Owen’s seizures are back. We’ve been working with the neurologist, and are currently increasing the dosage of Onfi–an anti-epileptic drug that he takes. If the increase doesn’t work, we’ll be back to trialing different drugs looking for the combination that works best. In the meantime, Owen is having several seizures a day, sometimes falling and hurting himself because of them.
He is extremely tired, thanks to the Onfi. I don’t mind him being tired at night (actually I prefer it!), but during the day, it’s hard to see him so worn out. With all of the seizures and his other medical problems, Owen has endured much pain in his short life.
|Not the most recent picture, but an example of the type of injury Owen’s drop seizures can bring. This one was from the coffee table…|
As a parent, it’s really hard to see my little boy suffering so much. In fact, if it weren’t for my belief in the Lord and the strength He provides, I don’t think I would be able to be even partially sane any more. So how do I cope when Owen suffers? Here are five things that keep me going…
The Lord is the master physician and the great healer. I know that He CAN heal Owen, or at least ease his pain. I pray for the doctors to have wisdom. I pray for Bryan and I to have wisdom. Owen’s pain can be such a mystery at times, it’s hard to always know when to go get him checked out and when it’s just typical childhood pain like teething (despite his high pain tolerance, Owen is extremely sensitive in the mouth).
I know that the Lord is in control, and can trust in His timing. But giving my cares to the Lord helps tremendously to be able to function when there is suffering.
2. Know that the Lord doesn’t make mistakes
This is a big one. We know that Owen is here for a reason. We’ve learned so much because of him. Our faith has grown stronger. Our marriage has been strongly forged. Our kids have learned to be patient and understanding. Owen is a blessing. And we love him.
We often sing the hymn, “Rejoice in the Lord” by Ron Hamilton. It was one of the first hymns we memorized when we started learning them. The first line has kept our family going many times: “God never moves without purpose or plan…”
We know that God has a plan for everyone. Including Owen. God knows what He is doing. And we can trust what the Bible says in Romans. Everything will work out for our good. Maybe we’ll be able to comfort another parent someday. Maybe we’ll be able to witness to a doctor and show him/her the life changing power of Jesus Christ. We don’t know. But we trust in the fact that God doesn’t make mistakes.
Someday Owen will be called home to glory where he’ll receive eternal rest. Until then, he is here for God’s perfect purpose.
3. Offering Comfort
Often there is nothing I can actually to help Owen. When Owen seizes, we just have to stand back and watch it happen. Of course we make sure the area is as clear as possible, and administer his emergency med if it occurs for a long period of time. But, afterwards, we can scoop Owen up and snuggle. We can fold out the couch bed and watch a movie (one of his favorite activities). We can bandage any wounds he got from falling, and seek any attention he might need. But mostly we just spend time with him.
It doesn’t feel like much, but I know that it is helping. He is much calmer when he’s surrounded by those he loves. On bad days for Owen, our schedule often goes out the window. We do the bare minimum to survive, and work on building fun family memories of togetherness. Owen knowing that he is loved is much more important than a clean floor.
Owen loves water. A warm bath can bring him much comfort. As can playing familiar games on his iPad. It’s important to know what you child enjoys so you can help take their mind off of the troubles. The iPad has been especially useful in the hospital setting when there’s not much to do. It’s helped Owen through EEG prep (lots of wires on the head), and x-ray prep.
4. Remember to take care of yourself
In order to help your child, you have to remember to eat and sleep. You are no good to anyone if you are harming yourself by not taking care of your most basic needs. Nap together. Take shifts with your spouse or other friend/family member. Have a nurse sit with your child while you run to the cafeteria. A long shower can sometimes make all the difference in the world when it comes to outlook on life. You might need to be creative, but do what you can to make it happen!
5. Focus on the positive & Create positive moments
If I only think about what is happening with Owen, it can be overwhelming. I try to stay positive and upbeat–if not for myself than for the other children. Having a sibling going through trials must be hard, so I remind myself that they are also struggling. We spend time together counting our blessings.
Take a few minutes to watch the sunrise (or set). Smell the flowers. Make cookies. Give or receive a warm hug. The small, positive moments help everyone. Bring as many as you can into life.
Watching your child suffer is perhaps one of the hardest things we’ll ever have to endure as parents. What strategies help you get through the rough times?