There is an elephant standing smack dab in the middle of my brain.
Until now, I just haven’t felt ready to really talk about it… despite the fact that it occupies the majority of my brainpower lately. And, other than when I am safely nestled in my husband’s arms and free to bawl my eyes out, I haven’t.
I still don’t really want to talk about it, but I guess I’m ready to at least try. I feel like I’ve got to try. Because until I do, it just doesn’t feel right to talk about anything else.
I just can’t seem to get around the elephant that is occupying way too much space in my gray matter. So I’m hoping that by sharing my thoughts here, I can move on, feeling like I have at least made an attempt to address this large, looming reality.
Vivienne has dwarfism.
When I read that, when I think about that, my heart is in my throat. My stomach is in knots. And honestly, I’m not exactly sure why. Dwarfism isn’t the end of the world. In fact, I’m quite certain that there are many, many people who are living very happy lives, who happen to have dwarfism.
But my Vivienne isn’t just any one.
She’s my baby. And I love her desperately.
I’ve tried to decipher exactly why I feel so plagued with this undeniable, unshakeable sadness since her diagnosis. After all, we did understand when we accepted her referral that there was a chance that Vivienne had dwarfism. And we determined that if this was the case, we were okay with it. Because, as much as any biological child would be, she was already our daughter.
In fact, my husband decided then and there, before we ever even sent our LOI to China, that having a daughter with dwarfism was just fine with him. And he hasn’t flinched since. How I envy his acceptance. His steadfastness.
Once I met Vivienne in China, it appeared (to my admittedly untrained eye) that she indeed was a dwarf. And I grieved, to an extent, for her. For me.
And I thought I’d finally come to a point of acceptance.
Once home though, we visited doctors, orthopedic surgeons, physical therapists, occupational therapists, orthotists… all who doubted that Vivienne had dwarfism. And looking back, I can see that a small hope sprouted from those visits. A hope that beyond her arm deformity, our daughter would be ‘normal’.
But Vivienne is not normal. In fact, her geneticist at Boston Children’s admitted to having never seen another child with a condition like Vivienne’s. And she further shared that it might be a while before we do know exactly what form of dwarfism Vivienne has. With over 400 forms of dwarfism identified, the reality is, we might never know.
Our next step is to send Vivienne’s x-rays to the Skeletal Dysplasia Registry in Los Angeles. The registry serves as an opportunity for others in the medical community to review her x-rays. And hopefully, shed some light on our girl’s condition. Not so much for the present, because we know that Vivienne is doing wonderfully. She is growing. She is bright. She is positively magnificent.
But we need to know for her future. Will she need surgeries to straighten her spine? Lengthen her arms? Will she be able to have children? Because with each form of dwarfism, there are different outcomes. The spectrum is wide and deep.
And as the mother of a child somewhere on this spectrum, I find myself desperately groping for answers where there are none.
But I’m doing my best to just rest. In Him. And in the beautiful realization of just how deep and wide our love for Vivienne truly is.
His plan is perfect. This I know.
Romans 8:28: And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.