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.
This brought me to tears. God is working in you and your family in beautifully challenging ways. Thank you for sharing the tension, heartbreak, process, joy and anticipation for what is to come. I love you guys!
I love this! Thanks for sharing with us. Praising God for Colton's health and development, and an extraordinary first year!
I will never forget that night at Erin's house, and I'm glad that we were able to be there to support you guys. I am so very thankful that Colton has had an awesome first year and that he has been healthy. He's lucky to have such loving parents and I'm thankful that his OI diagnosis has allowed a change in perspective for you this year. Here's to many more wonderful years with your precious little boy! Love you lots!
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