Tiny Salutations

Tiny Salutations

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Thursday, April 21, 2016

A letter to my husband, from your wife with chronic illness

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 about 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 that 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 that sometimes I think that it is not as painful or as difficult for you, because you are not the one who is ill. I know that it is difficult for you as well though.  It is difficult to worry about your special needs child. 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 out live 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 that you have 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 8-10 appointments a week, so that we may receive the care we need.

Thank you for attempting to be as environmentally conscious as you can, just because you know it is important to me... like our first date when we went to the beach and picked up discarded fishing line.

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 showing me that movies can be just as cool as books and for opening yourself up to the fact that books can be as cool as movies. (Especially sci-fi, fantasy, and time-period genres!)

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 complementing my skill set so well that we can fix anything between the two of us, especially with your knowledge of cars and computers.

Thank you for doing everything differently, often without a word, so that 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 walking to the kitchen or bathroom with me in the dark after we watch a little too scary movie.

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 that 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, enjoying the rather in depth backstories I make for everything, and general silliness that is what hold 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 that I can see the things I long to see and to rest my heart that 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 4+ hours (which would have taken a person on foot about 30-45 minutes to accomplish) around the tulip field that we were married in, just because it has such a symbolic meaning to our marriage.  (Continues below photo!)

Timeline of amazing memories every year in the tulip field in which we were married (another anniversary gift!) 

Thank you for being my partner in raising a special needs, but incredible little boy. (Continues below photo!)
Timeline of the amazing memories with our son since he was born (with the exception of his time in the NICU) in the tulip field in which we were married

Thanks for being here with me, where it is difficult and painful and often in 'survival mode', instead of deciding that the easier path is the better path.

I'm sure that there is so much more that I am forgetting here, but I hope this is enough to show you that I care, and 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 love you very much! I'm glad to have had you in my life through all of the crazy twists that 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.

Here are the remaining photos from our tulip field pilgrimage this year....

Smelling (or kissing) the tulips


Falling in the slippery mud
Jumping through the mud (left), The unspeakable horror of muddy hands for a child with autism





L and me
Tulip rows (left), L is so unusually gentle with flowers and plants (right)

It was extremely muddy this year- absolutely terrible for a wheelchair, but great for puddle jumping





Definitely kissing tulips- he loves to kiss plants, trees, and especially flowers
Family photo
"Evil Queen" tulips, as we call them in our family (left), tulips reflecting in a puddle (right)


I love you! Happy Anniversary!