What it's like to live with a progressive neuromuscular disease

Wednesday, March 14, 2012

Dreams Can Come True

Tomorrow my baby boy will turn one.
Not only will I celebrate his first year of life tomorrow, but I will also celebrate the first anniversary of a dream come true for me. I will be reminded tomorrow, and probably every birthday of his thereafter, of all that is good in the world. I will be reminded of the fact that if I want something badly enough, and I’m willing to be flexible in how I go about getting it, I can and will find a way to make it happen. His birthday will always be proof that if I listen to my heart, if I trust my inner voice, if I believe in myself and not let others sway me, I won’t go wrong.
I wish I had more time and energy in this moment to really share the journey I traveled along to get here. And hopefully one day I will…To share what it was like choosing to get pregnant with my first son, almost six years ago, months after being diagnosed with HIBM and being told pregnancy would likely accelerate the progression of the disease. What it was like to experience the joy of breastfeeding him exclusively until discovering, when he was 10 months old, that human milk is one of the richest sources of sialic acid (the enzyme that is deficient in my disease) and that nursing him likely leached large amounts of sialic acid form my body and then confronting all of the feelings that came with that ugly realization. What it was like to have all of my friends get pregnant with their second, while I grappled with trying to figure out how much worse I’d be willing to get if I carried another baby, especially after hearing about women with  HIBM who become wheelchair-bound after pregnancy. What it was like to watch my sister, whom I love so dearly, become pregnant with her third child. What it was like to visit her in the hospital the day she gave birth,  me in tears, sobbing in the waiting area, crying in the bathroom, having to leave and go to the lobby, not even being able to bring myself to hold my beautiful newborn niece and hating myself for mourning my loss rather than being able to share in her joy. What it was like to accept the fact that carrying a second baby would be too risky and how desperately I tried to make peace with having only one child. Realizing I didn’t want to mourn yet another loss from HIBM and that I did indeed need to find a way to have another baby. Deciding to move forward with surrogacy. Going through the physically, emotionally and financially taxing process of three different surrogates and two  infertility cycles over the span of two years…And then,  finally, standing in that delivery room on the afternoon of March 14th, one year ago, gripping the hands of my husband so tightly, feeling completely overwhelmed by so many emotions at once, watching this new life emerge into the world with the help of a woman who will always hold a place in our hearts and our family, and basking in the joy of knowing that no matter how much HIBM takes from me, no matter how much loss I endure at its hands, no matter how disabled my physical self may become, I didn’t let it take from me what matters most in my life.
I look at my family now and I feel complete. I look at my older son and feel my heart at ease knowing that he will now have a partner whose hand he can hold when life with me, a mother with a progressively debilitating disease, feels scary and overwhelming. He will no longer have to be alone in this. He will not carry this burden by himself. I look at my husband and see him experience the joy that he never imagined he would feel sharing life with two kids. I look at my nieces and watch the fun they have in playing with their new baby cousin. I look at the grandparents and see their delight in having another little person in their lives and most of all, I look at me. I look at this beautiful little soul, my own personal miracle, whom I get to love and cherish and watch evolve. And I know, in my heart, that it was and likely will always be my greatest accomplishment in life. There isn’t much more I need right now, in this moment.

Sure, it would be nice, to not have this disease. But right now, I wouldn’t trade this life that I have for anything…

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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