I had a goal…not a lofty one…but a goal nonetheless. My goal was to blog twice a week in 2015. It has been hard to find any time to write since Jake has been born and I missed writing. I was sensing that God still had a purpose for this little blog and I didn’t want to miss out on what He was doing. I was off to a pretty good start and then…well, I’m not even sure how to describe what happened. But it sure seemed like our little life in Kansas began to fall apart. Some days we wondered what in the world was happening, but then God would gently remind us again of His faithfulness. And now we are trying to trust Him day by day with this new part of our story that we were not expecting. That’s how life often works isn’t it? We think we have a pretty good plan of our own but things happen and we find ourselves daily realigning with God’s plan and trusting Him even when we don’t understand.
Let me go back to January…
My brother was here helping me with a little kitchen project. We had a cabinet emptied and pulled of the wall and Joel came home for lunch. Right after lunch he started having extreme pain in his abdomen…like my big, strong husband was on the floor in tears. It kept getting worse. We had no idea what to do so my brother got him to his truck and drove him (really fast) into the ER. Two nights in the hospital and one gallbladder removal surgery later, he was feeling much better. And we were so thankful it was an easy fix. Because when your husband is on the floor in that much pain it makes you a little nervous. Just a little.
This all happened on a Wednesday and we were scheduled to leave on a trip to California to visit my parents the following Wednesday. I was so bummed. I thought for sure we wouldn’t be able to go. But God orchestrated even the details of this little trip. We were sitting in the airport and I found myself taking a deep breath. It had been such a crazy week and this was going to be the perfect way to recover. Thank you God for this gift.
We were planning on spending the whole week on the beach. The sunshine, rest and time as a family was going to be perfect. Friday we were driving back to my parent’s house after spending the afternoon on the beach and I heard a strange choking/gargling sound. I turned around and Griffin had a horrible blank stare on his face and was unresponsive. We weren’t sure what was happening, pulled over and called 911. I never have been as scared as I was when I pulled his little limp body out of his car seat and handed him to Joel. He was having a seizure. We took an ambulance ride to the children’s hospital, Griffin had a clear CT scan (praise the Lord!), and then we headed home…cause of seizure unknown. They told us sometimes kids just have a weird seizure and that’s it.
The next day Griffin seemed back to normal. I think it took us longer to recover…he scared us! We watched him closely, hoped it was just a random seizure, and went on with our vacation. The rest of the week was uneventful and we made it home. Thank goodness!
And then came February…
We followed up with our pediatrician who referred us to a pediatric neurologist. At this point Griffin still seemed pretty normal and then later that same afternoon he started having jerky “falls” that we suspected were related to the California seizure. He had several more “falls” that weekend and so our pediatrician got the neurologist appointment moved up. We were expecting that the doctor would want to do further testing. What we didn’t expect was the urgency. We went straight from that appointment to the PICU. The doctor wanted to monitor the seizures and get testing done as quickly as possible. The last time we went from an appointment straight to the hospital with a child was with Cora. It felt all too familiar and we were scared. Really scared. There was a lot of waiting and a lot of crying out to God over the next few days. Our worst fear was that they would find a tumor causing the seizures. Between the two of us I am sure we told God a million times we couldn’t do cancer again. The struggle to understand how we could possibly have another sick child was big and we were begging Him for normal test results. We were so relieved when we finally heard that the MRI and EEG both read normal. Praise the Lord!! We checked in Tuesday afternoon and got dismissed Thursday evening. Griffin was diagnosed with Atonic seizures (which is a genetic thing since all the tests were normal). As much as we would love for Griffin to not have to deal with epilepsy, we felt so thankful that we weren’t dealing with cancer again. So thankful.
And then began the journey of figuring out what seizure meds and dosages would work for Griffin. It has been a roller coaster for sure. We have had some really hard days and some really great days. I have struggled with that heart racing fear every time I hear a thud or Griffin falls. I wonder what the day is going to hold as I open my eyes each morning. It has reminded me of how I need to rely on God’s manna each day…really, each minute of each day. He is the only One who knows what I need…and He is the only one who can provide for those needs.
Like last Wednesday, almost two weeks after we had been dismissed from the hospital. Griffin had been having a few seizures again and I was in conversation with the nurse about what our next step would be. That evening the neurologist returned my call. That is never a good thing, right? When we had been in the hospital the first time they had taken a urine collection to test specifically for neuroblastoma…because of our family history, no other reason. Well that test had come back with one indicator just barely over the normal range. He wanted Griffin to come back to the hospital to have a full body CT scan to rule out neuroblastoma. I got all the details, hung up the phone and totally lost it. I couldn’t handle even hearing the word neuroblastoma. We went back to the hospital that evening with our sweet Griffin. Twenty four hours later we were getting dismissed after Griffin’s seizures were under control and the news of a NORMAL SCAN!! You can imagine the rejoicing that was going on that evening! It was a day of waiting and waiting and waiting and crying out to God (along with so many others) for our Griffin. I think Joel and I wanted to run and dance out the doors of the hospital that night. And Griffin requested a QT hotdog and drink on the way home. You’d better believe we gave him all the hotdogs he wanted.
With all the tests being normal, ruling out anything that might be causing the seizures, we are back to just an epilepsy diagnosis like I explained before. We are working with the doctor to figure out what meds best work for Griffin. We are still having some really hard days but we are having some really good days mixed in there too. And we have been surrounded by so many friends and family and so much prayer as we figure this all out. We have been overwhelmed by the kindness and love we have felt from so many. We are beyond grateful.
And one more thing…
I struggled knowing how much to share with you all. Part of me wanted to just keep quiet. But let me tell you something. We have seen God work in our family in some pretty incredible ways over the past two months. And we were reminded once again of His faithfulness to us…even on the really dark days…especially on the really dark days. And I just can’t keep quiet about that! So PLEASE don’t feel sorry for us at all. That is not the point of this post. I just felt like I needed to give you a little background so I could share what God has been teaching us throughout these days that I just described. Our life has felt totally crazy. I mean…gallbladder, hospital, seizures…oh my! But this really isn’t about us at all. May God receive all the glory for the great things He has done. And may I be faithful to proclaim His glory to you on this blog.
I can’t promise when…because life has been crazy…but there is more to come!