Sunday morning my daughter woke up puking and complaining that her head hurt… and it brought my emotions, fears and worries from two weeks ago full circle. Two weeks ago, I woke up for church and my husband wasn’t feeling well. My mom sweetly took my kids to church and I stayed home with him so he could get a little more rest. By the end of the day he was throwing up every time he ate or rolled over and I knew I would have to take him into the hospital for them to give him some fluids, and more importantly seizure medications by IV. I wasn’t really surprised when they decided to keep him overnight for observation while giving him fluids, but I was already looking forward to us being back home and in our own bed on Monday.
The staff the first day was amazing. He had an MRI on Monday morning while I ran to the cafeteria to get a bite of food to eat. In the afternoon, OT and PT came and walked with him and immediately went to find a wheelchair, walker, and all the other paraphernalia that I would need to help him get around better when we got back home. They put through an order for a ramp for the house and for a hospital bed and told me that they would love for him to stay an extra day so that they could teach me how to use all these new things. He hadn’t slept much the night before so I told them I thought it would be best if we went back home where he could rest without being agitated.
His parents came in and shortly afterward the doctor came to tell us the MRI results. He said there was significant swelling and they needed to up his steroid immediately. They wanted to keep him one more day since he still wasn’t keeping food down. His dad gave me a ride home to see the kids and then I showered, changed and hurried back to the hospital. Benjamin seemed agitated so I sat on his bed with him holding his hands and talking with him. They still hadn’t given him steroids, or seizure meds and about an hour after I arrived he had a seizure. They hooked him up to oxygen and immediately rushed him to the ICU where they made us wait for almost two hours in the waiting room while getting him situated.
I spent the night next to his bed, holding his hands and talking to him, without him really responding other than the agitated jerking of his hands. Sometime after midnight they finally gave him meds and around 2am, he finally seemed to be resting peacefully. I fell asleep holding his hands and woke up to nurses rushing in at 4am and asking me if he had had a seizure. His snoring sounds which I had thought were normal were him fighting to get air and after giving him oxygen and shocking him multiple times, I moved to the hall watching while they prepared to intubate him. I watched as long as I could before moving to the waiting room and praying while waiting for his parents to arrive.
The nurses came out twice and so did the resident doctor, reassuring me that he was fine and I would be allowed back in soon, but within hours of being allowed back in his room, he stopped breathing and we had to say goodbye. It was the hardest goodbye of my life, and even the hours leading up to it did not prepare me for the fact that the goodbye was coming.
The memories are hard, and I already miss him so much. My heart hurts for myself and for my children and all that we have lost. I feel cheated by not knowing the end was near, or getting the chance to truly say goodbye. And I feel the weight of all the missed opportunities and the pain of such a sudden loss.
I don’t know what went wrong, and how he went from not feeling well on Sunday to being gone on Tuesday; but I have to believe that this was a part of God’s greater plan and continue trusting in the outcome that I cannot see. I know that God is still good, He is still on the throne, and my children and I will come out on the other side of this storm stronger than when we entered it. I ask that when you think of us that you will pray for us, that we would be able to see how wondrous the love of God truly is despite all that is ahead of us!
“May you be able to feel and understand as all God’s children should, how long, how wide, how deep, and how high His love really is.” Ephesians 3:18.
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life