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  • Tarah OSullivan

The Unknown

Drake, very poorly, living with NKH.

Drake is fighting a virus right now. He started Wednesday with a slight fever, yet his seizures have been very calm. Sadly over all, he has been very out of it. We woke yesterday and his fever had broken, or so we thought, and we decided to slip away to the mountains for the day. Before Drake, I would have never taken the kids on a road trip, even with a hint of sickness lurking around the house. But we all needed to get out into the fresh air. Living with sickness is like constantly being surrounded by gray smog. It can be so heavy and hard to breathe. We needed to be deep in God’s creation.…we needed to be away…making memories together as a family.

Drake’s month has been extremely hard. He has went from one extreme to the complete opposite all in a few days time. This is probably the longest span of “sickness” he has had since he was born. Drake has gone through hard weekends… extremely hard days of seizing every five minutes and sleepless nights… for days we would all give everything we had to keep him at home and out of the hospital. Soon, we would get our labs back and medicines adjusted, and he would settle within a few days of his body adjusting to the new doses. He would normally get his feet back under him, and then we would have about four to five weeks of calm to make gains and restore what had been lost from the fall. This past month, we haven’t had that…it has been four long weeks of extreme seizures, throwing up almost five to ten times a day and night, and a very lethargic Drake. We had one sweet day with him on Sunday where it was the first time we saw his precious eyes be clear, and you could SEE Drake was still in there. Wednesday he started with the lethargy and the fever entailed soon after.

I can’t explain how hard this month has been, both physically and mentally. The physical aspect we are used to… our bodies will function at whatever level we make them. Yes, we are most of the time physically exhausted, but talk to any marathon runner, and they will tell you they can push their body to remarkable limits…it is keeping your mind right that is the key to finishing a race. For us, for me…that is the hardest part. Keeping my mind guarded from all the things the devil wants me to see and to feel.

We pushed and went to the mountains yesterday. We loaded up a small picnic, lots of medicines for Drake, and picked a place with minimal hiking. We all needed to be together, away from the distractions, and away from this hard month. It was beautiful watching the waterfall and the kids play in the mountain air. Drake got to see the mountains for the first time as well. He has been to the ocean, and now he has felt the fresh cool air of the mountains.

There is so many things that we want to show him…. so many beautiful places God has created…. it hurts to know his time is so limited and so full of sickness. I want so badly for him to run and splash in the creek with his siblings. I found myself fighting back tears yesterday, as I held his broken little body close to mine, as we were wrapped in a thousand layers trying to make sure he didn’t get chilled. I was silently pleading with God to heal our son… I am his mother…I want him to heal…I want this to stop, Father…Please… stop this for our boy…take the breath from my lungs…..not his……

But….as I watched the massive waterfall crashing over the rocks…

He reminded me…. I am God my child…. and although you don’t understand…. you will one day. But for now… you have to trust me….trust me that I will make all things beautiful in their time.

I have now realized that the one thing I never really liked (writing…I was a math person) is now the thing that brings such peace. Writing down our life and finding the words to relay this journey with Drake, has been the most tedious, yet most enriching thing I can do for myself. Knowing that our family’s struggles have brought encouragement to even one person gives our suffering purpose. And I think that is what we all want…. just to know that we have allowed God to use our struggles for His glory.

Thank you for walking with us on this road…. Thank you for praying for our family, Drake, and our other three littles. Thank you for loving us these past two weeks with tremendous out pouring of help for Drake’s run (updates on this very soon), food for our family so we didn’t have to worry about dinners, and love beyond words. Even when you gave us a sweet hug to remind us we are still human and need that embrace. I never thought our life would be this challenging, yet so rewarding. God has shown us HIs mercy through His people, and we can not thank you all enough. To God be the Glory…


Eric and Tarah, little and Drake

Ecclesiastes 3:11-13

He has made everything beautiful in its time. Also, he has put eternity into the human heart, yet no one can fathom what God has done from beginning to the end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil — this is the gift of God.

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