Ever really don’t want to write? But feel like you need to? So it’s exhausted, disjointed and painful, and feels like an insanely long dental cleaning? Well, this is one of those times. Don’t necessarily want to say what I gotta say, but feel like it needs to be said. And anyone that knows me will tell you, if I think it needs to be said, I’monnasayit.
Awhile back, my post about our sweet Vivi and the HepB translation error* furrowed some brows in the HepB community. There was talk about me and my family. Talk of how “disappointing” I was, as a special needs advocate, for being so closed-minded.
It really really hurt.
For the record, I am not opposed to adopting a child with HepB, it has been one of the needs my husband and I have been open to since we researched it extensively a few years ago. But there are needs we are not open to. Just how it is. And I won’t apologize to anyone for it. If you are pursuing a special needs adoption, you should do your research. You should have a clear, well thought out list of needs you are open to, those you would consider, and those you are not comfortable with. And if one of the needs I am open to happens to be a need you are not open to, that’s okay. You got your business. And I got my business. If we’re both bringing home an orphan with special needs, big or small, it’s all good.
We have come to each of our children in a very different way. When we filled out our application for the WC program with our first agency in 2004, our initial checklist was very limited. Looking back, it was clear how frightened we were to be considering a special needs child. But we were honest with our selves and with each other in regards to what we felt we could handle… physically, mentally and emotionally. And instead of being excited for us that we had opened our hearts to a child with special needs, our agency replied with this: “Your checklist is so limited, maybe you should just stay in the NSN program.”
I’m not gonna lie, it hurt. Somehow I suddenly felt selfish and self-centered. Like I was “unworthy” of parenting a special needs child. After recovering from the shock, I went to my husband and pleaded with him to either open up the needs we had checked as “yes” or increase the age range we had requested. He refused. And I resigned myself to the reality that maybe we just weren’t intended to be special need parents. Maybe that WC coordinator had been right, and my heart had been wrong.
Three months later we got ‘the call’ for Isabelle, a 7 1/2 month old with a minor heart defect and, well, you know the rest of that story. Point is, we didn’t crater to pressure (my self-imposed pressure included) to broaden our limits of what we felt we could handle. And we still found our girl. I was so grateful to my husband for standing firm during that time of uncertainty. It was the right decision for us at the time.
We have since learned so much, about various special needs, and about our own ability to parent through special needs, foreseen and unforeseen. And we have been surprised by how much our hearts have grown, just by witnessing, parenting and loving our ‘special needs’ kids. But, even now, we do have our own set of limits. And we definitely have special needs that we have decided we are not comfortable with. Needs that are either out of our comfort zone or out of our ability. And I’m okay with that. I think every family should decide for themselves what they feel they can and can’t handle, based on gathering all the information they can, contacting or reading stories of families who have parented a particular special need, and talking with their doctors. And then praying about it. A lot.
Other times, we found our child and realized that no matter the need, the child was ours. God had ordained it in our hearts and minds and we, through our faith in Him, knew we would be competent to care for this new child, regardless of our personal opinions (or the opinions of others). Such is the case with our newest daughter. We have plenty of experience with clubfoot, for us it’s pretty much a non-issue. Her arm deformity, our current diagnosis is Madelung’s Deformity, is something new, but we feel like this is completely manageable as well. Possible surgery down the road if and when she might have pain from the deformity, but really not a big deal.
Additionally, there is a chance our Vivi has a form of dwarfism. There are over 200 types of dwarfism and numerous subtypes… all with a wide array of symptoms. But the bottom line is that we don’t know for certain if our girl is affected. And won’t until we have some good xrays, which probably won’t happen until we have her home. So we’ll wait and see, knowing that the only one that needs to know, her Creator, already knows. And that He has and will continue to prepare us for whatever lies ahead.
Now, don’t get me wrong. Being prepared doesn’t mean being 100% comfortable. Some days I have no fears, only surety in all the red threads that God has wrapped around our girl. Other days I am scared. Not terrified, but painfully aware of the significance of the ‘unknowns’. Of how our lives might change once Vivi comes home. But over that changing forecast of cloudy or blue skies, is the sun, magnificently shining on us since we decided to step out in faith for our Vivienne. And it is on that that I rest.
Did I check “dwarfism” off on our checklist for WACAP? No.
Am I awfully glad we requested to get her file anyway? Yes.
**I wrote this post months ago, shortly after we shared about Vivienne joining our family. I didn’t post it at the time, it was too emotional. But after re-reading it 6 months later, I thought it was time