Phone Call

Daniel had just gotten home from work and we were doing things in the kitchen.  It was a normal Wednesday evening for us and we soon would be having a sitter come so we could go to our Home Group Christmas party at Erin's.  I was walking out of the laundry room and into the kitchen when my phone started ringing.  Daniel had answered my phone and handed it to me.   I looked down at the number but didn't really connect the dots.  (919)-966-....  Looks familiar but not sure who it was.

Hello I said.  Instantly hearing them say...is this Amanda Smith? the dots connected and my heart sank.  I started pacing back and forth by the kitchen table, my arm started shaking and I couldn't stop moving.  Daniel instantly walked over reading on my face that I was about to panic.  He quickly caught on to who was calling and tried to get me to stop moving so we could both position my cell phone in a way that we could hear what the genetic counselor was about to say. 

The words Sally Harris shared with us that day at 5:16 pm on December 14th, 2011 were words I honestly dreaded hearing.  They were words I NEVER wanted to hear spoke over the phone to me in my lifetime.  They were words I had lost sleep over, worried about, prayed about, shared with friends about.

"We got back Colton's genetic results and he does have the same genetic mutation of OI type IV"

I remember we were standing between our table and buffet in our kitchen.  I instantly gave Daniel the phone and just dropped down.  My body seemed to go weak and I couldn't even control the sounds that escaped my mouth.  I cried so loudly and uncontrollably.  I walked right over to Colton and scooped him up out of the pack-n-play where he was sleeping in the living room and held him on the couch.  I just starred at him tears dripping down my face as they fell on him.  I apologized to him over and over and just continued asking and repeating words of "why, NO, I am so so sorry".  I honestly don't remember when Daniel joined me but he graciously finished the conversation with Sally and got the details we needed and sat down on the couch to join me.  We both sat starring at our beautiful boy just crying tears of sadness together.  We cradled him, kissed him, and loved on him.  I just think we were both in shock and disbelief. 

I remember EXACTLY where I was and what I was doing when we got the same phone calls from UNC about Brayden and Teagan.  But both of those times we heard what we wanted to hear from the other end.  We heard "we did not find the same genetic mutation.  Your son does not have OI".  We cried in those moments together as well but they were happy tears.  Tears of relief, happiness, thanking God for what he had done and for answered prayers.

In that moment with Colton I was not thanking God.  I was not crying happy tears.  I was sad. I was grieving.  I was angry.  I was frustrated.  I did not look at OI as a gift or as something I ever wanted for our family.

1 year later today December 14th... I stand here reflecting on this year with our boy.  (well actually I have been reflecting for a few weeks now.  I think it all started around Thanksgiving).  I can't help but cry again today thanking our Lord for the beautiful little man we have been blessed with.  I honestly can say that because of that phone call that day I have been introduced to a whole new world of AMAZING OI families.  They are families and stories I would have never been blessed to know if it wasn't for getting that phone call.  They are families and stories that have CHANGED me and who I am today.  I have not gotten super involved in the OI world just yet but I am a better more compassionate person because of meeting some of these families, learning their stories, and having the opportunity to be praying for them.  Did I want Colton to have OI? Of course not! But 1 year later I can start to see how God has been working through me during this difficult diagnosis this year.  I feel over this year my perspective is changing.  Some days more than others but it IS changing ;)

I am thankful for where Colton is today and for the opportunity to raise such an amazing determined strong little boy.  I thank God for his determination and feisty personality.  I pray that as he grows up we can offer him opportunities to thrive in this world and live life to the fullest without feeling the need to shelter him too much.

Colton - I know God is going to use you in a BIG WAY.  I pray we remember to tell you that daily and we don't hold you back from the BIG PLANS God has in store for you.

CDSA

Well we had our first official visit from the CDSA on Monday October 1st.  I have to say I was a bit nervous and also excited about it all. 

When Dr. Jenny and Ms. Dana showed up they got right to interacting with Colton.  They were doing different assessments, games, specific play, and even sneaking in some loving from him.  He enjoyed playing with their new toys all the while not knowing they were actually testing his receptive and expressive language, his overall communication, fine motor, gross motor, and everything else I am forgetting.  :)  

I enjoyed answering their questions and getting to brag about my boy a bit! He did surprisingly very well without going down for a nap and I was impressed.  

Overall Colton did not show he needed any services just yet from CDSA and hopefully he will not ever.  He scored right on target or close to it for every area.  Most areas he scored like any other average 10 month old little boy and a couple areas he scored more like an 11 month old boy! Way to go C!! They did agree his hips are "loose/lax" and the way he stands could be concerning in the future, but she is going to send a copy to our orthopedist who we will see in just a couple of weeks.  So I plan to discuss those concerns with him during that appointment.

We did enroll him in the program just because he automatically qualifies due to having OI and now I have another resource to contact in case we do we feel we want another professional opinion on how he is doing later on.  Yes we have all our Duke doctors to call on but these assessments are free and even if he needed services someday the copay would be cheaper than what we pay right now for private therapy!

I have to say in talking to a friend about it earlier today and sharing our experience,  I told them overall I was so glad we did it.  It was encouraging to focus on some of the amazing things our little man is doing instead of always just worrying about what he MAY not do and what concerns we DO have.  I was encourage to hear how well they think he is doing overall and just to have a couple of hours focused on him and to see him SHINE! 

Here's to you little guy! We love you lots and are so proud of you!

4 hours...

Do you ever feel like you move through your day without actually seeing the people around you? 

There are days I feel like I have such a long list of things I want to accomplish that I just move through the day without really noticing the people I interact with at Target, the gym, the people in the grocery lines, the random person walking down our street...

Yesterday was kind of one of those days.  We have an incredibly busy next couple of weeks and so my list is long! I dropped our two older boys off at preschool and let me state, I did acknowledge their teachers and and talked to Joye as we walked in.  :)  But after that Colton and I were in GO mode... I had a list and I intended to accomplish it during the 4 hours I had while the boys were gone to preschool!

Post office - check
Target to buy random things on my list - check
Party City to check out things for B's birthday - check
ATM to deposit money - check
Lunch at Moe's with my sweet Colton - check

and the list went on...

Did I accomplish all that was on my to-do list that morning? Well yes we just about did.  I interacted with Colton and sang to him while we shopped.  I practiced waving bye bye with him and giving him "fives".  But I am not really sure I made eye contact with anyone else while I was living life during those 4 hours!

When I stop and think about it...it is not what Jesus would do.  I know Jesus would have stopped and acknowledge the people around him even if they were complete strangers and His list was long.  He would have had intentional conversations and made eye contact with them.  Everyone has a story that you come into contact with everyday and we are called to love them like Christ would love them.  Was I nasty to anyone?  NO! But did I intentionally show them love? NO! 

With God's help... I am going to work on slowing down a bit when conquering my LIST to stop and breath in the world around me.  I want to acknowledge in a deeper way the complete strangers I come into contact with on a daily basis.  I want to call people by name more than I do and recognize their presence. 

Here's to showing God's love in a more intentional way!