We Cry and We Celebrate

We cry and we celebrate and we cry again and celebrate again. Is this the life of parenthood in general or just those of us who walk the path with our kiddos with special needs? It feels extra hard some days. I wish our life didn’t feel so crazy, and I wish it didn’t feel unfair. For my kids and selfishly for me. Most days now I can laugh about the statistics and how often I’ve heard the phrase “this is so rare.” But today is one of those days when the same thoughts feel like they are going to break me. I’ve questioned my faith but also have days where it feel so crazy that it MUST be a divine providence. I’ve questioned my own sanity but also have days where I can reason through the logistics of everything we’ve been thrown.

And this weekend, we celebrated. We CELEBRATED Regan’s third copy of her twenty-first chromosome because it introduced us to a world of beauty that I otherwise wouldn’t have known. The celebrations don’t detract from the exhaustion of life with special needs, but those days carry us through any burdens we have. There are sacrifices in all aspects of parenthood, after all. It’s just so much more acute with a child with special needs. But the celebrations are also so much sweeter. And the memories of the burdens fade so very quickly. A memory popped up on my Facebook the other day – one of those that reminds you what you did two years ago today. It was of Regan, at 2 years and three months, JUST beginning to stand on her own. I started calculating the timeline backwards in my head, remember when she REALLY started walking consistently. Y’all, she wasn’t full-time walking until she was 2 years and 9 months. How do I not remember that? In the same “memory” on Facebook, she also wasn’t talking. She was communicating exclusively via sign language. Today she is speaking in short sentences and starting to answer abstract questions like “What did you do yesterday?”

Did you know that some cognitive psychologists theorize our physical body is incapable of truly remembering pain? Rather, we remember emotions associated with pain. I assume my brain is performing a similar function here – I don’t remember the struggle, the exhaustion I had while Regan was learning to walk, unless I sit back and remember the emotions I have that associate with those memories. Instead, my brain is focused on the present – what we can celebrate that she has accomplished versus reflecting on the struggles of the past.

I am having a harder time coping with our new baby’s diagnosis when I compare to how I handled Regan’s diagnosis. At least that’s how it feels right now. But maybe my memories are skewed by the celebrations of the present. Right now my heart is longing for that normalcy where we can celebrate what IS and not cry about what ISN’T.

One thing I’ve allowed myself over the past few months is to let the tears flow when they come, and not be in a rush to “get over it.” The pain is there, and I’m allowing myself the validation that these emotions are raw for me.

So let’s talk about how baby 3 IS! We had a consultation with CHOP (Children’s Hospital of Philadelphia) last week and in general terms – baby is looking great. They did discover a small VSD (ventricular septal defect). It’s a small hole in the heart between the lower two chambers; the doctors are very hopeful this will close on its own in utero. No other structural abnormalities were found, which is wonderful news. If you thought our case couldn’t get any rarer, you’d be wrong. I also have a marginal cord insertion that could lead to hospital bed rest and other pregnancy complications (something called vasa previa.) SO if you have an extra prayer, some extra good vibes, energies and thoughts in your heart – we are very much praying this issue resolves on its own. This condition is also rare (ha!), and we’d love to fall into the very normal category, for once.

For now, we will embrace the painful days and enjoy the celebrations along the way, too.