Welcome to my blog!

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

Wednesday, February 3, 2016

Ryan has been sick for a week. He keeps regularly going 24+ hours between throwing up, which is super weird to me. I kept him home from school again today because he threw up while still asleep last night. The kicker? I was sleeping in bed with him. Yeah. Ick. Good thing I love him so much. We could definitely use some prayers for him to feel better!

Getting them both dressed to take Lauren to school this morning was actually less challenging than I expected, though we did miss the chance for Lauren to walk to class with her friends. She did NOT like this and went and sat on her (empty) bus bench to wait for her friends. She was very happy to show me the way to her classroom though!

My mom offered to keep Ryan so I could nap since I was up all night with him. It was great, I dropped him off at her house, came home and got Lauren off the bus and then I napped while she napped. It was pure bliss. I haven't slept well at all since he first got sick last week! A midday nap was just what the doctor ordered.

While I was rocking Lauren to sleep before her nap she said, "Mom, want sing!" So I sang Rockabye Baby. In our house, this progresses to Rockabye Mommy, Daddy, Lauren and Martha (the cat). Today it ended in, by request from one almost-four-year-old, in Rockabye Hummus! I laughed through the whole song and then she was laughing too. She really, really loves hummus.

When she got home from school I emptied out her backpack and she had some artwork. One was a tooth-shaped paper because they've been learning about the dentist. The other was a paper cutout of a person that she drew eyes and a mouth on!!! It also had a band-aid on it and when I asked her what happened she said, "Band-aid!" She is one smart cookie.

Then I rocked her to sleep tonight and she kept snuggling her little face into my neck. Every once in a while she would give me the tiniest kisses on my neck. She is the sweetest girl ever.

My mom took her out to dinner and to gymnastics tonight so I could grocery shop alone. Ryan got to stay home for some father-son bonding time over video games.

My mom said Lauren did awesome at gymnastics! She usually does pretty well. She has an awesome teacher who is amazing with Lauren. Really, she goes above and beyond what I could expect out of a non-adaptive gymnastics class. Today they worked on the balance beam, which Lauren cannot/will not do. Her PT at school tries it but she doesn't feel steady enough. So today in gymnastics they were walking on the low balance beam and were supposed to jump over a little stuffed animal. Lauren can't do that either. So instead, she walked with one foot on the balance beam and one on the floor (super low balance beam!). When she got to the part where they were supposed to jump over the stuffed animal, Lauren picked it up and kissed it!


Saturday, January 30, 2016

So incredibly blessed.

Tonight was one of those kind of nights that make life so, so worth living. Lauren was so engaged and animated! She sang tons of songs, we danced. She likes to sit Indian style in my lap, facing me. Then she rests her arms on my chest so our faces are literally touching.

She was just killing me with cuteness today! She had been picking more phrases every day and saying the funniest things. Here's some of her newest phrases:

"Go away!"
"I can't"
"Want more water, please"
"Ryan's a boy"
"Me count!"
"Be right back!"

She is starting to learn her colors. She will initially call everything blue, but if you press her for an answer she can often give the right one. She can count to 3. She can draw a circle if I draw one first. We ate dinner at my parent's house last night and my dad grabbed a bottle of wine and Lauren yelled, " wine!!". It was so funny!

She has been super affectionate, telling us "I love you" frequently. I asked her today if she wanted to go to the mall tomorrow and she was pretty mad that we weren't going that very minute.  She loves school and tells me about her friends by name.  She recently charmed her gymnastics teacher into a tour of the competitive area, she was so excited!

Never ever did I imagine that almost 4 would be like this. I couldn't think that far ahead when she was a baby and certainly not while I was pregnant. She turns 4 in just two weeks. How did we get here so fast?

I'm sure most people in the special needs community have read Welcome to Holland. If you haven't, you should! People either love it or hate it. I love it. I got a shirt recently that says, "Holland Tourist. Its beautiful here." And it really, truly is. I could go on and on about what Lauren has taught me so far in the 4 years I've enjoyed being hers. She has taught me to slow down, enjoy each moment and to take pride in every little accomplishment (for both kids). I've learned to celebrate the little things with just as much vigor as the big things.

For the life of me, I just cannot imagine why God chose me to be her mama. It is an honor I'm sure I don't deserve.

Thursday, December 24, 2015

Big news!!

I have to share some big news...

RYAN ATE A CHEESEBURGER!!!!!

Those of you who don't know my family may not get it. But anyone who has a kid with major food issues knows this is MAJOR!!! He has never eaten meat, not even as a baby. He used to eat chicken nuggets but now won't anymore. His only protein source is peanut butter.

I am so so proud of him!! 6 is going to be a big year for him!

Saturday, December 19, 2015

He's SIX!!!

Ryan celebrated his 6th birthday yesterday! I can't believe my tiny baby boy is growing up so fast! I'm sad that Greg is not in any of these pictures, he was there!


God's bigger picture

My poor blog has been neglected for months! Time flies when you're having fun. Working days is a whole new ballgame for me and almost five months letter I'm still settling in to a routine.

I thought I'd take the time the explain, from the beginning, how I came to work at my new job.

My husband's grandparents were wealthy. They donated a lot of money to a lot of places. When we found out at 18 weeks pregnant that Lauren would be born with Down syndrome, they told us they had donated a large sum of money to a clinic for kids with special needs (I believe they donated well before we knew Lauren would be extra special). They were invited to a donor's tour kind of thing and they invited us to go with them to see what it was all about.

We went and it was awesome. We met the doctor who ran the clinic and the first thing she said was "Congratulations!" with a big smile on her face. That was the first time since finding out our baby had Down syndrome that someone who knew congratulated us. We got to listen to a presentation about the purpose for the center, the doctor talked about her passion for kids with special needs and her vision for what the clinic would accomplish. My husband and I both had tears in our eyes from listening to to people talk about a place of true acceptance. We couldn't even picture that point in our journey yet.

I was just barely a nurse at this point, having passed my state licensing exam but not even thinking about working yet. I was disappointed because so many of my friends from nursing school were working and I couldn't see past our current crisis. I remember thinking that my life dream would be to work there. But as a brand new nurse with absolutely zero work experience, I kind of brushed it aside in my mind.

Fast forward to four years later, I was working in the hospital on midnight shift and browsing internal job postings. I saw a position open for a RN at my dream job! I applied, thinking it wouldn't hurt but I would likely not hear anything since I only had adult inpatient experience.

You know the rest. I interviewed and got the job. I feel like God had this planned the entire time. In my grief of getting Lauren's diagnosis all I could see was the present and that my life would be so different than I had ever imagined. I probably wouldn't even know such an awesome place existed without being Lauren's mom. This story is such a testimony for me to always trust that God has a bigger plan, but only reveals small parts to us at a time. I LOVE my job. I have the honor of working with amazing people who have dedicated their lives to making a difference in the lives of families who are raising differently-abled kids. So many of us have an awesome story to tell about how we became part of the team. My very first day on the job a beautiful boy with Down syndrome gave me a hug. I felt like that was one of the moments in my life where I felt with 100% conviction that I was exactly where I was supposed to be and doing exactly what I was supposed to be doing. I feel like I am such a small piece of the puzzle but I am so incredibly honored to have this job.

Lauren is now almost 4 years old! Her birthday is in less than two months. She is my biggest testimony that unanswered prayers are sometimes the  biggest blessing.

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!