Picking Up The Pieces

The last post I made was on March 21.  It just so happened to be World Down Syndrome Day, but we got the mother of all surprises that day when we learned that Tessa would be going home from her very last impatient round of chemotherapy.

So what on earth have we been doing since then? That, my friends, is a great question.  I guess I could say we are repairing a year’s worth of lost time and the tiny bits of five broken hearts.  We are working on being a family together at home again.  We are searching for whatever will make this transition go smoothly.  I remember at the beginning of treatment and throughout having many parents and hospital staffers tell me “going home isn’t easy”, “life will still be rough.”  They were right.  They were so right.  But at the time I thought they were crazy. Here we are, though, confused why nothing feels the same.  When will it be the same as it was before?  Will it ever?  I feel like I am learning how to juggle, but every time I get the hang of it someone throws three more balls in the mix forcing me to learn fast, make quick decisions and lose focus.  I am off of my game.  Balancing Tessa’s prescriptions, doctor appointments, therapy scheduling, Casin’s schedule and activities, Kendallll’s…everything, and work–lord, the work…I am getting my butt kicked!  And then there is this “we haven’t done anything in six months” competitive attitude circulating approaching weekends. Two busy weekends of plans, that did not really need to be plans, hit me this week. Keeping my head above water was enough for me for a long time, but it is clear that my weakness toward selfishness was getting in the way of things that I was treading so hard for in the first place…like my family, my health, and my relationships.  Newsflash–there is no award out there for the busy mom and dad…ya’ just do it.

All of these months living in fear and living in a hospital not only partially separated our family bond, but compromised a part of our values.  We fought the entitlement phase of “I deserve a night out” and “We deserve a break” and “I have done enough of this…it’s your turn” instead of thinking about what we needed and deserved.  It happens (lame excuse)…well at least I let it happen.  We are all frustrated.  We are snappy and we are bitter.  And I will be the first to say that it is easier to turn away from the rough times than it is to challenge them. I loathed in self-pity and allowed Dan to do the same until this week when out of nowhere, and without knowing each other’s thoughts, we began to discuss the exact same distaste for what was happening around us. It was a surprising first for me and my husband, but there was relief that filled our voices.

When and how could it all be repaired if we were only putting our “needs” first?  How long could we use the excuses of missing things for however many months?  How would we be able to enjoy the beauty of the life that we built if we only let fear and frustration and entitlement run the show?  I am thankful for the realization that brought us back to our roots.  When the girls were crying at night this week, there wasn’t anger.  There was midnight volunteering and king sized bed sleepovers.  When Tessa threw up for twelve hours yesterday and last night, yes there were tears but there was also teamwork. When I was tripping over two babies while making a crappy dinner, there was a dad swooping them up to read books and stack blocks.  When mountains of laundry and a disastrous house took over, there was a family together who once waited for those chaotic days and nights to happen again.  After all, that is all that we have wanted since the beginning of this trek.  It is all that matters.

Little by little, we are picking up the pieces and arranging them steadily.  It feels good to be on the same page.  It feels even better to count the reasons for happiness around me.  We aren’t there, but we are on our way.  I guess what I am trying to say is that I really could care less about how long it takes to repair our brokenness as long as we always repair it together.

World Down Syndrome Day–This Kind of Love

Happy World Down Syndrome Day (WDSD)!  Today marks the annual celebration of the third copy of that 21st chromosome shared by many.   It is a day to commemorate the achievements–big and small–of those born with Down syndrome and to show the world that our loved ones are people first…diagnosis later.  This year’s blogger theme in honor of WDSD for the International Down Syndrome Coalition is “This Kind of Love.”  Several other Down syndrome bloggers are sharing their posts on what this kind of love is really like.  Feel free to check their awesomeness out here.  Also please check out the IDSC’s 2014 WDSD video at the end of this post!

Here’s my version…

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What does this kind of love mean to me?

going home  brothersister

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This kind of love is positively contagious and addictive.

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dads girls

This kind of love is beautiful, and I have a never ending supply.

It is a funny kind of love actually…

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stand up

No really, we laugh a lot!

This kind of love is bursting at the seams…like a July 4th-fireworks-explosion-in-my-heart-every-single-day kind of love.

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This kind of love is proud.

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And it speaks volumes.

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Belmont hat day

This kind of love can be frustrating and fearful.  Sometimes this kind of love breaks my heart.

Sitting on my first ever time-out and really not happy about it!

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But this kind of love is forgiving.  It is rewarding.  It is real.  It loves you right back.

Tessa mom

This kind of love looks familiar, right?  Like you might have seen this kind before?  Maybe because this kind of love is all around you.  If everyone gave this kind of love a chance, imagine the possibilities!  This love knows no prejudice.  It has no boundaries.

Tessa 2 walk

Isn’t that the best kind of love?

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I invite everyone to celebrate on this World Down Syndrome Day.  Let’s celebrate that all life is valuable and meaningful.  Let’s celebrate the differences in all of us.  We will remember how much this love has grown from the time it first bloomed.

Today let’s celebrate this kind of love.

Happy World Down Syndrome Day!

WDSD 2014