For my first blog I thought it would be a good idea to share our birth story, to show you where our journey with down syndrome began……………..
I guess River’s birth story is pretty unique, in the sense that we didn’t know he had Down Syndrome until he was 6 months old. As a mother I sensed that something was wrong, I just had this feeling, even though nobody else suspected a thing. I would look at his pictures and feel guilty for thinking he looked like he had Down Syndrome, for feeling that something was wrong.
The birth was straight forward and very fast, the midwife nearly didn’t make it as River was so keen to get into this world! And his father didn’t make it, I was 38 weeks and Reagan was on a long haul flight on his way to the Uk. May I add he missed his first born to!!! Anyway, everything went fine and I was tucked up in bed with him a few hours later ready for our first night together.
The following few weeks are a bit of a blur. I just felt so happy and complete, and River pretty much immediately just fitted into our family. I recovered very fast and we were out and about with him from 2 days old, we were just having so much fun. But still I had that niggling doubt at the back of my mind.
When River was about 5 days old, our midwife visited and suspected that something wasn’t quite right, that River looked a bit ‘funny’. She sent us to the hospital to be checked over properly but we were told that he was completely fine and healthy. We had breast feeding issues (which I now know was due to week muscle tone), but with a LOT of determination we got through that and he fed like trouper. He had all his health visitor checks and nothing was noticed, he has his immunizations and nothing was noticed and at his doctor review nothing was noticed. Although the doctor did make a comment about his Asian eyes! He failed his hearing test and saw a specialist but over and over again we were told he was just fine. As his mum though I knew he wasn’t just fine, but I guess I was happy to believe what I was being told. Not once did anybody recommend a very simple blood test!
We returned to Tanzania where our businesses are and just got on with life, we were just insanely happy. Skyler adored his new brother and we felt so complete as a family of 4.
At 6 months old we took River for a check up with a German doctor who was fantastic, she suspected straight away that he had down syndrome. I felt terrified and relieved at the same time, finally somebody else suspected something. Reagan came home straight away and that day we mourned the life we thought our son would have. Marraige, kids, career. But then we realized that nobody ever really knows the path their children are going to take, how their lives will turn out. River was still just River, just with an extra chromosome. I can honestly say we were sad for a day, we allowed ourselves to be upset for a short time and then picked ourselves up. River and Skyler didn’t need to see us that way, to them nothing had changed!
The next day we traveled to Nairobi to a great private hospital and we met a fantastic doctor. He knew straight away that River had Down Syndrome and did numerous tests on him. Luckily apart from that extra chromosome River is a very healthy little boy. He sent us on our way and told us to just enjoy our baby boy, we have a lot to thank that doctor for, he sent us on a positive road! We can’t spend our lives worrying about what health problems River may or may not face in the future, we will face them when the time comes.
We decided to turn that weekend into a celebration of Rivers life, and it really is a wonderful life. He has a family who love him more than they can describe, an amazing big brother who worships him and our home is always filled with laughter. We visited the elephant orphanage and the giraffe sanctuary and just had a brilliant time together.
We really don’t want people to feel sad or sorry for us, we don’t need pity. River may not have a ‘normal’ life, but he still has a life, and with every breath we have we will make sure it’s a good one. I genuinely believe he was meant to be ours and we will make sure he has many, many opportunities. We’re grateful we have found such a wonderful doctor and are really happy that River doesn’t need any medication or health treatment for now. We’ll take what comes in the future as it comes. Nobody ever knows what life is going to throw at them!! For now we have 2 happy little boys and we intend to enjoy every single second that we spend with them. Please don’t feel awkward or sad for us, we’re happy to talk about it and certainly don’t intend to hide it away. River is still just River and he is pretty awesome!
It would really help raise awareness if you would talk the time to share my blogs and follow us, I would really appreciate it! You can also follow us on Facebook http://www.facebook.com/IamRiverDownSyndromeAwareness and Instagram – instagram.com/iamriver_downsyndromeawareness
Thanks so much for being part of our journey!