I saw this post from another mom who lost her young daughter to Tay-Sachs disease, a disease in the same family as Gaucher’s Disease. I share it because she puts into words exactly how I feel…
Is it worse to hear the words, “your daughter has Tay-Sachs disease” or “I’m afraid your daughter is not going to make it?”
Is it worse to hear that her life expectancy is 1 to 4 years, or that she has only minutes or hours to live?
Is it worse to see the doctor excuse himself from the room just after telling you her diagnosis because he can’t contain his tears, or to have doctors who have treated your child for years pay their respects teary-eyed?
Is it worse to have all of your hopes and dreams for your child instantly crushed or for you to know that you will never again get to hold her or take her for another stroller ride?
Is it worse to look at her smiling face, knowing that one day soon her contagious giggle, among so many other things, will be stolen from her, or to look at her gorgeous face for the very last time?
Is it worse to feel your daughter sink into your arms because she doesn’t have the physical strength or muscle tone to hold her body up, or to feel her lifeless body sink into your arms minutes afer she takes her last breath?
Is it worse to be bombarded by words like seizures, blindness, pulmonologist, feeding tube, and test studies; or words like funeral, cemetary, death certificate, and morgue?
Is your silent, speechless drive home after your child’s diagnosis worse than the silent drive home from the hospital after she died – not even hearing her noisy breathing?
Is it worse to have to muster up the energy to play with your 3 year old son and pretend that everything is fine when you return from your diagnosis appointment, or to have to tell your 9 and 3 year old sons that their sister died –to watch one literally crumble heartbroken in front of you and the other run away with his hands over his ears?
Is it worse to have to make phone calls to tell your family and friends that your daughter has a fatal disease or to tell them that your daughter died that morning?
Is it worse to walk around heartbroken in a surreal daze with red swollen eyes, trying to care for your children, or to walk around heartbroken in the same surreal daze with one less child to care for?
Is the fearful anticipation of how you will survive the next few years of continual medical treatments and interventions, symptom management, and watching your child lose almost all of their abilities worse than figuring out how you will survive the next days, months and years without ever seeing, touching, kissing, holding or caring for your child again?
The truth is, neither day is ‘worse’ or ‘easier.’ They are both completely devastating and utterly heartbreaking in their own way. They are both days that I wish I could just erase from the calendar and permanently remove from my mind.
Like Emma’s mom, I try to focus on the time in between the time of her diagnosis (5 months old) to the mom she passed away (3 years 4 months 10 days). The times we cuddled, the times she stared into my eyes and melted my heart with her amazing smile, the times she held my fingers.
I try to focus on all the little triumphs - that time in hydrotherapy when she actually kicked her legs for the first time and loving the feel, look, and sound of the splash when she did it. Or that time at home when she was able to knock down all the doors on her toy after trying for many, many months. Or the time she finally put a block into a box! Just thinking about those moments make me smile so big.
But it is still so hard. So damn hard. It has been almost 14 months since she has been gone. Yet in many ways, it still feels as raw as the day she passed away.
Hannah, my little miss Hannah, I miss you so much.