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  • Tarah OSullivan


The last month and a half has been so busy. We finished the run for the foundation, prepared for our trip to Florida for the week of two a day hyperbaric treatments, all while continuing neurofeedback training for Drake down in Charleston weekly sometimes biweekly. Drake had doctor appointments (neurology, genetics, optometry, dietician, weekly blood draw for labs, weight checks and medicine adjustments), over the phone consults with labs in Texas trying to negotiate contracts to start gene replacement therapy for NKH here in the states, emails back and forth to researchers in the UK, speaking with a researcher in the states about funding a new mouse model with a specific mutation that affects Drake as well as a good portion of the severely affected children, getting referrals to a new hospital in Atlanta to talk about a cutting edge surgery….. weekly visits from EI, PT, OT, and speech…. finally getting formula from Ireland that we have been working for six months to obtain so we can see if it is relevant in helping guide a nutritional requirement for this disease…. working on the details for getting the at home meter programmed (this is a neat God story to come) so that we can use it and start correlating results…. completely flipping one of the girls’ bedrooms so that we can now make it Drake’s therapy room and have space for the Hyperbaric chamber we are getting delivered (another update on this coming)….. and that is just a month with Drake….. not counting the other three littles or Daddy’s life…

I told Eric the other day that I was struggling… not struggling to find things to do, obviously…but struggling to hear the Lord… I will be very honest here… with all the business and trips, and demands on my time… I started shorting my devotional time.. if I made time for it at all… and then instead of seeking God’s direction… I started making decisions on what I “thought” He would say verses where He was leading me to go… and before I realized… I was hurting and exhausted…and felt so distant from the one person that I longed to hear from….how did this happen and when did I shift?? God never moves so it has to be me shifting to where He is out of focus…

I had to start having a reality check…. How much time had I spent pursuing Him this month?…. What if I spent half the amount of time looking for His direction or His will instead of what research is coming next or what treatment is available?….. now don't get me wrong… I do not feel anything that we are doing with researching or fighting for better treatment is bad or displeasing to the Lord… the bible says very clearly that God helps those who help themselves…. but it was the place these things were taking in my life that was sinful….. See….again brutally honest here…. I have to constantly put Drake’ s healing down at God’s feet…. because if I try to pick it up (which I do)… and Drake has a set back (which he does often)…then IF I start to doubt God’s work and do not COMPLETELY trust that all the things Drake is going through is absolutely needed and part of God’s sovereign plan… than I start to let the pride seep in… I start to get impatient with God..and I start questioning the timing of His plan ..…and my human brain starts to challenge our direction verses allowing my heavenly Father to lay the steps….

So…for weeks now… we just “haven’t”….. we haven’t traveled to Charleston for treatment, we haven't talked of contracts and negotiations for lab fees and clinical trials….we haven't planned fundraisers for Thanksgiving or how to obtain the funds needed for these very large research requirements…. we haven’t been to multiple appointments or slammed our days with therapies…. in place of the time that would have been spent doing these things… we have made it a priority to get back in our daily morning devotionals… digging through scripture and surrounding ourselves with His word…making sure that Saturday night we are in our state so that we can wake to hear His word preached in our home church surrounded by His people, visiting our small group and talking of our struggles and listening to how God has faithful walked some close dear friends through the loss they have experienced, spending more time in prayer… just talking with God… and asking Him to reveal His will for Drake… it dawned on me this week that I have never asked God what HIS WILL is for Drake…isn’t that ironic…. in the beginning I have asked God to show us His direction for very critical decisions we have had to make for Drake.. we have accepted and prayed many times that God’s will be done with Drake… but just this week I started realizing that I needed to spend more time asking God to reveal to me His will for Drake…. I have been asking God to heal Drake … and then putting stipulations in my head of what that healing meant to me…. After feeling so distant this past month with the Lord… it has brought a longing for His eyes to be my eyes… His will to be my will… His healing to be my healing…. because…. I don’t want anything …… even Drake’s healing …. if it cost me my God…..

Today is my birthday….number 32… birthdays were more fun before I hit 30… now I wouldn't mind if we had it ever other year so those candles would quit adding up…. all kidding aside I am very grateful to celebrate birthdays because it is truly a blessing God has given me one more year to enjoy His blessings and my trials… I am thankful for the journey Drake has brought into our life… I am thankful for the refining that has and will continue to happen in my heart… and I am thankful for a God that doesn't turn from us when we disappoint Him but lovingly disciplines us back into His will….

We will updated on the events mentioned earlier with Drake in detail soon…God has been moving mountains and I welcome the opportunity to relive this month and just enjoy seeing God’s hands on every turn even when my eyes have been blinded from it…. I have missed writing… it allows me to reflect and share our journey and how the Lord is always working on our little family…just like He is working on yours if you let Him… thank you all for your prayers… thank you for loving us and walking with us… Pray we always… above all us… even healing… that we pursue God’s will first…

2 Chronicles 16:9

For the eyes of the Lord range throughout the earth to strengthen those whose hearts are fully committed to Him.

Psalms 25:4

Make me to know your ways, O LORD; teach me your paths. Lead me in your truth and teach me, for you are the God of my salvation; for you I wait all the day long.


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