Monday, May 11, 2015

Mother's Day Recap

Hi there!  I hope you had a wonderful Mother's Day! I know I did, I was spoiled and loved and Dave did the dishes AND got Isaiah to bed last night.  WIN.  ;-)

A few weeks ago my friend Pam asked me to speak at her church for Mother's Day to give my testimony.  I appreciated being asked, briefly spoke to Dave about it, and said yes before I could talk myself out of it.  Anyone that knows me knows I can talk and talk and talk...but to talk in front of a Church congregation of adults?  I was shaking in my sandals.  

I was questioning every detail.  I was raised Catholic and I have never heard of giving a testimony.  I wasn't sure what it meant.  But after a stint of writer's block, I wrote two pages of what I considered my testimony and gathered some pictures.

Yesterday morning, we arrived at Akron Church of the Brethren and were greeted by Pam, Steve, and Pastor Tom.

Everyone was so welcoming, and you guys, it was a sea of yellow! Pastor Tom asked his entire congregation to wear yellow and so many did!  They also had yellow flowers, a yellow tablecloth, and even the bulletin and music programs were in yellow!  How awesome is that?

Below is my testimony.  I didn't think to record it so you can read most of it instead. :)


I’ve been home with Isaiah now for almost two years, and they are years that I wasn’t sure I’d always have.  When we were pregnant, we went to our 20 week ultrasound and found out that things weren’t typical for our son, that his condition could be lethal, and in the weeks that followed we found out that he had Osteogenesis Imperfecta or OI for short.  

OI is a collagen disorder that affects a person’s entire body, but is mostly known for the fact that it causes the bones to be brittle.  We knew because we could clearly see many fractures right there on the ultrasound, and our son measured smaller than he should have at his gestational age.  OI is a spectrum disorder, which means that each individual case varies; Isaiah’s case is severe.  Doctors weren’t sure if Isaiah would survive birth.

My vision of what motherhood would be was wiped clean.  My expectations changed dramatically over the rest of my pregnancy and honestly continue to now.  Back then I was just determined for Isaiah to live.

Both my husband and I were very positive but I know we both had some harder moments…it’s easy for them to creep up on you when the word lethal is used to describe your unborn baby’s condition.  Mine were always in the car or in the shower where I’d repeatedly ask God to please let me keep him.  I promised God that I’d take such good care of him, and I’m grateful everyday that my prayers were answered.

Nowadays, I’m determined to see Isaiah move independently, whether it’s using his legs or using a tool like a wheelchair.

Isaiah has faced challenges.  

He has had so many fractures that we just don’t count.  He went into respiratory failure at one month old and had a c-pap machine and oxygen on 24/7 for his first 5 months.  He ate through a tube called an NG tube that went through his nose down to his belly because he breathed so quickly that if he drank his milk by mouth he would choke.  He developed hydrocephalus, which is when spinal fluid backs up into the head, and has had two surgeries already in his life and we expect more.

It would be extremely easy for me to complain and feel sorry for Isaiah and even for myself.   I mean, this is not what I envisioned when I first found out we were pregnant, but instead, most days I choose not to focus on anger, sadness, or fear.  We, as a family, choose joy. 

Selfishly, I think of all of the things that Isaiah has taught me, or what having Isaiah in my life has taught me. 

Thanks to Isaiah, I have learned so much about the medical world.   I can say words like tachcypneic and Pamidronate and I even know what they mean!  I know how to splint a broken arm and I can place an NG/feeding tube but I preferred to let my husband handle that task when it was needed.

I often see the positives in life.

Isaiah is almost 21 months old and wears 3-6 month clothing.  We can see him in every adorable outfit repeatedly.  Think of all the money we’d save if I’d stop buying new clothes!

We had night nursing at our home while Isaiah was on his c-pap.  Dave and I slept through most nights until Isaiah was drinking from a bottle at 5 months.  I feel like I should apologize to every mom and dad in here for that perk…because that was a serious perk!

Some days are hard.  It can be a challenge to go out in public as Isaiah tends to catch other people’s attention.  A little guy rolling through Target singing the Muppets song Mahna Mahna will do that though.

But sometimes it’s hard because of how our life is perceived by others. One of the toughest things for me is when people say “I’m so sorry” in response to my telling them about Isaiah’s OI. 

I understand it, but I can’t help but think please don’t feel pity for us.  We don’t; we feel lucky.  We were told Isaiah may not be here; that his condition was lethal, that he was incompatible with life.  When I think back on when we were planning on his birth and were recommended to have some basic plans set up for a funeral?    

Here we are, with a son who is defying odds and predictions, smiling and laughing, and full of so much love and happiness.  

We choose joy.

I have watched my son fight through challenges and feel pride for his accomplishments, and I imagine every mom here today knows that warm-hearted feeling when your baby masters something that once seemed impossible.

I get to sing Itsy Bitsy Spider.  I have Little Blue Truck memorized thanks to repeated readings… I didn’t know if I’d get to do those things with Isaiah.  I am so grateful that I can.

Isaiah is our greatest gift from God and we will continue to choose joy throughout our lives, despite fractures and set backs…and I hope that whatever challenges are in front of you or your family, that you choose joy too.  Life is so much better when it’s lived with happiness.


Thank you, Pam, for inviting us to your Church.  Thank you for letting me share my testimony, our story, with you.  Thank you to everyone at the Akron Church of the Brethren for welcoming us with such open arms and the generosity you showed us.

We feel blessed, lucky, and joyous.

Be on the look out for a post about Isaiah turning 21 months (that's today! but I'm not ready haha) this week. :)

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