Twin Cities Mom Collective

A Chronically Ill Parenting Partner

A Chronically Ill Parenting Partner | Twin Cities Mom CollectiveI knew my husband had an autoimmune disease before we got married. When we said “until death do you part” for our vows, I knew that also meant for his disease. It would be a part of our lives forever. But love is love and I wasn’t going to let something that was not in his control, control our life and deny the true love that we share.

Fast forward three kids later and – no surprise – his illness is still here, ready to rear its ugly head at the most inconvenient times. My husband would say it really controls my life mentally and emotionally more than it does him physically. I can’t help it though. I am naturally a worrier and am a seasoned planner of all things. I suppose he is just used to his body being so unpredictable, and is able to go with the flow. And while I wish I could do the same, life with kids makes that so hard. I honestly pray for no flow and for things to remain constant. I find peace in constant. The days, months and years that pass and his disease hasn’t progressed lightens my load emotionally. We can live in the moments in between his “sick days.”

My kids know their dad has an autoimmune disease. Things can happen a little different at our house when daddy is not feeling well. It may mean missed events, being late for things, calling grandma or grandpa to come over and help with the kids while I am at work, or our oldest child watching over his younger brothers when dad needs extra help. My kids have been bummed out because of his disease. My oldest son is luckily a very responsible and mature 9 year old who has been that way since he was born, so he has been a blessing for his younger brothers when dad needs his help when he’s not feeling well. Our life can pretty much come to a standstill without a moment’s notice. And as a family, we have learned to adapt to this change pretty easily.

I also know that I may be a single parent at unexpected times. Plans cancelled, trying to find someone to help, taking my kids to things I didn’t plan on, and trying to get off of work because we don’t have daycare.

A major moment in our life happened when he got shingles in his eye, as his medication for his autoimmune disease lowered his immune system. We had also just had a baby who was born with special needs, and couldn’t be vaccinated against the chicken pox yet. My husband had to go live at his parents’ house for two weeks while he recovered so our new baby wouldn’t get sick. Those weeks were probably the hardest so far in so many ways, and yet I know there’s a good chance they will not be our last.

So, how do I cope?

Honestly, I don’t cope so much as I just keep trekking through. I feel like I am walking a tight rope on a daily basis and just pray that I can stay on that rope. I have to be ready for anything. What helps me stay on is my faith and thankfulness.  I am extremely thankful for modern medicine and the health insurance we have. Without those, I doubt my husband would be here, having succumbed to his disease before we even met. Which means my sons would not be here. I am thankful for family, who is always willing to help us when we need it because they understand. I am thankful that I have really great kids that understand as well. It is all they have known. Letting your kids down and seeing the disappointment in their faces never gets easier, but I know down the line their disappointment will transform into compassion in their hearts. And not just for their dad, but for other people or situations that are different or are not ideal. I hold onto the faith that their experiences will shape them in a positive way as they will continue to be kind and loving adults.

So while my husband didn’t choose to have an autoimmune disease, he did choose me. And I, in turn, chose him. You see, it’s actually quite simple. There is no one else in this world for me, and while he’ll always have this disease it does not define him or our marriage. Because love always wins.

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