I can remember sitting alone in the rocking chair in Mark’s room in the dark as I spoke to a friend about Mark’s diagnosis and what it meant for our family. The final thing I lamented over was not having any more children due to the magnitude of Mark’s care. She didn’t say anything directly to address that statement but just echoed that she understood my grieving. I took her silence as confirmation that adding to our family was probably ill-advised.
Time went on and the sting of the initial diagnosis wore off but my desire to grow our family didn’t. The timing, however, never seemed right. There were too many hurdles. Insurance problems. Medical testing. Rigorous therapy schedules. Childcare. Figuring out how to get our current two children in opposite directions while working full time was our biggest mountain.
Even still, I began to get more serious about entertaining the idea of a third child. The reality of it scared yet excited me at the same time. I watched families with multiple children and especially those with special needs. A family who Ike grew up with have a child with a severe disability and then went on to have three more children. Their kids are older now and fight over who will take care of their oldest brother when their parents pass away. That was it. I wanted that. I wanted another sibling for Jillian and for Mark. To be an example for him, to learn alongside him and ahead of him, and to help Jillian care for him when we couldn’t. That thought makes me suck in a deep breath as my eyes fill with tears, but I know it’s all part of our reality.
And selfishly, I felt robbed of those beautiful milestones with Mark. The firsts. Walking, talking, all the things babies do in the first, second and third years. The ability to enjoy a toddler without worry over their development. And yet I know what I know now. Everything isn’t always fine, bad news is a real possibility and not every baby is born healthy. Yet I wanted another chance to savor those moments. A do-over. And I felt sheepish for wanting that and for wanting another. Irresponsible, reckless, and careless; all things I’ve never been. Yet despite those feelings, the desire for another baby didn’t go away. I would often say, “it doesn’t make any sense, our life is nuts and I want to add an infant?” But I did. And eventually, Ike did too. He was certainly less enthusiastic but he was open to the possibility.
And so after my surgery in May we began trying. And after several months I was fully convinced that it wasn’t going to happen. We were fortunate enough to get pregnant on the first try with Jillian and Mark, so this was not normal for us. I was older now, and perhaps that phase of my life was over. So we decided to give it a rest. I dealt with bronchitis and just felt defeated, in more ways than one. Then one morning I felt weird. I knew this weird. I grabbed a test and it lit up right away. My heart began beating and terror set in. What had we done? We had things sort of under control. A routine, a rhythm, something that helped us make sense of our world. And now it was all about to change.
And I was terrified to tell anyone. Would this pregnancy announcement be met with “oh no!” “I’m so sorry!” And “oh wow, did you mean for that to happen?” Immediately I doubted my abilities as a mom, a person and as a decision maker. And in the throws of nausea, fatigue and extreme sensitivity to smell I really thought, “what have I done?” One night, I could barely get myself off the couch and Mark grabbed my hand and thrust his little dump truck at me. He was clearly frustrated but I couldn’t figure out why. The frustration lead to crying and a tantrum. I was miserable, overwhelmed and frightened by the realization that I will be adding an infant to this insanity. But never the less, God is slowly bringing about peace, especially as nausea lifts, and reminding me that I’m not alone and He created this little person in me, who has a purpose that’s greater than me or anything I could even fathom.
And as for this little person. For the first time in all of my pregnancies, I am aware of the magnitude of what it means to bring a child into this world. I have no expectations or plans. I have to be open to whatever is in store, good or bad. Will they have a terminal illness? Begin seizing at birth? Not make it past their 2nd birthday? All harsh realities to which we’ve been introduced. There’s a one percent chance of having another child with SCN2a and we pray that this time, unlike the last, the odds will be in our favor.
I have no illusions that this will be easy, our attention will be divided and more will be added to our plate. I have never felt more anxious. What if this is a repeat of the last? Will we be strong enough to care for two special needs children? I have a couple of dear friends who are pregnant while I am, and I wonder, will I cry after their babies birthday parties like I have before because their babies were doing what they were supposed to and mine wasn’t?
I often hear this common reply at baby showers when asked about whether an expectant mom wants a boy or a girl, “I don’t care, as long as the baby’s healthy”. Those words have never been heavier on my heart. So I pray that this little one will be healthy and free from the ravages of a rare genetic disease. And if they’re not healthy, I pray that God will grow us, stretch us and mold us to love this one just the way He moved and strengthened us to love Jillian and Mark the way we do.