It is hard to believe it was only a year ago that our lives were turned upside down. I was stuck on my couch depressed and mourning my son. The crazy part was my son was still alive. It was the life I wanted him to have that I was mourning, the life that I thought was going to be taken away from him.
I am not sure how long exactly I stayed on that couch for but thanks to my family, friends, and our new found MPS families I did get up.
The past year has been a roller coaster for sure. Weekly trips to Toronto to go to doctor appointment after doctor appointment and have all sorts of tests run to determine how far the disease has progressed. Surgery’s, MRI’s, ERT’s (Enzyme Replacement Therapy). It was chaotic and heartbreaking. Having to hold your crying child as they are being poked and prodded is one of the worst feelings ever.
Jack has been a rock star through it all and seems to take it in stride. His patience and resilience continues to surprise and inspire me.
He seems healthier now than he has ever been since being on Elaprase, the synthetic enzyme. We have been getting his infusions at the Peterborough Regional Healthcare Centre every Friday since December. Some day’s he fights getting his port accessed and other days he sits there with little fear and watches the needle go in.
We are still enrolled in the Natural History Study at the University of North Carolina where Jack goes for cognitive testing every 3 months. He is doing remarkable and his IQ continues to be average or above. We still have high hopes that MPS will not take its hold on Jack’s brain. We continue to see him develop. He is learning how to read and showers every night pretty much by himself (shampooing his hair and all).
Although we know MPS has presented itself throughout his body, physically Jack is to be doing well. We continue to go to Sick Kids to visit our rounds of Cardiologists, Ophthalmologists, and Otolaryngologists. Hearing a doctor tell you that there has been ‘No Change’ are some the best words the parent of a child with MPS II can hear. Our last big trip was in June when Jack had his tonsils and adenoids removed, ear tubes inserted and a bronchoscopy completed. It was a very rough recovery but the results were very successful. His hearing has improved, he seems less congested and he no longer rattles the house with his snoring.
So as life continues on and we continue on this journey, I try to explain to people that it is not that life has gotten easier, it is that we have lived in this new life for so long now that it has become our new normal.
I remember talking to another MPS mom shortly after diagnosis and telling her I don’t know how we are going to ever be happy again. She told me that right now it seems that way but "life will be beautiful again". And she was right, life is beautiful. More beautiful now that is has ever been. I no longer mourn the life I wanted Jack to have because he is living life right now. And for each and every one of us there is no guarantee of tomorrow, only right now. Life is full of so many uncertainties. So give your loved ones a hug, stop worrying about the little things and get out there and live!
A few pictures of our summer vacation at a cottage in Cloyne.
|Such a handsome boy|
|Jack towing brother Owen and cousin Rory|