give us any more answers as he was getting more convinced that it was a gene issue rather than a chromosome issue. In the meantime we had become pregnant with our 6th wonderful little person.
In May of this year we were sent the letter that we had been expecting although half hoping would never come, they had found something with the blood tests and would like to see us in June. Everything went through my mind and all I wanted was to walk in and be told exactly what was wrong and what the long term prognosis would be. When we were told that he had Mosaic monosomy 21 (One half of chromosome 21 decided to wander off from some of his cells) it came as a real shock as there was literally nothing they could tell us about it. Its so rare that we havent been able to find much out about it ourselves which at first was difficult but I now believe that it has made it slightly easier just to take a day at a time and see what happens. Which in fairness is all that anybody can do anyway as you never know what is just around the corner.
I cant begin to describe the emotional roller coaster that myself and Tony have been through with this news but the one thing I can be totally sure of is that he truly is a special special little man. I knew how blessed we were to have our son but we could never have begin to imagine what a miracle he would be and how unique.
I would be lying if I said that each day is easy and that you can ever get used to the fact that your child has any type of disability but you can come to live with it and also appreciate just how special these children truly are and how blessed the families are that contain them. I wanted to start this blog as a little insight into raising a big family and also so that anyone else that might go through the journey we have to find their child has mosaic monosomy 21 can have a little somewhere to read about another child as we haven't been able to ourselves.
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