Sabine started physical therapy this week. She qualified for state-funded Early Intervention services back in January but due to a shortage of therapists in the Bronx they were having a hard time placing her. The geneticist urged us to get her into private therapy saying that this is honestly the one thing we can do to help Sabine. A quick call to our insurance revealed that even out-of-network providers are covered so why not go with private practice? This way we also receive therapy three times a week (Early Intervention would have only been once a week) and should have her up to speed come fall when she starts preschool.
In other news, Sabine is doing great with her speech therapy. She adores Ms. L and so do I. We received our progress report this week and I am pleased to report we have well over 30 single words and she is finally starting to repeat things we say. She is still very shy around peers and other folks and prefers to communicate with them via sounds and gestures, but this will come in time. I was a shy kid, too, Sabine and I came out perfectly articulate!
And finally, all of her non-genetic testing has come in. Sabine has a clean report from her gastroenterologist and has no signs of a malabsorption problem. We are awaiting a review of a food log from her dietician, but the GI really expects nothing to come from this. Sabine is a picky little eater but she does maintain a pretty healthy diet and her calorie intake is about on par with what it should be for someone her size. We met with a urologist following a UTI and an alarming ultrasound of her kidneys. She explained that Sabine’s kidney abnormality is so minor that it we should not worry. If we do suspect another UTI, though, we need to take her to Children’s Hospital to have a catheter placed (something our Ped office does not do) so they can collect a clean urine sample. If more UTI’s occur we will investigate further, otherwise continue as we are and make sure she stays hydrated. And our trip to a kidney specialist to check for a rare condition that would have caused acid to build in her blood and stunt growth came back negative, too!
So far all is looking good and Sabine is turning out to just be a tiny person with big parents – which is ok in my book! One of my dear friends from home connected me with another mom who has gone through something very similar with her tiny kid. It was nice to hear that he is now three, caught up in gross motor and speech and is tiny and thriving.
I am continuing to work on being kind to myself and not blaming our actions for her delays. I have had countless specialists assure me this is not our fault, but it is still hard to not feel otherwise. I spent yesterday afternoon snuggled on the couch with her, letting my tiny kid nap in my arms and reflecting on how lucky we are to be parenting such an awesome kid. I want to focus on how lucky SHE is to have landed educated, loving parents who will move heaven and earth not just to bring her into this world, but to help her thrive.
And now I hear her starting to stir. Time for our morning milk and to get ready for a busy day – PT and then a special trip to the zoo! What are your plans for today and the weekend?
My Wednesday Yoga instructor always ends and begins class with an exercise in breathing in and breathing out kindness, compassion and peace. Those words resonate with me for the entire week and often shape how I go about a day, how I address my cashier, how I help an elderly person on the train, how I offer a kind word or glance to a teen girl clearly feeling the weight of the world.
I may not always be a Pinterest-worthy, mother-of-the-year type mom, but I know I am doing a good job. A quick trip to the toy isle of Lot-Less (a Big Lots-type store in NYC) has really driven that point home. Sabine has been to so many doctors appointments in the past three weeks. Between her appointments and my appointments we have spent more time than I care to calculate sitting in waiting rooms and crinkling paper sheets – a very boring thing when the weather is warm and the sun is finally shining!
So this week I took Sabine to Lot-Less to pick out a new toy as a reward for being such a patient girl. She has been really into babies lately so I showed her the options.
“BABIES!!!” she cheered.
“What baby would you like to take home? You get to choose your new baby.”
She looked at her options – little kid dolls, Barbie-type dolls and newborn dolls – and made a selection. A small newborn baby doll that had a slightly creepy face and really wrinkly feet.
“Do you love this baby?”
“Baby!!!” she cheered as she reached her hand into the box and stroked the baby’s head.
“Ok, then this is your baby. Let’s go checkout!”
We purchased the baby and walked home. Since then, Sabine and baby have been inseparable. I heard her saying “Milk, Milk” and looked in to see her trying to shove baby into the top of her shirt to nurse it. I showed her how to lift her shirt and offer baby warm milk.
Then she carried baby to the nursing pillow and announced “MILKKKK!” (she really accents the “k” sound and it is adorable) and laid down with baby on the pillow.
She realized baby has a bellybutton and tickles it. She asks me to help change baby’s diaper. She dresses baby, rocks baby, puts baby to “nigh nigh” and brings baby to meals. She even brought baby into Home Depot and wedged it into the shopping cart with her.
I love seeing how nurturing she is with this baby, and with her animals and pets. She is so gentle, so caring, that it makes my heart explode. Yesterday I wanted to sing from the garden isle of Home Depot that yes, she might be tiny and she may be a tad delayed but my gosh if she is not the kindest tiny person you have ever met? And that, y’all, is what is going to make the real difference in the world. Not that she was an early talker or walker, but that she is kind, compassionate and peaceful.
I slept well last night and dreamt of happy days with my child. Now I’m going to go have a happy day.
Thank you all for the kind words and support during our tough time, and for the gentle reminders that there is more to life than diagnosis. It warms my heart to know that this is still a place I can turn to for wise words from women who have walked a similar path.
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….