Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, September 16, 2015

Musings


Today as I rocked Lauren to sleep, I felt the soft puff of her exhale on my neck. She had her arms wrapped around me and her legs around my waist. She lifted her chubby, short-fingered hand up to feel my smile, then signed "I love you". I could barely make it out in the dark.

I kissed her almond eyes and traced the shell of her small, folded ear with the pad of my finger. I softly rubbed her chubby neck and kissed her single-creased palm. I thanked God for her healed heart and for her hard won accomplishments.

This is Down syndrome. And I am blessed.

Lately I am struggling with Lauren's delays. Some days she feels so behind her peers. Other days I am amazed at all she can do. My sadness at her challenges and the sorrow in some times feel when I think about her future pops up like an unwelcome guest that refuses to leave.

My child is not like her peers. She is disabled. She has special needs. She. Is. Different.

Its been three and a half years since she was born. Almost four years since my twenty five year old self got a diagnosis that I never expected for my unborn daughter. Shouldn't I be over it? Shouldn't I be on the acceptance stage on the continuum of grief?

The truth is that grief is not linear. It doesn't follow the rules and it does not care about acceptance. Grief and acceptance are not mutually exclusive. Love and sorrow can, and often do, coexist.

Down syndrome has changed my family, thrown a wrench in my plans and given me new purpose. It has shaped the features of my daughter and made her so incredibly beautiful that most of the time I can't believe I made her.

I am owning my grief. I am owning my acceptance. She is mine and I am hers.

Love makes allowances for feelings that don't match, for emotions that contradict, for hope and fear to melt together. Love conquers all.

Saturday, September 5, 2015

Lots going on

I haven't updated in a long time. I'd like to say that its because nothing is going on, nothing related to Ds, etc. But really I've just been too busy!!

I left my job and started a new one. I'm now working in a clinic for children and young adults with developmental disabilities. Its new, challenging, rewarding and FUN!

Lauren got glasses. She was having strabismus, one eyenwas turning inward. If we didn't correct it she'd lose her vision in that eye eventually. I thought she would immediately take them off but she really has done amazingly well. I think it may be because they're helping her see a lot better.

Both kids start school on Tuesday. Ryan's going to be in kindergarten and is so excited! I finished shopping for school supplies today and he was so excited to organize his backpack.

Lauren is doing her second year of early childhood special education preschool. She's re-doing the 3 year old class because she was so young last year. We're hoping to get two 4 year old years too but that is definitely wishful thinking! She will have the same teacher this year, which we are so thrilled about!! There will also be another little girl in her class with Down syndrome, which I feel is such a blessing. Her name is Hope, we've hung out with her sweet family a couple of times.

We're still getting settled into the new  house, Greg's almost done with our main bathroom. He and a family friend gutted it and replaced everything. Its going to be beautiful. More so because we will have a working bath tub again. Ryan can take showers. Lauren panicks with the noise and water spraying her. We actually just finished up a sink bath and almost flooded the kitchen!!

Speaking of noise, Lauren has shown some significant sensory issues with loud noises over the summer. I know its pretty common with the Down syndrome population but I just feel so bad for her! We were driving in a thunderstorm this week and the rain and thunder were LOUD. She was covering her ears in the car and pleading "All done! All done!".

Little Miss also did a pretty intense therapy program this summer! It was speech, OT, and music therapy in a preschool setting. The price almost made us decide not to do it. I'm so glad we did because it was hugely beneficial! Lauren is talking so much now! She still signs, but her speech is often even clear to strangers! It's so amazing to hear a full sentence from her. Her nonverbal communication has improved too. She fell and bumped her head yesterday and when I asked where it hurt she pointed to her head!