Justin and I have been on a journey since we began having children. We used to talk about how many kids we wanted, did we want boys, girls, or a combo… We never discussed having special needs, but did make passing comments once in a while that we would be perfect candidates for the job because of our faith, family, and network of support…. Little did we know…
We had wanted a boy first and then a girl-and we got it. God was tracking with us ( ). Three years apart was great-good job, God. In my mind, our family was complete. My white picket fence. But, as our white picket fence was bulldozed over by God allowing our children to have Sanfilippo, we also started questioning every “plan” for our future we had made, along with a host of other questions. Key word: WE. Sure, we had prayed that God would bless our plans in the past, but I am embarrassed to say I never prayed, “your will, not mine, Lord.” At least not with complete faith and trust in it.
You know that song, “where you go, I’ll go, where you stay, I’ll stay, when you move, I’ll move…..I will follow…”
I don’t like it.
I mean, not many people, if we are being honest, do. I hate dying to my plans and my wants. And I have learned that even seemingly good plans, or “my heart’s desire” plans are always not blessed by God.
When Justin started talking about adding to our family weeks after the diagnosis two years ago, I thought he had lost his mind. Did he forget we said 2?! Sanfilippo or not, 2?! Did you hear the Doctors?! The challenges of managing 2?! But, I went with it, trying to see how we could take matters into our own hands and get us a non-Sanfilippo baby. But, at least now I was adding, “your will, not mine, Lord” to our plans. In fact, over a year and a half went by….and God was silent. In fact, we both got to a place where we were and are praying, , “where you go, I’ll go, where you stay, I’ll stay, when you move, I’ll move…..I will follow…” and hanging on for dear life. And, for the first time, meant it.
We explored sperm donation…getting lists of donors and contacting agencies, even picking out potential Australian donors that were at least 6.3 and could play basketball. We met with a fertility clinic with a Dr. that had memorized a script that he rattled off saying if I took this or that drug…we could get pregnant, even lying saying we could test my eggs before adding sperm to ensure us we would have no child with Sanfilippo. As I stared at the talking head, I couldn’t help but stare at the numerous football memorabilia stacked on his shelves that poor families wanting a baby, purchased for him.
IVF wasn’t an option because for us, we couldn’t imagine discarding children with Sanfilippo, and implanting only “healthy” embryos. It just wasn’t an option we were ethically comfortable with.
As our journey continued, I explored adoption and found out that we would be eligible like any other family, but would probably not be selected…after classes, days of paperwork, home visits, etc. unless the child had special needs or was an international special needs adoption where the government would choose us because they would see our experience as a positive.
So, starting in October, I started looking at profiles. I was drawn to Asian children with minor special needs….I also looked at domestic, older children, but given our children couldn’t tell us if something bad happened, we couldn’t take that risk.
As we started talking about adopting special needs, we got to a place where we began to imagine what it would look like to just stop trying to “manufacture” a child. What if we just went for it…..naturally? What were we running from? If we trust God, and he is in charge, no matter what we do we will have a special needs child if we are supposed to. And-what is so terrible about that anyway? We have a 75% chance of having a child without Sanfilippo…and we are completely comfortable with Sanfilippo. We know it, we love Jayden and Brooklyn, and we would love a third child just the same.
I remember on New Year’s, Jan 2011, God just asking me to be open to a 3rd child, but never in all my searching did he confirm a way to go. For two years, we sat and waited. Doesn’t seem that long looking back. Every option we looked into wasn’t wrong….just never went anywhere……
So-in September, Justin and I started half-joking, now that we are building a house, we should go for it…naturally. And, 24 hours later, we were pregnant.
As I write, I am 13 weeks pregnant with our 3rd child. It may have Sanfilippo. In fact, to me, it does until someone says it doesn’t. And we are REALLY ok with it. We obviously don’t want any of our children to suffer or die…but we took a leap of faith, and are trusting that God is totally in control of this little life. What I don’t mean is that we secretly want it to be “non-Sanfilippo”. To us, that means that Jayden or Brooklyn’s life is less valuable or they are less wanted because of the way God made them. We disagree. Sanfilippo just makes them different, but they are just as easy to love, to mother, to fight for……
We are thrilled to welcome this little one….God willing! And, we will love whatever He wants us to love. I am human-and when I begin to worry about how we will manage, I remember to simply pray, “your will, God, not mine-let your desires be my desires.” I am due June 3, and we have decided to not risk a miscarriage and wait to test the baby for Sanfilippo until it is here. We are even thinking to wait to find out the sex! I know, now we are getting crazy!!
6 weeks
11 weeks
