Celebrating Milestones

Princess Campbell
My beautiful, sassy daughter Campbell will turn ten in a week. I’ve asked the age-old question, “where has time gone?” a time or two lately. It seems we give birth to these precious babies, think we will never get through the toddler years and then all of a sudden, they are growing into young adults.
There are so many milestones along the way that we look for our children to accomplish. As the mother of a child with complex medical needs, those are very different than the ones outlined for a “typical” child. Sometimes those milestones are never met.
Even within the special needs community there are various manuals and charts for a child with a more common diagnosis such as Down’s syndrome or autism. With Campbell, she falls under the undiagnosed category even though she has a list a mile long of disorders according to her medical chart.
Cerebral palsy, bilateral cleft lip and palate, epilepsy, sleep apnea, low bone density, feeding tube, tracheostomy. The list goes on.
Cerebral palsy was what her doctors finally gave her as a diagnosis, primarily for insurance coverage. It’s essential to have a diagnosis to get insurance coverage.
However, all of those things listed above are more than likely a part of a syndrome that either is so rare it has been unable to be detected or she is the only person to have the disorder.
One in a million. And that’s what I like to think. She is unique. One of a kind.
But with that is uncertainty. There is no real prognosis. No pathway for doctor’s to follow or guide us through. I try not to get caught up in the unknown as I did early on in our journey of finding out what was “wrong” with Campbell. Now I don’t even like to look at it as something that is wrong with her but rather it’s just who she is.
One milestone we do celebrate is her birthday, which could be a mixture of happiness and sadness. Sadness for all the things she can’t do that a “typical” ten year old can. Things like playing basketball or taking dance lessons.
Instead I choose happiness by not looking at what she can’t do, but rather what she can do. After all she has been through, she has come out as a spunky, fighter overcoming more obstacles than one can imagine.
I often find myself celebrating behaviors that others may think aren’t the best for their children. For example, she told me on her communication system “Mommy is loud” or today she told me that she wanted me to return the birthday dress I ordered her. She didn’t like it.
These were “typical” behaviors of a ten-year-old girl and I was so overjoyed by her attitude that I couldn’t stop smiling. And neither could she.
She was so proud of herself being able to express her feelings. And isn’t that what every parent ultimately wants for their child? To be happy.
As we prepare to celebrate this milestone, I reflect on the good and the bad over the years. Although some my say that our journey has been harder than others, I focus on the good times. Her strength and joy that she has taught me to embrace. I’ve learned not to take anything for granted and to enjoy every moment with her.
Happy Birthday Campbell. I love you to the moon and back.

 

Birthday Cake

 

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About the author

Michelle

Michelle is a writer based in Richmond, KY who is trying to navigate special needs parenthood and life in an imperfect world, all while keeping her sanity. She is on the board of the Bohring-Opitz Syndrome Foundation and is a contributor to The Mighty and The Today Show Parenting Team. She'd love to hear from you! Send her an email at michelle@chasingthecleavers.com.

2 Comments

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  • Michelle, You are the perfect mother for Campbell and for Matthew. You may have had to become the fighter and advocate for your children that you are, but you do it with outward grace and enthusiasm. And i am sure it takes lots of inner strength to do that. Keep up the great work and give yourself credit for the great job you are doing. I’m sorry we had to miss the party. Love to you all, Becky

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