Welcome to my blog!

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

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!

Sunday, June 28, 2015

Update

Its been a while! I'm not even sure if I have any readers left!

We've been enjoying the heck out of summer so far! We went up north (northern MI) as a family which was so, so fun. We got to go to Mackinac Island, where Greg amd I had our honeymoon. My Ryan is conquering fears left and right and even jumped off the dock into the lake by himself. Lauren was a little to eager and almost turned swimming into drowning, which scared the crap out of everyone.

This week we had a carnival in our city and Ryan rode on all the rides, tried some hot pretzel and got a lot of exercise! We found out neither kid likes cotton candy, which is so foreign to me!

Lauren's just started her summer therapy program. She goes twice a week for 2.5 hours, its OT, speech and music therapy in a preschool type setting. She's been doing so well with speech lately we just felt it would behoove us to keep her in a classroom setting over the summer to prevent any regression.

We're all moved into our new house and adjusting well. It feels kind of like we'll never be done moving in or completing projects but I'm surprisingly totally okay with it. I am LOVING our new house and neighborhood. Its awesome being back where in grew up and I've already run into some old neighbors. This adventure is so, so fun and I'm really enjoying my dream house. I feel so thankful to be here.

Today at the carnival we had Lauren in her wheelchair. Its like a stroller on steroids! We came across a man with his friends, he was in a wheelchair too. He took one look at Lauren and said, "You're lucky, you have people pushing you!" I love when people aren't afraid to acknowledge a wheelchair, or Down syndrome or something different. That's something I really hope to reach my kids- different is more than okay! I want them to know it's a good thing to be different and to have friends that are different too.

I can't wait to see what the rest of the summer holds! We're having friends over for dinner this week and hosting a party of the 4th of July, both are sure to be so fun!

Saturday, May 2, 2015

Lots of news

We have had a LOT going on.

We sold our house! We should (fingers crossed) close on our new house this week. We're staying with my in-laws for the time being. We never expected to sell our house so quickly!

Lauren had her ballet recital today! It was so much fun. She took some major prompting to actually dance, but she did it. It just also included fruit snacks, her stuffed lamb and mommy all on stage with her!

The real star of today was Ryan. He was so sweet all day! He shared ice cream with Lauren after her recital with no prompting. Then we went to target and the kids were thirsty. I bought a bottle of water, planning to pour some into Lauren's sippy cup once I returned our cart.

While I was returning the cart he shared the water with her and helped her drink out of the bottle. She didn't have a drop on her clothes. Can you imagine the care that must've taken? For a five year old? Swoon. He is one amazing big brother.

Friday, March 13, 2015

Deciding to be done

I have agonized over the decision to have another child for the past three years. Greg has always wanted two children. I had always wanted three.

I hated the thought of Lauren having Down syndrome having any part in our decision. Because I would choose her over and over again. And I would welcome another child with Down syndrome happily.

But I also know how to protect myself and my heart. We are at a greater risk for a baby with any chromosomal disorder, not just Down syndrome. Sometimes I feel like I barely came out alive after Lauren's hospitalization, illness and surgery. I'm a totally different person than I was before we had her. I'm still not totally sure if I like myself better then or now, but the result remains the same. I am different. Anyone with a child who has been critically ill will likely tell you the same.

I'm not one to live my life based on "what if", truly I'm not. But I do feel that I've come to a point where I need to protect myself.

When we found out Lauren had Down syndrome we were offered termination. I immediately and angrily refused and demanded it not be brought up again. I could never choose that.

Right?
I hate the question mark that follows that word. I hate that its become a question for me.

And here is where the "what if" comes in. What if my next pregnancy resulted in a chromosomal diagnosis considered "not compatible with life"? Of course I want to think I would never terminate. But I have lived through the pain of not knowing if my baby would make it. Not knowing if I would bury her in the outfit I chose for her to wear home from the hospital. Not knowing if I would ever again hold her with a beating heart after handing her to the surgical team. I have lived through the self-loathing that comes with the failure to bond with a baby I wasn't sure I'd get to keep. And I know I can't ever put myself through it again.

I felt guilty for wanting another child- like people would think Lauren wasn't enough. And I felt guilty for not wanting another child- like people would think I was too afraid to have another child like her.

There are no guarantees in life. I know this to be true. I thank God every single day for the amazing, beautiful, healthy and PERFECT children he has blessed me with. They are my world.I am content.

I am protecting my heart with a fierce sense of self-preservation that I no longer feel like I need to apologize for. This new woman I have become since Lauren changed my life is more confident, independent, and I can now trust that the Lord has awesome things in store for our family as we are.

I am healing.

Wednesday, March 11, 2015

Meeting friends!

One of the very best parts of our Down syndrome journey is all of the friends we've made. We literally have friends all over the world who also enjoy their lives with chromosomally enhanced children. We've received gifts and cards from friemds- and most importantly for me as a mom, I know there are women everywhere who "get it".

Most recently we got a postcard from friends all the way in Indonesia!!!

I love this journey.

Saturday, March 7, 2015

Talk it up

Lauren's speech has really taken off in the past couple of weeks. It's amazing!! She will repeat anything- provided she feels like it.

Her new phrases are Let's go! and Come on!

Can you tell patience is not the strong point for a three year old?!

I am loving this. I worried if she'd ever be verbal. Obviously she is way behind her typical peers, but well, she isn't typical. I'm thrilled with her progress.

I took her out to dinner yesterday with friends and the restaurant has a ton of TVs. One of them had baseball, which apparently Lauren loves! She was shouting "Yaaaaayyy" and clapping. She also said "baseball" about ten times! Once the baseball game was over I had to get out my phone and find baseball on YouTube for her to watch. It was a riot! She ate French fries, dipping each fry in ranch dressing. She also insisted on kissing each French fry for a while, her love knows no bounds.

While we waited for our table she borrowed my chapstick and made both of us apply it multiple times. Once we (finally) got seated, she waved to the rest of the hungry and waiting crowd like Miss America and told them all, "Bye!"

She says Mom, Dad, Pa, Grandma, Tio, 'Sus (for Jesus, her cousin), Mel (for Melanie), Ry, Mar (for Martha). She can say the names of several more family members.

She had her end-of-the-year progress report sent home. She's doing really well with her IEP goals! She's met several of her speech goals. She's doing pretty good with her physical therapy goals but still needs work. She has days where she's really steady on her feet and days she falls a lot. Not too shabby for a kid who just started walking 6 months ago! She has a tiny issue with stealing her classmates' seats when they get up, which cracked me up. I can so picture her doing that! Her teachers and therapists are recommending she repeat the 3 year old class next year with continued speech and physical therapy. That is exactly what we wanted! She started early at 2.5, so we assumed she'd do two years in the 3 year old class.

Overall, life is great. And so, so different than I expected. When we found out Lauren had Down syndrome when I was pregnant I could not (or would not allow myself) to see this far into the future. She is truly a joy to parent!

Ryan's parent teacher conference went AWESOME! They said he's totally ready for kindergarten in the fall. He's really excited. I am so excited for him, yet so sad that he'll be away from me all day. It's once step closer to both of them being at school all day and I feel like I'll fall apart when that happens. Thank God we get a couple more years of half-days for Lauren.

Spring is thinking about arriving in the Midwest. Next week it's supposed to be in the 40's for a couple of days!! I can't wait to air my house out and deep clean take naps while the birds sing!

Wednesday, February 25, 2015

Smarty Pants!!

Lauren Hope is the smartest kid ever!

No, seriously! We were talking about going to Target today and she grabbed her shoes and SAID "I want to go bye bye!" My mom and dad were over and both heard it!

What?! She also said "purple" and "baby" today. She's been repeating (or trying) everything lately. This is my favorite time of toddler-hood! She asks us what everything is lately by pointing and saying "that!"

And once we got to Target she refused to pick out a toy and insisted on a book that we already have. So I let her read the book in the cart all the way through Target and quickly got rid of it before we paid. Grandma distracted her with chips and cookies! (We are so those people.)

Never in a million years did I ever expect when we got Laurens diagnosis that she would make me so proud. She is amazing. She tries so hard and accomplishes everything she sets out to do- even if her timeline and mine don't always match up.

Monday, February 9, 2015

Three year well-visit

Lauren had her three year old checkup last week, with a new pediatrician! We had to switch doctors (and to a new health system) due to our health insurance changing. I was nervous.

It went great! The doctor is a man in his mid-fifties, and Lauren was at first unimpressed. She did end up giving him a high-five which is all that can be expected since he did listen to her heart.

And the best news? Her CBC was NORMAL!!!! Over the summer she had two separate draws that were concerning enough for hematology/oncology to be consulted. So this was such a relief!

Today at school Lauren's bff (a fellow heart warrior who has her third OHS coming up soon) gave lauren a present. Its a beautiful blanket embroidered with Lauren's name and surgery date on it. Something to be treasured for sure! Lauren loves it and is napping with it at this very moment!

We are blessed.

Friday, January 30, 2015

Growing up

Just in the last few weeks, I feel like my little girl is growing up so fast. I wish I could slow it down, didn't I just have her a few months ago? She's going to be three years old in just two weeks.

She's lost her baby looks and she doesn't even really look like a toddler all that much now. She's a little girl. A beautiful, smart, healthy and perfect little girl.

When I think of how many babies with Down syndrome are aborted, I can't help but wonder. Who wouldn't choose her? Who wouldn't want her? I would choose her again, and again, and again. She is such a joy to raise. It's hard when she misbehaves (which is a lot, she is almost 3!) because she looks so incredibly cute that it just feels wrong to discipline her. Even my tough-as-nails husband agrees. He's better at the discipline than I am, thankfully. Ryan will yell at anyone who dares to be mean to his sister (including when I tell her not to do something. He just told me recently, "She can do what she wants!")

She's growing up. She's getting (marginally) better about having her hair brushed. She tries to put her shoes on by herself. She repeats everything she hears, even if it's almost impossible to understand some of it (unless you're grandma!). She loves to be read to, especially Does a Kangaroo Have a Mother, Too? by Eric Carle. She loves to dance, she loves to sing, she still loves dogs and cats more than most people like humans. She has a great sense of humor and is surprisingly clever. She has friends, she loves babies, she colors at church in Sunday school.

But my favorite thing about Lauren Hope? Her ability to love. Unashamedly, unabashedly, truly, deeply, unconditionally love. We recently had a death in the family. Greg's uncle Carl passed away. He was such a great person, he loved the Lord, loved his family and thought Lauren was the best thing since sliced bread. When everyone gathered at family's homes in the days surround his death and funeral, I'd swear Lauren was the balm to open wounds. She hugged, she kissed, she smiled, she laughed, she loved.

I'd be lying if I said Lauren's future doesn't scare me. I get panicky when I think about Kindergarten, which is more than two years away. I worry about her being teased in elementary school, being accepted in high school. I think about her getting older and needing me to encourage independence when I know for a fact I'll want her with me always.

But one thing I never worry about is her capability to love. I know that long after we've left this earth, Lauren is leaving a legacy of love that few have done before her. Lauren brings out the best in people. She meets new friends at the grocery store, can charm even the most sullen cashier out of a sticker. I don't know if she will be "main streamed" in school, if she'll graduate high school with a regular diploma, attend college or hold a steady job. I don't know if she'll get married, though I hope she gets to experience the joy of  romantic love. But I do know that she is changing her world. Maybe not the whole world, but her world, in the most positive way. We are so blessed to be her family.




Saturday, January 10, 2015

I surrender.

Parenting is rewarding, funny, challenging and sometimes it is just plain HARD!

Today was a hard day. Greg's been working a lot, this week he's working 7 days, meaning 13 days in a row... IF they don't need him to work next Sunday too. We are both thrilled for this opportunity and very thankful for the extra income. However, this means (what feels like) an infinite stretch of solo-parenting. Greg's exhausted when he gets home, he went to bed at 7:30 tonight.

I got a flat tire today with both kids in the car. Greg was at work. Thank GOD my dad came to rescue us, cutting short his workout and changing my tire- all with a smile on his face and joking with me and the kids!

Lauren is embracing her toddler-ness with a vengeance. I felt like I neglected Ryan today, and he was crabby because of it. But you know what they say about the squeaky wheel...Lo is my squeaky wheel. My adorable, loving, smiley and extremely clingy squeaky wheel.

I am worn out. I don't know when I'll possibly get a "break" next, I have commitments during my normal free-time (the 2.5 hours Monday-Thursday while the kids are in school) all week. I'm trying to set up a hair appointment for some much needed "me time" but then I'll feel guilty for leaving the kids with their exhausted dad, amazing as he is. I did great myself to an extra hot, extra long shower today after dinner.

Its just that kind of day. I feel like I'm engaged in an ever-present battle against sure defeat. I'm tired. I'm failing. And I have two little people who both need their mama, plus a wonderful husband who needs his wife. I'm blogging via my blogger app, getting teary eyed while watching the millionth episode of Tom and Jerry, thinking about how I hope this sweet boy knows how much I love him- even if some days I don't show it like I should. My house is a disaster and we're drinking water out of coffee mugs because I haven't even had time to run my dishwasher.

I'm waving my white flag today. Hopefully tomorrow is a better day.

Friday, January 9, 2015

Embracing change and protecting hearts

The past couple of months FLEW by! I can't believe it's already approaching mid-January. Ryan turned 5 last month, Lauren turns 3 next month. Insane.

Christmas was wonderful, we spent a lot of time with our families and the kids were spoiled rotten. I finally took down my Christmas tree today, with the help of my parents who came to hang out with the kids while I shoveled and cleaned my house. My mom even vacuumed the (fake) pine needles up for me! The kids had a snow day yesterday (with no snow, it was just cold) but I had to sleep so the babysitter came. Today I'm home alone with them and really having a good time! Parenting is hard but at least they're cute ;)

Ryan has been being even funnier than usually lately, which is not easy! My nephew was over yesterday and kept saying, "My hulk! My hulk!" in regards to a toy. Ryan piped up with, "It's not going to be anyone's hulk in a minute if you keep saying that." LOL! He loves to parent his cousin and sister. It's so funny hearing him repeat things I've said a million times.

A lot has changed for us lately. We've left our church and are attending a new one. For some of you, this may seem like no big deal. But to us it is a HUGE deal and a great time of transition. If you are the praying sort, please pray for us and the kids as we sort through this transition period. It's been going great so far. Greg and I have kind of jumped in with both feet and have already joined a young marrieds small group. We're not used to being new in this situation as we were leaders in our old church, but everyone was extremely welcoming and our first time went great! We're starting a new study at church with our small group next week and we're really looking forward to it.

We met at someone's house for our small group last week and brought the kids along. I always worry about bringing Lauren somewhere new because it would absolutely break my heart for her not to be accepted. I know it's bound to happen eventually but so far we've been spared that hurt. At church on Sunday she was welcomed into her age-appropriate classroom and really seemed to have fun! And at our small group meeting she played with the other kids and both kids had a great time. The ever-adaptable Ryan even invited himself back over to play!

While I'm learning that I can't force everyone to love my children as much as I do, for now while they're young I feel as though I have the responsibility to guard their hearts. This is made especially challenging with Lauren having Down syndrome. I feel like it's my responsibility to guard BOTH kids from experiencing judgment based on Lauren's special needs. This is a challenging task for any person to take this on, as we can only be accountable for our own actions. But my hope is that for a little while longer I can protect my children from small-mindedness and ignorance as well as the hurt they cause. This is why I have such anxiety regarding change. I am so incredibly thankful that we've been welcomed to our new church and small group with open arms.

 
Thankfully Ryan has actually been agreeing (for the first time ever) to wear a hat outside!

 
Lauren REALLY missed school over Christmas break! As you can tell, she was ecstatic to be back with her friends and teachers!