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  • Tarah OSullivan

Why Not Me?

Thanksgiving was this past week and like many of you, we are still recovering from all the wonderful food. This time of year is so fun as we know that certain dishes are only made close to the holidays. The kids and I enjoy dusting off grandmother’s recipes, and preparing our dishes to take to different family’s houses. This year we even did a friend’s giving on Thanksgiving day. It was such a sweet time to end our day with precious friends and enjoy laughter while sharing about our different family traditions.

The past six months have been so much about…. healing.

Healing while suffering is something I am still trying to find words for.

We had to leave one of our family dinners Saturday as Vivian had taken an unexpected turn. She had a great day that morning, but her little body started seizing, without warning, about every 5-7 minutes. Eric and I had not planned for this kind of attack as she had been so calm earlier in the day.

Eric stood his post right beside her stroller as I tried to set out the food and watch over the bigs. Our family is always so supportive trying to help in anyway they can. We know the kind of helpless they feel as they have to watch her body twist and contort from the pulling of her muscles. These seizures were hard enough to cause her to vomit, so we all were taking turns running to get paper towels.

In these moments it is hard to explain all the emotions….

Eric and I are trying to watch every breath and monitor her recovery after each seizure. Her skin color is changing which is normally from the intense physical challenges each seizure brings. We know that blueish to purple means oxygen deprivation and yellowish, to greenish skin hues mean we may be seeing something significant happening with her liver.

As we continued to try to gauge what was causing the seizures, Vivian’s little body became more weak and more lethargic with each passing minute. We had spent all day getting the food prepared, the meds ready and everyone packed to make the hour drive. We had only been there maybe 10 mins before the seizures started.

After about 30-45 mins we knew what we needed to do. With no warning, we had left the house without bringing her oxygen or a pulse ox machine to give us indication of how shallow her breathing might get. With seizures hitting her this quickly we only had a few hours before she would be too weak to facilitate healthy oxygen exchange. Her seizures have no medicine to give as that is the stuff your funding is continuing to help us set in motion with our research partners.

Eric and I made the call…and the endeavor to load all the kiddos and our now seizing baby girl back in the car…began….

Although our sweet bigs have always been so understanding, we hate to have to make the call to cancel the night. They never complain, they want what is best for their siblings, but I have to admit it stings to have to take an experience from them.

We said our hurried good-byes, and loaded up, and about 15 minutes into our drive home we noticed her seizures started to slow…. After we got her home and her pulse ox on her little toe…there was only one more seizure for the rest of the night.

Her body will take days of sleeping to recover from what she went through and honestly we have no idea why it happened. NKH never plays fair….and once you think you are ahead, it reminds you quickly how critical your babies are.

I sat in church the next morning listening to our pastor preach. Eric had stayed home with D, V, and our oldest son (our son comforted me saying they were going to do “Man stuff Mommy”), while the girls and I went to serve. We love serving our sweet kiddos in Sunday school worship each week. Short of being in the hospital or out of town, we do our best to keep our commitment which some weeks, divides our forces to take care of everyone’s needs.

As I listened to Father’s words being preached my mind kept drifting off a bit….

Why not me…..

In the beginning of this journey those words would have been very different. “Why me Lord?”, would have been more of the questions I would ask Father as to why our cup was so heavy. Now as I sat and looked at our sanctuary full of good, God fearing people, people who love and submit their lives to a Heavenly Father for wisdom and guidance…

the argument kept coming to my mind…

Why not us, Lord…

I used to want to believe that God’s chosen people, His followers needed to be protected… we are His people, His children, His beloved…. The church needs to be protected from all the suffering, the pain, the disease….

But as I looked at all these amazing humans in one place all I could think was … Christ followers are the best example of suffering. We suffer with hope…not hopelessly. We suffer knowing we are not alone and that our suffering, no matter how dark or how long, is not without purpose. What better group of people to show a dying world hope than a suffering Christ follower?

We are His chosen, His beloved and yet He still asks us to walk through the hard. He still requires suffering of us all just as He did His only son.

Over this journey with Drake and Vivian Eric and I have been confronted by good, honest people wrestling with hard questions and crushing emotions… Sadly too many times we have spoken with broken hearts as they admitted they turned from God due to the sickness they were watching their child walk through. My heart aches as I know their hurting and I know how easy it would be to turn to anger to deal with the pain that comes from watching someone you love suffer…. Praying for healing while having to sit in the waiting and the pain is unbearable.

But ask yourself….why not me?

Why wouldn’t the God of the universe use me to suffer for His glory if He sees fit… Why would I not trust and believe that my submission and laying down my wants is part of the God ordained life my Creator intimately planned for my good? Why not let the hurt and the pain have its full effect so that when you find yourself numb to the sting that used to bleed you dry that you look to your heavenly Father with hope that you are beginning to weather the storm well. In hope that one day you will hear..well done my good and faithful child.

Vivian is quickly getting back to her baseline. She was surprisingly up and taking her bottle staring at us with her big beautiful blue eyes. All our hearts can beat a little easier now that the illusive threat has unknowingly moved from our doorstep yet again.

All we know is that all of this is not just for Eric and I to grow closer to Father’s love. God loves Eric and I and our children very much but this story is not for our glory but for His. And that is the task He has given us… to continue to put words to paper so that if we can help fight back the darkness for one person through the children’s journey, than we trust Father that was the one person we were meant to serve today.

Suffering is never without purpose unless you turn from the Lord….

then you are suffering alone….

Don’t go this alone….Jesus is right there with you…all you have to do is look up. He loves you and will never leave you. Only you can walk away from Him…but don’t. Hold onto Him..

He wants to go through this with you.

….He is enough.

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The images and writing are owned by the Drake Rayden Foundation.


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