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Handle with Care: Our Marriage #specialneeds

IMG_2346Handle with Care: Our marriage

(Or what I’ve learned about our relationship over the past 11 years while parenting a medically involved child in short, non-rhyming verse)

In the beginning.

My hair was short.

Yours was long.

There was laughter.

There were sparks.

There was a long distance relationship & college graduation & transition.

There was a u-haul that carried shelves, and a cat and tons of books from Wiconsin to Maine.

There were vows, and friends and family, and love and white lace combat boots.

There were Dreams & Hopes & Promises & Whispers about the future.


Kids are planned and in time the first one arrives.

He is a sweet, intuitive and easily woken up young lad.

There are diapers and binkies and more diapers and not sleeping.

There is spit up and sweet potatoes and rice cereal.

There is babbling, and talking and snuggling and reading and crying and eventually potty training.


Baby 2 comes along with unexpected challenges

She is labeled by the first doctor who examines her as “perfect except….”

She has lumps and bumps on her body that grow unbelievably fast.

We hear words like benign & vascular & lymphatic & hygroma.

We see her first specialist – a pediatric surgeon – when she is 3 weeks old who tells us he will “just lop off the bump and she will be normal”

We seek a second opinion (this was pre-google….can you imagine?) – our first act of parental advocacy.  We land in Boston.

We cry (or at least I did) and wonder what happened, what to expect and feel absolutely helpless and overwhelmed.  The stress is unbelievable.


We wait and watch.

We drift slowly away from one another in a zombie like fashion because of the pain, stress & chaos.  This illness keeps interrupting our life.

We try our best to deal with this huge, scary hand that we have been dealt.

We work and parent and work some more.

We sometimes sleep and often drive from Maine to Boston (but not while we are sleeping)


There is a new label that she is given that is long and confusing and scary.

There is regrowth of things that were removed.

There are new scary bumps in her spine that keep coming back and these bumps make parts of her body not work.  (how to deal with this was most certainly not in our vows)

There are more surgeries with huge risks, but our hand is forced anyways.

There are MRI’s and now an experimental medication.   There is monitoring and waiting and worry.

This disease is rare, progressive and unknown.

So here we are.


photo_1(17)At various points over the past eleven years, there have been times where I didn’t think my husband and I would still be together. We have experienced some intensely challenging times and have hit some really low spots in our relationship. Long story short, maintaining a relationship + parenting a child with multiple chronic illnesses is the toughest thing we’ve ever done.

The amount of emotional trauma that our family has dealt with (and continues to deal with) is so real and so visceral.  It’s so easy to get lost in the sadness and anxiety and for us, the unknown. Getting through the latest challenge and dealing with the fallout is something we are always struggling through (in addition to all the regular relationship/family/parenting stuff that we all do).

I’m proud to say that today, in 2013, our relationship is healthier and stronger than it’s ever been.  And it’s been a tough road to get here and to be able to say that, honestly, because there have been some days where we haven’t really liked one another.  We are at this place now because we have worked at it.  It’s also because we have made it through some really tough stuff.   We communicate ad nauseum.  But it’s also because we’ve paid attention to what we need as individuals and as partners (and have communicated those needs to one another) and we know that our own self-care, and relationship care is crucial to keep moving forward.

Here is what has worked for us:

  1. We talk.  All.the.time. We both work from home, so we have ample opportunity to chat throughout the day.
  2. We each have our own self-care toolboxes (virtual, not actual boxes)
  3. We use our self-care toolboxes and remind each other to use them. Some of my self-care strategies include – visiting the beach, making art, having coffee with a friend, writing & spending time alone.
  4. His includes: Boys night, bike riding, hammock swinging, reading and walking the dog.
  5. We strongly advocate date night! We are lucky to have a responsible 14-year old in the house, who is highly motivated by money.  Our goal is one date night a month. It doesn’t always happen, but it’s our goal.
  6. We go on early morning breakfast dates, as soon as the kids get on the bus at 6:50am
  7. We gross our kids out by hugging and kissing in front of them – their reactions are pretty hilarious.  Sometimes we overdo it to make them laugh.
  8. We maintain a close physical connection (I was asked not to discuss sex, so that’s me not discussing it)  That physical closeness is crucial.
  9. Some years, we go on vacation without kids. Sometimes tropical places, other times just a nearby hotel. We couldn’t do that without our family/friend caregiver support.
  10. We are grateful for today and are constantly reminded of how we have made it thru times that were much worse. We have learned so much from parenting our daughter.
  11. We try to find joy in everyday. Some days that is really tough.
  12. We laugh & joke & smile.
  13. We are a team.

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