When Maddie was born, there were a lot of things about Down Syndrome that we knew nothing about.
Hours after she her birth our pediatrician came in to tell us the news.
She said she was about 90% certain Maddie had Down Syndrome but the blood tests would be ran to confirm it.
She listed several physical characteristics: almond eyes, flatter bridge on her nose, the turning in of her pinky finger, the extra space between her big and little toes, something about her chest, etc.
I had no idea there were so many physical attributes unique to Down Syndrome.
My favorite is the brushfield spots in her eyes. (they are beautiful!)
In terms of her physical attributes, it was rather delightful learning all these things about our new daughter.
We were surrounded by positive energy, a loving family, and an extremely helpful support group.
We knew there was an increased risk for:
- thyroid disease
- type 1 diabetes
- heart defects
- leukemia
What no one ever mentioned is the likelihood of a dual diagnosis.
Maddie has a dual diagnosis of Down Syndrome and Sensory Processing Disorder.
In everyday life it means Maddie does not have a sleep/wake cycle.
She's physically incapable of falling asleep before 9:00 or 9:30, sometimes 10:00 each night.
She sleeps for a few hours and then comes to our bed around midnight or 1 am.
Once she gets to our bed, she does not have a sense of grounded-ness and is constantly needing to find her boundaries.
Which means she uses her legs to push on me throughout the night for an awareness of the space she's in.
Otherwise, she feels like she's in a free-fall all night long.
As a result of all of this, I've developed a few sleep/wake issues of my own!
Usually around 3 am, I make my way to the couch to try and get some sleep.
Insomnia sets in and I have to work really hard to get back to sleep.
Insomnia sets in and I have to work really hard to get back to sleep.
SPD also means that Maddie grinds her teeth nearly constantly throughout the day.
Because of that, we can add Cranial sacral Specialist to our repertoire of specialists we now have in our schedule.
We are trying to prevent headaches and issues with TMJ.
I also need to contact her ENT because she has began snoring at night and has an increased risk of sleep apnea.
It's not just the physical issues we are dealing with.
She has reached the defiant stage in her development and her behavior has really been challenging to say the least.
It's overwhelming and exhausting and I know every Mom out there with special needs kiddos knows exactly what I'm talking about!
We stay awake at night wondering if there are any other issues we have overlooked or need investigating.
We over analyze the small things.
We wonder if our kids are really able to understand what we are trying to teach them.
We have to remember medications, work in daily therapy, yet try our best for a "normal" life experience.
Yesterday a friend asked me if I ever ask why God made her disabled.
The question surprised me.
Maybe I've been too busy to ask why. Ha!
I'm not sure it's worth expending too much energy, but it's not necessarily a bad question.
I may not ever fully understand why.
I do trust there is purpose here.
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