I would like to talk about life living with SMA and the journey we have travelled so far.
Charlotte is a sister to her twin grace and big sister to Lucy. We were told 3 days before Lucy was born about SMA. This was an extremely hard time, not only trying to deal with the diagnosis and what the outcome will be for Charlotte. The thoughts of leaving Australia to try clinical trials in the US, (Now looking back very unrealistic), the thoughts of how long will she be here? Then the weight of giving birth to another child and the waiting to see if Grace and Lucy also had the disease or not. A heavy cloud hung over the family.
It was a relief when Grace and Lucy were given the all clear, in a way we felt guilty for being happy. Our family had a choice to make sink or swim. It would have been so easy to choose sink but swim we did. This is when our friendship with Julie and Ross started. Hours were spent on the internet talking to strangers in Heywood about SMA, soon turned into a friendship and we started seeing life other than SMA. Talk about treatment and how they were getting SMA recognised within the community soon turned into a talk about the lambing seasons and the drought. It may sound awful but listening to Julie and Ross and what they had to go through every night with a child with type 1 was very hard to listen to and when Montanna passed away we did realise how lucky we were to have a type 2.
It was at that point that we decided to swim, we may not have the years to create memories, and so lets start creating quality moments every day. The motto “where there is a will there is a way” is what we live by. Another great friendship formed, thus Ronald McDonald house in the hunter became our holiday house. We started to go every 8 to 12 months visiting specialists in all areas and a therapist. In total now I think we are up to 9 names to remember. The visits are now down to 4 months but still Ronald McDonald house welcomed up with open friendly arms. Ronald McDonald families also have become our friends and some of them are here tonight.
Charlotte started physio, hydro and o.t. We sold our home in Armidale and built a house to cater for Charlotte and her wheelchair. At the age of 23 months in August on a snowy day Charlotte drove her first powered chair, chasing snowflakes with her sister. This is one of the many happy tears I have cried.
At the age of 2 and a half years she was donated a gattor walker. Tears rolled down my face as she walked into the room and showed the Lion club her new walker. There were many tears for little moments to enjoy when she reached a new milestone. The moment I would like everyone to know about, the moment I cried uncontrollably was on mothers day when she was 3. Charlotte walked to me, no walker, no holding hands and unaided. She took 4 steps. This is something they said she would never do. This was my stubborn little Char Char. Charlotte then started to prove everyone wrong, 4 steps become 5 etc until she could walk up to 15 steps by herself. All the time saying to me “mum when I’m bigger I’m going to run like Grace” To my reply “Honey who knows, all you have to do is keep practicing”. How do you tell a 4 year old that she will never experience running like her sister. How do you tell your little girl that she will lose the ability to walk, to cough, to swallow, to breathe and maybe even her smile?
Well we take one day at a time, Charlotte can no longer walk as far by herself, but she is still walking in her frame, only if it is inside, its walking. And yes Charlotte is running, she is running in her purple wheelchair. Charlottes left side is becoming weaker, but hey her right side is still going. Charlotte can now dog paddle by herself, It has only taken 6 years to put her head under the water, but she is doing it How long Charlotte will be able to do these things herself is a question I cannot answer. I know that the day will come and she can no longer achieve her goals. That’s when her father will modify something so she can.
Some memories that I have now and will always hold in my heart are the following. The first time she realised she couldn’t drive a wheelchair down steps, even though we told her she had to learn the hard way especially on Christmas eve. The first time she got stuck in the hail after a hailstorm because she insisted on doing circle walk. The time where she threw a tantrum because she didn’t want to have a photo shoot with Ricki-Lee, she wanted to play with the Kelly boys instead. And most of all is the time I told her and her sisters what SMA was. This was one of my most dreaded moments, however she unfolded what I told her and just said “is that why I’m so slow at walking.
I haven’t told you all about the bad times, the tears of sadness and the thinking “is this the start of the end”. I rather talk about the good that the disease had brought our family. We now do not take our children for granted, our life is always busy. We are doing everything now not tomorrow, for tomorrow may not be a good day. I would like to show you all a quick slideshow of our Char Char and the joy that she is spreading over our life.
Please look, remember these photos, cause it is not always going to be this happy.