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To My Husband, Who Didn't Expect My Illness on Our Wedding Day

To my husband,

We have had a wild journey together, sometimes arduous, sometimes jubilant, sometimes so pure and beautiful, sometimes downright painful. Tomorrow, it will be our sixth wedding anniversary (although we have known each other for 12 years). I doubt you pictured our life as it is now on that day you said “I do.” I’m sure you saw a future of children running around our feet, accomplishing big things, seeing beautiful places, working hard so that we could want for nothing, heck maybe even me whipping you into shape so that I could drag you up mountains with me.

That vision of our future you may have had on our wedding day has not quite come to pass. On another very important day, the day of our first and only child’s birth, illness took that future and replaced it with another. That day produced a new future in which your wife and child are both permanently ill and disabled. Sometimes I forget how much this life is yours just as much as mine. I shamefully admit sometimes I think it is not as painful or as difficult for you, because you are not the one who is ill. I know it is difficult for you as well, though. It is difficult to worry about your child with special needs. It is difficult to see the woman you love suffering. It is difficult to know that neither your son nor I may ever get better, and that you will likely outlive me. I can only imagine how it must have felt near our son’s birth when you were told that you may lose us both.

So, for our anniversary, I would like to thank you for some of the things you’ve done that you didn’t expect on our wedding day.

Thank you for driving our son and me hundreds of miles a week and sitting through an average of eight to 10 appointments a week so we may receive the care we need.

Thank you for strategically pulling over on the freeway so that I don’t throw up on the car. And washing the car, and the plethora of other inconvenient places, when I do.

Thank you for carrying me to the toilet, dressing me and bathing me countless times when I’ve been too sick to do it myself.

Thank you for doing the heavy lifting in our son’s care — including most of the diaper changes — and protecting me when you can from his aggressive meltdowns.

Thank you for resigning your life to poverty so that I can get the medications (which are many, many thousands of dollars per month) and healthcare I need.

Thank you for being a 24/7 caregiver to two people.

Thank you for doing everything differently, often without a word, so it can be adapted for our entire family to enjoy.

Thank you for listening to my constant, and sometimes irrational, worries and anxieties.

Thank you for holding my hand when the pain is too great.

Thank you for teaching me that family, and relationships in general, can be really meaningful.

Thank you for caring for our child by yourself when I need to rest, even when I don’t want to rest.

Thank you for picking me up off the ground the countess times I have fallen.

Thank you for the healing laughter in that magical time between child bedtime and parent bedtime.

Thank you for encouraging me to do the things I love more than anyone in my life ever has.

Thank you for being by my side, holding me, and crying buckets of tears with me when they told us my chances of living through my pregnancy were not good and our son’s nearly impossible.

Thank you for reminding me that I am human, not superhuman (yet).

Thanks for laughing at my jokes and for the general silliness that is what holds us together.

Thank you for teaching me a lot about myself and how to be vulnerable.

Thank you for trying to keep me present and trying to make the best of “now,” instead of worrying about the future of worsening illness or even a shorter lifespan.

Thank you for dragging my wheelchair and me through terrible, horrible, no-good terrain just so I can see the things I long to see and to rest my heart, which was accustomed to exploring from the tops of mountains to the bottom of estuaries.

Thank you for particularly dragging my wheelchair through the mud for over four hours (which would have taken a person on foot about 30 to 45 minutes to walk leisurely) around the tulip field that we were married in, just because it has such a symbolic meaning to our marriage.  

Thank you for being my partner in raising an incredible little boy with special needs.

Thanks for being here with me, where it is difficult and painful and I am often in “survival mode,” instead of deciding that the easier path is the better path. It takes strength to endure chronic illness, but there is no choice other than to do so. It takes a special kind of strength to be witness to chronic illness and choose to do so.

eight photos of a couple in tulip field
Tristen and her husband throughout their marriage.

I’m sure there is so much more I am forgetting here, but I hope this is enough to show you that I see all the wonderful things you do, even in the moments that I feel too miserable to find it in me to tell you. I’m glad to have had you in my life through all the twists we have come upon in our journey, and I’d love to have you by my side for all of the crazy twists in the future.

Love, your wife with chronic illness

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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