Celebrating a Year of Growth! (And the hard moment that helped me appreciate how far we've come.)

I had a “bad mom” moment this week.

It started after dinner. Cami wanted my attention while I was feeding the baby so began grabbing my clothes, arm, and hair to get it. “Ouch!”

Then, it was time for baths and I attempted to carry Cami and our new baby upstairs at the same time – terrible idea. Cami is over 30 pounds now and doesn’t hold onto you when being carried. She often reaches for things along the way, so it’s easy to lose your grip on her. “I need you to settle so no one gets hurt!”

I followed our typical pre-bath physical therapy routine encouraging Cami through a sit – kneel – stand transition to get into the bath, but she insisted on buckling her knees. “You can do this!” failed several times – I was frustrated.

After bath, I encouraged Cami to stand while zipping up her pajamas, but she continued to refuse physical therapy exercises. Now I’m aggravated and begging, “Help me out and stand up PLEASE.”

We ended with the thing we both dread – brushing her teeth. She shook her head side to side and cried, fearing the sensory input she hates so much. I pinned her arms and opened her mouth also hating that I have to force her through this. UGGGGHHHH!

Through it all, Cami was laughing which certainly isn’t the response a parent is going for in these moments. But, laughter is one of her most reliable forms of communication – a common trait of those with Angelman Syndrome. As I got more upset, she laughed harder but looked at me with worried eyes as if to say, “I’m sorry, please don’t be mad!”

I held back tears of exhaustion, frustration, and sadness as I kissed her on her forehead, told her I loved her, and laid her down for bed.

Then, I went to my room and cried my eyes out feeling ashamed for how angry I just was with my special needs toddler for all the things she can’t control – for all the things Angelman Syndrome takes from her.

Truth is… It’s hard to not get frustrated over the things Cami works at every day that come so naturally to most children.

It’s hard to not know what your nonverbal child is trying to tell you. It’s hard to quietly, secretly even, hold on to the sadness that the last time we celebrated a gross motor milestone was nearly two years ago when Cami began sitting on her own.

It’s hard to not measure success by milestones.

Hard moments are a real part of this journey. For me, the way out of these moments is to turn my attention to how far we've come -- not how far we have to go.

So, as we get ready to celebrate Cami’s 3rd birthday, I want to take a moment to celebrate the INCHSTONES and the PROGRESS Cami has made in the past year because we know how hard Cami worked for it and how much learning, patience, and sacrifice we’ve made to help her get there:

- She’s tried new things including hippotherapy (horse) and aquatherapy.

- She’s finally motivated to discover new things and explore her world, a critical step in functional play, motor development, and learning.

- Her fine motor skills and pointer finger have improved greatly which provides an essential foundation for functional skills she‘s working on like coloring, using utensils, and accessing a communication device.

- Her gross motor skills have become much more fluid and dynamic. Her core strength, movement in sitting, and form in sit-to-stands and transitions continues to improve.

- She learned to love the swing, an activity that used to give her far too much vestibular and sensory inputs – the playground is much more fun now.

- She’s mimicking some behaviors and following simple prompts like picking up the washcloths as we wrap up bath or handing over a toy.

- She’s making and communicating choices by looking, pointing, handing things over, and even by using a basic communication device to say “I’m thirsty” or “television.”

- She’s learning! It can be hard for her to show us what she knows, but we’re confident she’s picking up animals and animal noises, for example, by the choices she’s making in books and puzzles.

- She got new AFO’s (foot and ankle braces) which help a lot with standing exercises.

- She’s totally ready for an Alternative & Adaptive Communication (AAC) device and has started sessions with her new speech therapist that will help us get started on one.

- We conducted her first IEP and she’s ready to start preschool.

- We advocated like crazy in our first ever International Angelman Day, our first ever Rare Disease Day, building our Cami Can Cami Will team, and participating in the Angelman Syndrome Foundation walk.

- We made our TV debut when we shared how much we love being part of the new 15q Clinic at Children’s Colorado!

- She camped under the stars for the first time.

And my personal favorites…

- She said “MOMMA!” for the first time! It was only once but I’LL TAKE IT!

- Cami became a BIG SISTER and loves giving baby sis kisses and hugs.

- We are closer to seizure control than ever! We tried many diet and medication modifications this year and we are THRILLED to report that in the past few weeks, we have witnessed several days with ZERO seizure activity for the first time in 18 months!

Yes it can be frustrating, disheartening, or even maddening sometimes that Angelman Syndrome has made basic skills so difficult for Cami – but, we’ll never lose sight of the fact that CAMI CAN accomplish anything she wants and CAMI WILL do it with just a little help and support along the way. Because of the hard work accomplished over the past year, we are very excited to see what the next year will bring for Cami. We expect it will be a HUGE year for motor and communication gains! By time she turns 4, we are very hopeful Cami will be loving preschool, using an AAC device regularly, and *hopefully* taking her first steps.

Due to COVID-19 (and because Cami doesn’t love crowds anyways), we’re skipping the big party for her birthday this year and giving Cami what she truly needs – life-changing therapeutics and a CURE for Angelman Syndrome! Please join us by donating to the Foundation for Angelman Syndrome Therapeutics in Cami’s honor.