Part 3: Our Life Now

 In Behind the Scenes

Within a month of being on the cancellation list at Albany Med there was an opening for my husband to be in observation. He got the call soon after arriving at work wondering if he could be at the hospital by 10am. I packed quickly, his manager gave the approval for an undetermined amount of leave and we were on our way. Ten days of observation to confirm the diagnosis of left temporal epilepsy, months of additional testing and screening and finally brain surgery was an option. We were so hopeful this would be the answer and excited for this opportunity that previous doctors had insisted wouldn’t work.

Finally the day arrived – first the surgeon implanted some grids directly onto my husband’s brain where the activity was originating from. Then they removed him from his meds, waited for seizures to pinpoint the problem area, put him back onto the meds, put him through several more tests that completely wore him out and then it was time to remove the problem area. Except the problem was the seizures were originating in Wernicke’s area – which controls speech and cannot be removed. In the hopes to at least disrupt the paths they did remove what they could. We can now say my husband has a hole in the head, he’s got a few loose screws and he’s lost a few marbles.

What about business? Life goes on. I spent every minute I could with my husband while he was in the hospital, delivered and set up balloons in the mornings and kept up with the partying on the weekend. We celebrated my daughter’s 16th birthday in the hospital and took some time to get her Driver’s permit. It’s been 18 months since he had his double brain surgery.

What is life like now? well – within a year of the surgery he lost his job that he had worked faithfully at for years. When we tried to slowly decrease the meds the partial complexes came back and it took time to find the right dose. So far it’s ended up being no change in meds. At the beginning there were a lot of migraine headaches and with med changes come mood swings. The DMV now requires an annual physicians report for him and he ended up losing his license temporarily. With the loss of a stable job it became necessary for me to become his driver. As a licensed auto appraiser this has made things difficult for us. My husband has been very blessed to work for a couple companies independently with family (lots of times it’s me) driving him around the capital district to look at vehicles. It’s not the cup of tea I would have picked out but it’s life for us. It’s nice having a companion when I’m delivering balloons and it’s a good thing we like each other most days because we spend hours of time in the car together and work from home together too. He’s my sidekick when we are putting up arches and makes sure I don’t have to drag heavy weights around. There’s been a few interviews but without a license he just doesn’t meet the job requirements of being an estimator at a shop.

How do I feel about living with someone with epilepsy? Life is an adventure. But don’t we all have some kind of adventure? Everyone has drama and there’s always someone else that is going through more. I can be thankful that hopefully the surgery will allow my husband to remain on the meds he’s on and he will stay stable and in a few more months be able to drive again. At times when life looks impossible I change my viewpoint and focus on all the blessings we have. I’m thankful to have my husband by my side as we grow and expand. When you buy balloons from Upstate Balloon Company not only are you buying locally from a woman owned business but you are also helping to support a family that struggles with the realities of epilepsy and enabling us to help others in need of help. As we grow we will be reaching out to ARC, City Mission and similar programs to see how we can help provide jobs to those in need. Share our story to encourage someone else and visit us at upstateballooncompany.com. We look forward to bringing fun, color and smiles to all your favorite people in the capital district.

 

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