Well, well, well do I have some news for you!
It’s been several months since I last blogged and here’s a big part of the reason…
SURPRISE! WE HAD A BABY!
Or more accurately: SURPRISE! I’VE BEEN PREGNANT while trying to care for two toddlers, keeping up on Cami’s therapies and appointments, installing new floors, building an entertainment center for family movie nights, working despite several childcare closures due to COVID exposures, and preparing for a new baby! Oh – and hubs was deployed several months in that time.
Last week, all the craziness and exhaustion of the last few months came to a close as we opened a new chapter and welcomed our 3rd baby girl to the family! It’s official -- we’ve got our own little SISTER SQUAD and we are all happily settling in as a party of 5!
But, there’s another reason I’ve been quiet about this pregnancy – the special needs momma experience has changed me.
I’ve tried to write this many times, but something kept holding me back.
Just one more appointment… one more test result… one more ultrasound… to make sure everything is still OK.
Before Cami’s Angelman Syndrome diagnosis, I assumed we’d have more kids, but for many months her diagnosis made me wonder if that opportunity had been robbed from us like so many other things a rare syndrome can take from you. At the start of 2020, something began to change – the weight of Cami’s diagnosis began to lift. We had established a wonderful care team, a therapy schedule, and had adjusted to our new normal. My husband and I reopened the conversation of adding another little one to the family. There were a few things that helped us make this decision:
Cami’s Angelman Syndrome is caused by a genetic deletion on the maternal side of her 15th chromosome. I confirmed with genetic tests that there is nothing I could have passed to her. So there is a less than 1% chance that another one of our children would have AS.
We believed another sibling would bring joy to both of our girls. Assuming we had another typically developing child, we thought it best that big sis has another sibling to experience the special needs sibling life with. For Cami, we thought it best that she also be a big sister and not “the baby” of the family. We believe a little sibling will help encourage her forward in entirely new ways.
We accepted the idea that if God were to give us another special needs child that we would all still be OK – we now had the faith and confidence that we could do this.
Throughout the pregnancy, I was excited but anxious. While it is highly unlikely this child would have AS or any other rare disease for that matter, being part of the special needs community means you know too much of everything that can go wrong through pregnancy and childbirth. With each passing week, each genetic test, each ultrasound, and each kick count my confidence in the health of the baby grew. I felt, though, that if I celebrated too early or shared too much, that I could jinx this for our entire family. Irrational, I know – but it was my reality.
Now that we have our healthy, happy, sweet baby girl home with us, I’m elated to share the news that she is here and our hearts are full! We know that there is still always a chance to receive hard news about your child, but we are wildly grateful that so far her genetic tests are coming back clear, she does not exhibit the same early signs that Cami did at this age (muscle tone, sensory issues, or feeding issues), and she sleeps and eats like a champ!
As for the Sister Squad – big sis and Cami are loving their new baby sister! Big sis continues to be the ultimate little momma and loves to help wherever she can. Cami takes my hand and points it to her baby sister anytime the baby is not close enough to her – she wants her to be within arm’s reach at all times. We do have to remind Cami often to use “gentle hands,” but she loves giving the baby hugs and kisses. Cami also has the best full-belly laugh each and every time the baby sneezes! We can’t wait to see how their relationships evolve over the years.
Thank you for being part of our journey with Angelman Syndrome and for your continued support. Questions? Just ask!
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