Lately, I have been feeling driven. After walking around feeling lost and unable to find meaning in this mess of loss and grief for much of the past 34 months, I feel as though perhaps I've found my purpose. It's not something I take lightly, and not something I am quite strong enough to submerge myself into at the moment. I need to do more research. I need to let all the information I have consumed in the last few months sink in. I need to work through my own issues - the guilt, bitterness and anger that has been left in the wake of my daughter's possibly unnecessary death.
I always wondered why my experience as a mother who has lost a child stood out like a sore thumb. I always wondered why I could never find peace with the fact that she died. I always wondered while she was still in the hospital why I could never accept the offers of doctors to wthdraw the CPAP which helped her breathe. My mind was boggled - Why on earth would they want to do that? She would die! I asked the doctors "WHY?" I asked WHY Trisomy 18 was considered to be fatal, and I never got a straight answer. It didn't sit well with me then, and it still doesn't. I knew from the moment that we were trying to be talked out of providing Freja with any life-saving measures that it was against my better judgement. It was against my instincts as her mother. But I was too frightened and overwhelmed to stand upand tell them otherwise. When the time came and she couldn't fight any longer because she wasn't being helped, I never did experience her death in a peaceful way. When she took her last breath in my arms, it was not a beautiful, spiritual moment. It was horrific. And then to learn two years later that there ARE doctors in this country, and in many other countries who do believe that with the proper interventions, T18 children can live beautiful, meaningful lives. I think that is the biggest blow I could ever be dealt. Even worse than her diagnosis.
She was a sad statistic. Too little, too late. This to me, makes a sad situation even sadder.
Which brings me to why I am here in the first place writing about this new found goal. Trisomy advocacy. I'm feeling a burning urge to inform the world about this condition, and help redefine that aweful, misleading label, "incompatible with life." This needs to change. Parents need to be given proper information and options. Realistic information. Not just one-sided information. Statistics need to be changed. Yes, statistics for T18 survival don't look very good at the moment but that is because of one thing and one thing only - These kids are denied proper medical care to get well and survive. Times are changing, and like many conditions that were at one time considered to be fatal, I KNOW for a fact that in the future, our trisomy kids will be given a chance to live without it even being questioned. Of course I realize that our T18 kids will never be like chromosomally typical children, but I know that there are lots of families out there who would unconditionally love and accept ANY child into their family - Including those with challenges. Why should someone be denied a chance at life just because they are different? Is that just not plain WRONG and shocking to think about in this day and age?
That opportunity was taken away from me. I want to ensure that no other mother has to say goodbye to her very loved and wanted baby without being given the WHOLE picture.
All around, the outlook for a child with a trisomy diagnosis is changing. I have found much more positive information about T18 and support lately than I did even two years ago. I was shocked to look at the Trisomy 18 Foundation website recently and see how the information on it has drastically shifted. When I first signed up to that website two years ago, it was basically just a support system for families who have lost children. Now, I see so much more positive information, including a section for health care providers and how they can assist families medically. Why was this stuff not available just two years ago. It breaks my heart over and over to think that my girl was born right on the cusp of this changing perspective.
She almost made it.
SGM Visits The Alpha Sigma Phi Fraternity House
4 years ago
3 comments:
Wow - I can feel your sense of purpose in this post. I am so proud of you for taking the worst of the worst and finding a way to fight and advocate and make things better for future parents.
I am sorry, so very sorry, that Freja was as you say, born on the cusp of the changes. That last line - "she almost made it" is something we say all the time about Emma. We were so close to life and joy and it hurts to think how close sometimes.
I think this is a great purpose! Parents have the right and NEED to know that their children can get care and not just accept that they're not destined to live. I know it would anger me to find out that drs could have saved my baby but didn't tell me. I hate that this opportunity to help Freja was taken away from you.
"She almost made it." I have said that so many times about Gage. We were so close. His transplant was a success. We had beat a fatal illness! And then he got a stupid infection and died anyway. I am doing a lot of work with our organization that provides support for parents of children with Wolman's Disease. And through this, I have learned of a clinical trial for children like Gage. They have a cure now. A simple infusion that Gage would have received every month for the rest of his life. 2 years too late. But, as I have said before, we did the best we could for him with what we knew/had at the time. It took me two years to start truly believing it, to let some of the guilt go. But the "what if's" still sneak in. And they are hard to let go of. Thinking of you.
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