When I went to bed last night, I couldn’t sleep. I lay in bed and thought of the things that lie ahead of us, and the things that I have already lost. There are so many little graces of being a mother, so many special moments with your newborn. I was so looking forward to quiet moments in the rocking chair, nursing, with my sleeping, warm newborn curled against me, downy fuzz of his head all soft and warm. Those sweet suckling noises, the rooting feeling when they are looking for the nipple.
I was thinking ahead to when we would be a little family unit – him sleeping quietly in the Rock-n-Play used by both of his sisters before him, his sisters playing nearby.
I envisioned Evaline helping change his diapers.
I remember clearly how physically hard the first 1-2 weeks after Hazel’s birth were for me – all of the slings and arrows of post-partum – the bleeding, the pains, the constipation, hemorrhoids, engorgement and leaking, random crying jags from all the hormones, and nursing pain. But I had a baby to make up for it. I was home with my baby, enjoying those first baby snuggles, sleeping curled around her tiny form at night. This time, our baby may not ever come home.
This time, we will likely have to make immediate decisions about our son’s life as soon as he is born or perhaps before he is born – induction? C-section? Further, because of the moral and ethical issues surrounding resuscitation of infants with T18, I may have to literally fight to convince people that his life has meaning and is worth saving. Or he may be born so sick that we know in our hearts that intervention is not the right thing for him. In that fragile emotional time just after a baby is born, I will be deciding things that no one should have to decide for their child.
I was in the shoe store trying to find Evaline satisfactory shoes the other day, and I kept seeing all of the little bitty baby shoes for 1 year olds. All of the slippers and moccasins lined up. I remember how hard it was to find shoes for Hazel at 1 year of age. And I realized that my son may never need shoes. He likely won’t need shoes. I don’t want to sound like I’ve given up on him, because we haven’t. Yet, we are trying to find balance. We are trying to be realistic while still holding to hope.
We will likely miss that special bonding time right after our son is born. Instead of skin-to-skin with mommy and daddy and nursing and quiet adoration, there will likely be CPR, other resuscitation, hope suspended as we wait to see whether our son will live or die.
So many little things lost. So many things that I was looking forward to doing and seeing and feeling. Instead, there will be anxiety and grief and decisions and tears.
This was not supposed to happen.