The Drake Rayden Foundation, was founded by Eric and Tarah O'Sullivan, to bring hope through the gospel, raise awareness and funds for better treatment for Drake, and all children, affected by NKH. 

© 2017 by Drake Rayden Foundation.

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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

July 1, 2019

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First Birthday and Hour Glasses

October 15, 2017

 

  Drake turned one two days ago…. it really is hard to believe…. I normal do a huge first birthday for our children just because I love birthdays and the first one just seems super sweet….  Drake’s day was precious and although we didn’t do the traditional birthday “party” we did get to celebrate him on Saturday during the run we organized to raise awareness and funds for our disease, NKH.  I was very thankful the run was happening so close to Drake’s birthday, because our house has been busy with excitement and weeks of planning.  Honestly, I have had my guard up for a few weeks now preparing myself for all the emotions that might hit me.  I wasn’t sure how to gauge myself with this being a day we thought we would never see.  

 

  God has blessed us with 12 whole months with our perfectly imperfect baby and for that we are eternally grateful.  Drake’s days are hard, some days blurry from all the emotional and physical strains….but we have chosen to cling to the good and embrace the bad because these days are Drake’s days and when they finish….they are gone.  I think the thing I have dreaded about letting myself fully embrace his first birthday is just the reminder that his days are numbered…..  For Drake, unless God’s sovereign hand moves, Drake’s story is that of an hour glass instead of a new page written in a blank book….  Our last year that has passed is one we were extremely lucky to have….. but I have to fight the urge to not feel like it is removing one of the pillars underneath Drake’s fragile little structure. 

 

   You see, Drake’s disease is progressive…. every week, month, year that passes is another pillar removed…until the inevitable happens and our structure falls and it is God’s time to call Drake home. Some children with Drake’s severity live 7 years….some only make it 3….To know your days are number is one thing….but to actually see those numbers brings a whole new spectrum to the table…. Some nights when my brain hurts from all the research and I let my spirit be bruised from another doctor telling me to “familiarize myself with what Drake’s future holds and how things will end”…. I pray…..sometimes before I know it…hours have passed…. my prayers are a bit different now though…. I still talk with God and beg for healing for Drake, I pray for us to never allow the doctors “will nots, can nots, give up now” speeches to ever starve our desire to push for better treatment for Drake…. but I find myself praying to never forget this time either…. Drake has brought such a richness into our lives and if we “assume” this is what people do in a situation like ours than I fear we rob God His glory…. 

 

  Over the past year God has brought people into our lives and they have loved us unconditionally.  They have physical and emotionally carried our burdens for no other reason than they knew we were hurting and they wanted to help…. I have cried with many strangers who wept along side of us because some days this journey is just “unfair”….. we have received hand made prayer blankets, and weekly cards with scripture to remind us that God’s word is true and just…. we have seen God rally an army of supporters to help us raise money and work events to get Drake to that next level of research and experimental treatment that just might be the break through we need….. God never promised ease but He promised us when the road got tough….He is enough….

 

  I opened my Facebook on Drake’s birthday and the “one year memory” hit me harder than I expected…. I saw these beautiful pictures of Drake’s birth and the excitement in our families’ eyes holding him for the first time….  I looked at the pictures of Eric and myself and I cried, because we had no idea what was about to hit us….. in three short days our family was about to be hit by a mack truck that would leave us very different and forever changed….  I cried thinking about the mix of pain and hope I see in people’s eyes when they look at our family now…. I think with Drake’s story you see a baby suffer terribly daily but you also see a God who still reigns…. 

 

  Before birthdays have always seemed effortless, the days were a gift but the years were endless… Drake has taught our family so much…. some lessons on suffering I wish I had never experienced but I am thankful God chose us…. There is a quite submission in my heart now and a desire to follow Him at all cost…. a dependance that I don’t think I would have ever known before Drake…. 

 

  Happy Birthday our brave, strong, warrior….. you will change the world…. you have already changed ours…..  

 

  

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