Living With Chronic Illness: CIDP and the Larsons

Last year I posted about how my husband was in hospital and we were unsure of what was wrong with him. Everything felt dark and uncertain and we desperately awaited answers. After about two weeks of being there, he had been tested and diagnosed with Guillan Barre Syndrome and had been treated with immunogloblin. He came out of hospital much better and we hoped it would be the end of it.

Months later, he relapsed.

Back in hospital he was treated again and told he had a form of GBS called CIDP, chronic inflammatory demyelination neuropathy. Very rare. The treatment this time did not improve his condition very much and he has been home, unable to work.

It has only been about 6 weeks, and he has relapsed again. He is going back to hospital tonight.

It doesn’t get easier. The worries, the missing each other, the heaviness that sits on our hearts because there is still a lot of questions left unanswered.

I have been thinking a lot about the importance of a family unit. Anyone who is going through a trial is not alone. They are not carrying the burden on their own, we carry it together so that it is lighter. There are lessons for all of us to learn, not just him.

I also believe it is a test of compassion for those around us. To not speak in a manner that is unkind. We cannot say, “it can’t be THAT bad.” Our hearts should be soft and our arms open. We are all at different places in our life, but I think we feel the same things. And those feelings should promote words of encouragement, kindness, and hope.

I believe God has a plan for all of us. In the present we may not understand, but looking in hindsight in my own life I see how it had to be that way. I better understand His wisdom and thank Him for His hand in my life. He knows us better than we know ourselves. We need to keep faith.

I cannot help but wonder “why now?”  When the kids are so little and my situation is what it is, and he is so young. Why could it not be something that came and went and became a memory, not a way of life, like a broken bone? And will I ever get used to this?  But I need to stop thinking that way.

Months ago I sat in a class at Church and part of the lesson was about things that discourage us and how we can change it. One word came to my mind: acceptance. If we are willing to accept our trials and endure them well, I believe we will be blessed. But accepting it can be the biggest obstacle! We may become angry that our life is not another way and we let frustration eat away our happiness. We might think the grass is greener on the other side, only to realise it was just as beautiful, if not more, right where we were.

There may be blessings in disguise. I love my husband being home all the time. I love cooking for him. I love watching him spend time with the kids. I love the little traditions that he has started, like a book after lunch. Ethan now lets us read to him- finally! Our home life has been dramatically changed for the better with his constant presence.

I am dreading his absence this upcoming week. I want to press the fast forward button and have him done with his treatment and be home already. I am grateful to everyone who prays for us and who has helped us in numerous ways.

I am counting all my blessings and holding onto faith. x


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