I've always loved Christmas. I look forward to putting up decorations and shopping for everyone on my list. Before kids, we traveled to be with our families for Christmas, keeping family traditions alive. With our first child came new traditions including pictures with Santa, cookies left out at bedtime, and staying up way too late to put together princess tents and doll houses.
Earlier this year, we received our youngest daughter's diagnosis that changed so much -- more doctors, appointments, medications, therapies; more conversations of financial planning and special needs trusts; and more learning, raising awareness, and advocating. At the time of her diagnosis, it seemed as if everything we had envisioned for our girl and our family had disappeared in one short conversation.
What would birthdays and holidays look like now?
Add this to the long list of things I grieved after her diagnosis.
She'll never be able to write a Christmas list or tell Santa what she wants.
She may never run down the stairs with her sister on Christmas morning.
If she's on a seizure-control diet, she may never get to have Christmas cookies.
What else?
Truth is, some things have changed:
I am a different kind of tired.
You don't need to be a special needs parent to relate to this one. Life throws your curve balls and some phases of life are busier and more exhausting than others.
For me, this means I'm letting go of perfection. Our stockings are unevenly hung, there's a strand of lights on the tree that doesn't match the others, and extension cords are hanging from the house. I'm not sure that I'll get time to pick up matching Christmas Eve jammies for the girls and we hope to get to making cookies - but we'll see!
It also means I'm saying "no" to more. In past years, we loved hosting and attending holiday parties. This year, we aren't making quite so many commitments.
I am a different kind of giver.
Our gift buying strategy has definitely changed! Gone are the days of enjoying Christmas shopping in malls and stores. This year, online shopping ruled in this household.
And, the types of gifts we are buying has become more strategic. SPOILER ALERT: If you're expecting a gift from me, it probably has something to do with Angelman Syndrome! #sorrynotsorry. Cami's diagnosis is now a huge part of our lives and is clearly reflected in a few of the gifts we settled on this year:
Many of Cami's gifts will help promote developmental growth and can be used in physical, occupational, or speech therapy. For example, Mr. Potoato Head encourages fine motor skills and body part vocabulary words, a bag of texture squares will help us continue to add sensory inputs and desensitize her hands, and board books with sounds will promote cause & effect learning.
For big sis, we know she is going to be interacting with the special needs community more than most so we talk about the importance of kindness and inclusion often. One of the things she'll be receiving is this book on kindness. BRAG ALERT: I took big sis (3) shopping to pick out gifts for her family. I was so very proud of her when she chose this "Mommy, Make me Better" plush baby doll for Cami. It's a doll that gets sick and needs to be cared for just like Cami often does.
If you're still on the hunt for gifts, I'd highly recommend checking out the following:
A Gift in Cami’s Honor — we’re still raising funds for the Foundation for Angelman Syndrome Therapeutics to help find a cure for Cami and kids like her!
The Ultimate Amazon Special Needs Shop -- designed by a fellow Angelman Syndrome momma!
Littlest Warrior Apparel -- featuring great special needs awareness building products including my favorite Advocate Like a Mother shirts and Eli, Included, a children's book. BONUS: They donate 10% of sales each month to a family adopting a child with special needs, to a family in need of help with medical bills, or to a foundation.
Jackson & Baden's Soap for Hope -- a grandmother of a child with Angelman Syndrome started this business with proceeds supporting the Angelman Syndrome Foundation! I purchased these for all of our therapists this year and can attest that they smell so good.
I am a different kind of grateful.
While a lot has changed this year for our family, a lot has stayed the same and there is even more to be grateful for:
We are together.
We have the most supportive family and friends.
Cami's seizures are currently manageable and she's making progress every day.
Big sis is learning so much, showing wonderful kindness to others, and is the best big sis.
The Angelman Syndrome community and Cami's team of providers has become some of our greatest blessings.
Despite receiving some of the hardest news of my life this year, I'm entering into 2020 with faith, hope, and optimism!
From our family to yours, wishing you the happiest of holidays!
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