We are deeply moved and proud to announce that today is Shira’s 4th birthday! The last 4 years have been years that we would never wish upon anyone yet we are thankful, grateful and feel truly blessed by our daughter Shira. Shira is beautiful, happy, and smart but more than that Shira is a human being like all of us reading this not just a sick kid.
The biggest worry most parents celebrating their 4 year olds birthday is the stress of who to invite, how large it should be and should we have goody bags. With us each year a birthday comes along and we don’t know if it’s the last; we celebrate but we always wonder if this is the last. We try not to think these thoughts but we are surrounded by statistics, mortality rates, and watching friends loose their children to this horrible disease.
Laughter, joy, love, adventure and frustrations make up Shira’s day like anyone else. We sit here in bewilderment, awe, and unconditional love for one another. Most days we don’t see Shira’s disability. Shira’s soul and personality shine brighter than the harsh reality of Spinal Muscular Atrophy and its mortality rates.
There is much heartbreak in raising a child or caring for a person with Life Threatening Illness. Boundaries and walls are everywhere as you make your way through each day. I have never met so many people, great people as those caring for children or adults with disabilities. These caregivers meet these boundaries and walls with the clenched fist of advocacy time and time again. Life! I really never understood what a life was until we were told Shira has Spinal Muscular Atrophy Type 1, a terminal genetic disorder and that she was very weak and probably wouldn’t live to be 1.
Our story is like many stories about doctors misdiagnosing Shira saying there was nothing wrong with her, then being given no choices of care or therapies which may prolong Shira’s life or at least insure she experienced the highest quality of life, being told “There was nothing we could do so just take her home and love her until she dies.” It was a total, full blown out and out brawl of wills to get the doctors here on track to do what we wanted for Shira. Finally the doctors relinquished and got on board to help us deliver the NIV Protocol of Dr. Bach of The University of Medicine and Dentistry of New Jersey. These therapies would not cure Shira but they would help to prevent an untimely death!
We have met a lot of amazing, caring, compassionate people along the way. Our sister in law Abbey had found out about Dr. Bach in New Jersey and we felt we had to go see him. Maxine called Alaska air and while talking to the ticket agent she mentioned we had to go to NJ as our daughter was very sick. The ticket agent asked if our daughter had SMA Type 1 and this was before we had the official diagnosis back. Well we were taken aback that he would just blurt out the disease our daughter has. It turns out we were speaking to Mr. Mortenson the grandfather of a child living in Denmark! Mr. Mortenson connected his son and us and it was from this man I learned about what we were dealing with and the severity of the illness and the timely manner in which we needed to get Shira on ventilation and a g-tube before she got ill.
Our fight began at this point. I was scared to death because no doctors were listening and no one wanted to pursue the course of treatment we found out about. Maxine being the brave one in the family did not listen to the naysayers and promptly called the media. While we fought with the medical system to deliver the treatment and care we had researched Lora Stants who had lost 2 children to SMA and started SmaSupport Inc. sent us all the NIV equipment right to our door. Angela Trick a mother who had lost her son to SMA about six months earlier than Shira’s diagnosis sent us her son Jacob’s Cough Assist Machine. The doctors here were still not convinced to use this equipment as they were caught up in medical hubris. After being in the hospital for well over 30 days I took the machine in, plugged it in, watched the video on its use and started practicing on myself. It was at this point the doctors jumped in, decided to understand the machine and how it is used and we proceeded to use it on Shira. Shira’s lungs started to heal quicker and coupled with non invasive ventilation she was healing fast. All the way along it has been a comedy of errors, lack of information, and terrible relationships with the medical profession. Everything starts as no and you have to advocate (fight) hard to get what you need for your child. I have never been involved with so many educated people giving advice on a subject they no very little about. How can people advise you on daily care when they have never cared for a child with this type of disability? It happens all the time and unfortunately the children then die untimely deaths.
Doctor Bach is my hero and I bow to him for standing up against the emdeity of a medical systems conventional wisdom on the subject of Neuromuscular Diseases and their treatment and care of them. I have learned that as much as there is science involved in medicine there is also a lot of personal feeling which go into diagnosis, prognosis as well as modes of treatment and care and these can be skewed by everything from: sickness, mental illness, addiction, relationship problems, discrimination and on and on just like the regular population.
I have had people to tell me to stop complaining because here we are now and Shira is 4. The reality is we see the same terrible advice and medical treatments being given to patients today as we did for us and to families before us. Advocacy never stops and we will never stop advocating for Shira or anyone else that needs help! We were told not to go on chat groups because the parents on them were obsessed with their children’s care! Huh! We were told not to have false hope! Hope is never false!!! We have been told that we chose to care for such a child and we got what we asked for!
The list goes on and on and it never surprises us as to what we are told as to the reasons this happened to Shira or to people’s reactions to Shira. There have been angels come to us from where we least expected and angels disappear from us from where we least expected.
We want to thank everyone who has supported us while we go about our daily life keeping Sammy’s life as regular as possible and Shira happy. Without our family and friends emotional support, our friends on Sma Support Inc. chat group support, Dr. Bach, Dr. Schroth, Dr. Swoboda, Dr. Beck, Dr. Barclay, our OT Susan Gmitrosky and PT Joan Glover, Andrea Hofmeyer, Cheryl Dawson, Jane Henderson, Marie and Kenny, Bubby Ruth and Bubby Harriet, Amy and Rafi Gelbart, Chai Lifeline, SmaSupport Inc. and Laura Stants, Help Fill A Dream, President’s Choice Children’s Charity, Vancouver Foundation, Muscular Dystrophy Association of Canada, Shira’s life would be very different. But mostly thanks has to go to Maxine Shira’s mom who makes every day possible for me to care for Shira while making sure Sammy is leading a healthy inclusive life and is not neglected in any way. It really does take a village to raise a child!!!
Happy birthday Shira “Little Miss Boops, Sweet Pea” we love you and are proud of you. You have shown us how precious life is and how to live it with dignity!
Love Mom, Dad and Sammy