Posts by Belle
I feel like I have written this post so many times before, and I guess basically have but under different circumstances. Results from autoimmune workups. Results from infertility workups. Results from two-week wait blood draws. Same emotions, different set of circumstances.
The real difference this time is that we are talking about my child and the anguish is far worse. I’ve already reached the end of Google searches (and I am only one week into the two months we have to wait on results). I am a mess on the inside and having a hard time moving through the daily motions.
Sabine saw another specialist last week and some genetic tests were ordered. We had to sign a stack of paperwork for these tests and all three give blood. We have entered the realm of genetic syndromes where there are no treatments. There are no cures.
Part of me, the obsessive compulsive who likes to put everything into boxes and categorize life, desperately wants a label. I want to be able to tell the naysayers that THIS is why Sabine is the way she is and prove that it is in no way my fault.
The other part, though, is terrified of what this label could confirm. The syndromes we are testing her for are in the arena of “rare diseases” with very few people suffering from them. There are huge phenotypes to these syndromes meaning one child might have severe learning disabilities and physical limitations while the other have extremely mild expression. At the moment, if Sabine tests positive she will luckily be in the mild phenotype, but we still don’t know what her future holds. How will she do in school? What other medical complications will accompany this syndrome as she ages? Will she grow up and be able to have children of her own? These are extremes, yes, but they still keep me up at night.
Adding another complex layer is my fear that these tests will come up empty-handed. One of the syndrome tests only has a 60-70% accuracy rate, meaning even if the test is negative, she could still have it. So what then? Will she be labeled or not? How will we track her? Children with this syndrome have a much higher incidence of kidney cancer. How will we watch for this? Will we watch for this if she is not labeled?
Then there is my personal insecurity. How would I handle a diagnosis? Of course I will love her dearly and forever, and of course I will do everything in my power for her, but that does not mean it will be easy. Or that the journey might not be lonely. Or that the constant judgement people pass on parents will not be that much worse. Am I strong enough?
And finally, there is still the best case scenario that NOTHING is wrong with Sabine and that all this worrying will do nothing more than give me more wrinkles. There is the chance that she is just a small person, growing on her own wonky curve and sporting a few random physical markers and delays. My husband is doing an excellent job believing this is the case. He reminds me daily of the progress she is making (we have so many single words now, y’all!). He spent 10 minutes researching the potential syndromes we are testing for, determined she does not fit any of them and now sleeps soundly at night and does not worry. What I would not give to be just like that. But I’m not.
One week down. Six to seven weeks to go….
Spring is FINALLY here! I can feel my spirit lifting and happy-go-lucky southern self returning. For the past four weekends we have taken Sabine hiking. Two 6.5 mile hikes, one 9 mile hike up a mountain and one short and sweet 3 mile Mama Baby hike. Usually Sabine and I hike with Daddy and she rides happily on his back in a Kelty hiking pack. The other weekend, though, Daddy had to work and the weather was just too pretty to stay inside so I struck out with Sabine in tow. We drove to Mt. Kisco to go to Target (the Bronx Target is completely insane on weekends) and to check out the Arthur Butler Nature Preserve.
The Preserve was just lovely. Varied terrain, nice tidy trails that were impeccably marked and QR codes as you went to read more about the area (sadly I could not scan them as I recently gave up my cell phone data plan but next time we’ll geek out with Daddy’s phone). Sabine and I consulted the map before leaving and decided to take the red trail out and then loop back on the yellow for a nice 3 mile round trip. Throughout the park there are tiny White Connector Trails if we needed to cut things short.
Sabine hiked the first 1/4 mile on her own, stopping here and there to collect rocks and sticks to put in her Sabine-sized bucket. This $1 bucket from Target is seriously one of the best purchases in a long time! It think it is meant for crafting and not really for playing because it is metal and very small, but the small size fits Sabine just perfectly. Most buckets are way too big for her to easily drag through the woods.
Here is a little video of her hiking. Excuse my loud annoying voice :)
We also paused for a picnic lunch – homemade maple almond butter and ligon berry sandwiches on homemade whole wheat bread, apples, protein muffins & crackers. Yum!
We had a special friend come along on the hike – kitty! This kitty was mine when I was a little girl. You can wind it up and it will spin the ball around. Sabine is OBSESSED with it and drags it all over the place. This would be kitties’ first hike in her 30 some years of existence
After a while Sabine ran out of hiking steam so I popped her in our soft pack (a Cat Bird Baby pack!) and we pressed on, inspecting things as we went.
Mt. Kisco is about 45 minutes north of NYC and the trees are a little behind ours as far as leafing out. The skunk cabbage was also a little smaller than what we have around us. I love seeing what subtle differences 45 minutes can make in the flora and fauna!
Sabine had so much fun on our hike and sang “walk walk walk” for quite a bit of it. Here is her sweet little voice singing walk walk walk as she rides in the carrier.
And last, but certainly not least, we have a great big rock that was just so pretty in striations and color!
Would you like to see regular posts about our hikes? I take photos and little videos of each one and keep little notes on what we thought of the trail. I’d love to share if you were interested, but do realize that not everyone gets excited about more photos of trees, rocks and skies. :)
Motherhood has bestowed many a gross duties (or more accurately, doodies) upon me. Today, though, I had the grossest – collecting three hot, fresh, steamy poo samples from my lovely daughter. After a day of massive pear and black bean consumption. Yuck.
Real post about life and my cheapness coming soon!