The second act

I’m not going to harp on the fact that David has spent over half of his life in the hospital.  We’ve said it, it’s out there, we’re sad, but there’s nothing we can do.  Instead, I’m going to focus on the positives because that’s what I do; I’m Pollyanna.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. (2 Cor. 4:8-9)  Ok, we’re a little destroyed.  Our precious boys is spending day after day & week after week in a hospital bed.  We have to get in our car and drive to spend time with him.  Each day we think we’re nearing the end and then there’s another setback and we’re not sure where the end is.

There are so many examples in the scripture of times when God tested those who followed Him, those who loved Him.  It’s hard for me to rationalize this because I don’t want to think God is causing harm to David just to teach me a lesson.  I’ve cried so many times and begged, “Let it be me, I’ll gladly take his place and spend every day in the hospital.  It’s not fair!”  But, there is a lesson that is being learned and faith muscles that are being stretched and pulled regardless of why this is happening.  Jason and I are a team in a truer sense than ever before.  Our family is united and strong.  I know I am more compassionate and more thoughtful.  I am a better mother to Ella and David because of my trials.

This weekend, almost in unison, Jason and I both said, “Let go and let God.”  It was so cheesy and kind of embarrassing but there’s no other way to describe what we are learning to do.  As type A overachievers, we are always working, striving & controlling everything we can.  For the first time, we are helpless.  The only thing we can do is have faith.  So we do.  We have faith and hope for our future.  We have faith in David.  We have faith in a day when our whole family will be physically together all the time.

Jeremiah 29:11 has been my life verse since high school.  It was our class verse at Westmont and it has been my personal motto through my marriage and motherhood:‘For I know the plans I have for you declares the Lord.  Plans to prosper you and not to harm you.  Plans to give you hope and a future.’

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The marathon

Parenting is a journey, every parent knows that.  It’s a marathon, not a sprint and it comes with multiple ups and downs, detours and unexpected challenges.  When we received our prenatal diagnosis, we were blindsided.  We mourned and adjusted our plans and came to terms with our new life.  Then, we received David’s prenatal diagnosis of duodenal atresia.  Down syndrome took a back seat to his impending surgery and real health issues.  He sailed through his surgery, began his recovery and then got really sick.  They diagnosed  Hirschsprung’s and he rocked another surgery and sailed through another recovery.  We took him home for 12 blissful days before he returned and then overcame yet another illness and ANOTHER surgery for his G-tube.  Each step on this journey we’ve told ourselves, “Ok, if he can get through this, it’ll be smooth sailing.”  But really, that has never been true for us.  David has been in and out of the hospital his whole short life.  In fact, he’s spent days 133 inside (ha! – like it’s jail.  it kind of is) and 114 days with us.

So here we are again, with ANOTHER hospital stay.  He has pneumonia AGAIN.  His poor little lungs are too small and it’s been too cold, he can’t handle it. (California anyone?  Let’s start a petition to FINALLY let my husband let us move!)  Or is it a faulty Nissen and he’s aspirating on his stomach contents?  They’ll do more tests as he heals, but we feel back to square one with these latest health scares.  Just when we think the end is near, we have another set back.  It’s hard to run a marathon when you were prepared and trained for a sprint.  “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”  Proverbs 13:12  We are heart sick.  We miss our sweet boy and we’re not sure when life will be “normal” or what normal even looks like for us.

Thank you for kind thoughts, prayers and sweet gestures.  We are surviving because of your support and faithfulness.

“I’ll choose to believe that sometimes the happiest ending isn’t the one you keep longing for, but something you absolutely cannot see from where you are.”  My new life motto thanks to fellow Westmont alum, Shauna Niequist

 

The ER

Name: Ella
Age: 3.5
Emergency room visits: 0

Name: David
Age: 8 months
Emergency room visits: 6

I wonder when this season of our life will be over? I wonder when we won’t have to be afraid for every cold & flu season? I wonder when Children’s Hospital and the amazing staff there won’t be a regular fixture in our lives.

I’m about to write something that might not make me very popular. I’m about to write the “thing that must not be mentioned”. Yesterday was World Down syndrome Day. My Facebook newsfeed was flooded with parents talking about how amazing their children are and how normal their lives are. I joined in! David is amazing and we truly feel blessed that he is in our lives. But, it’s not “normal”. Taking your eight-month old to the ER for the sixth time is not “normal”. I can’t wait for normal, I long for normal. I can’t wait to read back on earlier posts and remember what a difficult season this was. I can’t wait to be in the midst of friends and birthday parties at school and have this all be a distant memory. But so far, it’s not. So far, the hospital is our “normal”.

A Down syndrome diagnosis doesn’t guarantee hospital visits. There are many, many children out there who live perfectly typical even boring lives. Someday, we may be that family. But today, we’re taking our sweet boy to the ER again.

World Down syndrome Day

Oh my gosh!  There’s an electricity about today.  I’m almost as giddy as I am on my kids’ birthdays (or my birthday – let’s be honest)  World Down syndrome Day just has a feel.  Like Valentine’s Day or the last day of school before Christmas break.  Everyone’s happy, there’s lots of laughing and sharing plans.  For us, there’s a party and gathering with 40+ David supporters.  It’s so fun!

This is my first WDSD but so far, I like it.  Last year, I didn’t even know there was such a thing as World Down syndrome Day and I wasn’t in a place to celebrate even if I had.  This year, David has had the privileged to be featured in three World Down syndrome Day promotions.

Today, we are celebrating all our new friends.  We are celebrating that little something extra.  We are celebrating joy and love.  We are celebrating David.

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A Day in the Life

I knew it would happen.  That day when I realized, “This isn’t bad”, “I can’t believe I was afraid of this” and “Oh my gosh, I’m so happy David has Down syndrome.”  That’s right, I’m happy about his diagnosis.  He truly is the sweetest, happiest baby I’ve ever been around and he brings us so much joy.  His smile lights up the room and my heart melts when he giggles.  He couldn’t be any better and I wouldn’t ask for him to be any different.  He is cuddly and precious and having Down syndrome just makes him that much more awesome.  To any parent who has received a prenatal diagnosis or a surprise birth diagnosis, it will come.  The joy, the happiness, the overwhelming gratefulness that this little person is about to change your life.  We feel blessed to be ingrained in this little boy’s life.

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The ledge

I wonder what’s holding me back. I wonder why I’m afraid to really put myself out there. I often make excuses; David is still sick, I have a full-time job, I have too much on my plate. Why? So often, when I actually put words to what I want, it works out. Not that I always get what I want, but when I acknowledge my hearts desire it lights a fight in me to pursue it. Why is this time different? Why am I using David as an excuse? Will that be permanent? Will I constantly make excuses for him and not push him and myself to be our very best? What’s it going to take for me to take a leap of faith and go after what I want?

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The STAM (stay at home mom)

For the past two days Ella has had either pink eye or a really bad cold that settled into both eyes. She’s been puffy & swollen and her sweet little eyes looked like mosquito bites. Since, David is still in the hospital with pneumonia, RSV & other respiratory viruses, I’ve been in lock down in our house with her. Even though she’s sick, her energy has not waned. There has been no lounging on the couch watching movies or taking naps as she recovers. It has been high energy, loud, all in, focused intensity.
And I have to say, I am not cut out to be a stay-at-home mom. Props to those ladies that can do it. I am completely exhausted and truly looking forward to being back at work tomorrow. I don’t know how so many of my friends do it with a smile & joy. It is not for me. I need adult interaction. I need coffee breaks. I need to go to the bathroom entirely by myself.
So tomorrow I will wake up a little bit early, wear heels because I can, brush my teeth before 11:00 & happily pour my travel coffee mug to go.
To all my friends who choose to stay home with their children, I admire you. You’re amazing. I cannot do what you do. Now please, go take a bath & have a glass of wine. I know I am!

The 3 of us

While David is in the expert hands of the PICU staff recovering from pneumonia, RSV, corona virus & rhino virus (phew!), Jason & I took advantage of a snowy Friday night in with our first born. Ella requested pizza & Tangled and we took a page from “make the smallest things magical:101” and had a family picnic in our homemade fort.

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40 Days of Random Acts of Kindness

I don’t usually give anything up for Lent.  I often think about it and there have been years when I have given something up; but I don’t do it for any reason other than experimental.  I’m not intentional about it.

This year, I took a page from my creative genius boss and am implementing 40 Days of Random Acts of Kindness.  Some I’ll do on my own but a lot will involve my children.  I wrote before about Ella’s growing empathy and I want to encourage that spirit and show her how fun it is to be thoughtful of others.  I’ll post periodically on here about how we’re doing or different acts we’ve done.  I’m excited to start!  Here’s our list:

40 Days of Random Acts of Kindness

  1. Give a homeless person a $5 gift card to McDonald’s
  2. Send a “hug” in the mail
  3. Donate toys to ARC
  4. Bring my children’s child care worker a yummy dessert
  5. Relay an overheard compliment
  6. Pack a bag of water, deodorant, mouthwash, granola bar & hand sanitizer for homeless
  7. Pay for the person behind me at Starbucks
  8. Bring a bouquet of flowers to the pediatric floor to be distributed by nurses to someone who needs it most.
  9. Donate books to the library
  10. Make a meal for a family who’s baby is in the hospital
  11. Hold the door open for a stranger
  12. Leave my Postal worker a thank you note
  13. Mail an old picture to a dear friend with a note about the memory
  14. Put a lottery scratcher in a library book for the next checker-outer to find
  15. Send a thank you card to a favorite Grad school professor
  16. Write a positive review on Yelp for a place I loved
  17. Donate clothes to Good Will
  18. Take cookies to nurses on the night shift on the labor & delivery floor
  19. Let someone go in line in front of us
  20. Send a letter to a former co-worker telling them what I appreciated about them
  21. Make a donation to a battered women’s shelter
  22. Leave a thank you note for our Pastor in the offering plate
  23. Change my Facebook status to a compliment of one of my friends and tag them so all of their friends can see
  24. Be a courteous driver
  25. Have Ella mail a card to a friend
  26. Donate baby clothes and blankets to the NICU
  27. Pack healthy snacks for Jason to take to work and leave in the break room
  28. Adopt a star for a relative (Ella’s choice)
  29. Call a restaurant where I received great service and compliment the employee to their manager
  30. Leave a big tip when we go out to eat with a kind note
  31. Have Ella color a picture for a friend
  32. Pick up trash at the playground
  33. Help a fellow grocery shopper by reaching for a high item, offering them a produce bag, giving them my coupons, etc.
  34. Send Gatorade to a soccer game with Jason for his players
  35. Use my blog and Facebook to ask friends and family to donate to the National Down Syndrome Society (NDSS)
  36. Leave hand warmers at the bus stop
  37. Offer free baby-sitting to our friends for a night out.
  38. Donate canned goods to a shelter
  39. Leave a bag of candy at our neighbor’s
  40. Bring healthy snacks to our pediatricians office

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