The never-ending story

Yesterday, I had my first break down since David was admitted. I called up to his room to chat with his nurse and ended up sobbing and sobbing. Like any parent, I want answers, and more importantly I want results. At this point it seems like they are doing everything they can and yet he’s still on just as much oxygen, with just as much pressure. At this rate, we could be in the hospital for a month! I mean, who hasn’t been battling a cough and phlegm for weeks now? I have! And I’m relatively healthy and have strong lungs. Poor David already starts at a disadvantage and has small, compact lungs. While he’s not regressing, he’s certainly not progressing and that leaves Jason and I feeling helpless.
David is happy, he’s engaging. He’s having dance parties with his visitors and he misses us. This whole stay may be “easier” to take if he at least appeared sick. If he had a fever and was lethargic and fussy, we may think, “Ok, he’s really sick. He needs to be admitted.” But he’s his happy, giddy self. He’s flirting and smiling and winning hearts each day. We miss him! We want him home.
I will not speak for the rest of my dear Down syndrome community. The following is simply my own personal views and experience. This is the part of Down syndrome that is hard. David is not hard. David is a delight. And there are many kiddos with Down syndrome who don’t have the health issues that David and others have. For them, the difficulty is with IEP’s and inclusion and milestones. And I am sure that is hard. I’m sure that’s exhausting and frustrating. But today, I would take six more hours on the phone fighting with Medicaid (which, sadly, is also part of my norm) over another day in the hospital. Down syndrome is nothing like I thought it would be. It is more rewarding and more challenging than I expected. But it’s the health issues that provide the greatest challenge. It’s the idea that this could be forever. Not a lifetime hospital stay, but we could expect to be hospitalized at least once a year for life! That’s exhausting.
Today, keep praying for us. Pray that David turns a major corner. Pray that all the suctioning and oxygen finally click and his body starts to heal. Pray that Jason, Ella & I can continue and be encouraged. Pray for our rest, health and bodies (we’re all a little sick) and pray that this is David’s only hospital stay in 2015.
“The Lord will fight for you; You need only to be still.” Exodus 14:14

IMG_2040

The justification

We’re on day four of a new hospital stay. It’s been over 280 days since the last time we were admitted. Long enough to get comfortable & a little cocky. Hospital stays are for the really young & “sickly”. David is bigger, stronger, healthier. He can handle anything! Or so we thought.
His scheduled Botox to “fix” his swallowing issues has turned into four full days of tubes, wires & questions. Why aren’t his oxygen levels higher? Is this really just a common cold? Did the Botox move?
In the meantime, Jason & I are trying to navigate this all over again. The last time we were here, this was all “normal”. He had spent over half of his life in the hospital so we had a routine down and a flow. This time, we’re rattled. It’s unexpected and frustrating. Plus, he’s bigger and understands more so going about our daily business and trusting his care to nurses isn’t as realistic. He’s bored and interactive and misses us when we’re gone. We’ve been taking turns spending every night here but we have Ella to consider too. And, unlike last time, she has school and a routine to contend with as well.
In the midst of all this, I realize how much I try and normalize our situation. I keep putting on a happy face and moving forward with previous plans. After all, this is “typical” for us. The world can’t stop because our little guy is in a time out.
But our world can. I’m not sure why I continue to “Pollyanna” our situation and down play this experience. If anyone else I knew had a kiddo in the hospital, I would be freaking out for them. So why aren’t I? I was invited to a friends baby shower last Saturday. Up until Friday night I still had every intention to go even though it was over an hours drive away one way. Why? Why didn’t I immediately say I couldn’t come like I would expect any other mother whose child is hospitalized to do? *
Yes, hospital stays have been an unfortunate normal in our lives over the past 18 months. I’m guessing we still have a few in our future as well. But it’s ok for me to be mad and upset about every single one. I can freak out every time my son is hooked up to tubes and out of my care for the night. I don’t want this normal and that’s ok too. So, we’ll hold out for the day when overnight stays really are a distant memory and marvel at how well we handled this unpredictable life.
* PS, if you are my friend who had the baby shower on Saturday, please know, these thoughts had nothing to do with you! I felt no pressure to attend. It was something I was wrestling with internally

2015/01/img_2024.jpg

The anniversary

One year ago today was a life changing day.  I’ve never before and fortunately, never since, experienced such fear.  I’ve never come so close to the edge and I pray I never have to be there again.

I can’t speak for all parents of special needs, but for us, on David’s journey, there have been celebrations, milestones and anniversaries along the way.  There’s of course, the day he was born.  The day we actually got to take him home.  The day his heart was “cleared” and cardio check-ups were complete.  But there are also days worth celebrating that you’d like never to remember.  Today is one of those days.  One year ago today David almost died.  I can hardly type the words, it still seems too dangerous to even write.  We were so close to losing him and even that day, my mind stopped me from going there.  What parent could?  So we prayed and cried and paced and literally clung to him and prayed some more.  And God answered our prayers.  David survived.

So today is our anniversary and that calls for celebration.  I celebrate that David is with us and cheer for the moments we’ve had over the past 365 days.  In the same breathe, I mourn the people we were before that horrible day.  We are forever changed.  In some ways for the better and in some ways . . . well, I guess we’ll see as time goes on.

David is a survivor and today, as difficult as it is to look back, it makes looking forward that much sweeter.  I’ve seen the dark side of “what could have been” and I much prefer where we are now.  Thank you for all who prayed for our sweet boy and continue to pray for him.  God willing, there are many milestones and happy anniversaries to come.

D

 

The sleep study

Where to begin? I haven’t posted in awhile so the fact that David & I are back at Children’s Hospital may come as a surprise. But this visit was planned & scheduled. The doctors are doing a sleep study to make sure they fully understand David’s swallow & breathing and if sleep affects either. Lucky me, I get to stay with him. He’s hooked up to a bunch of machines in a pitch black room so, since I don’t go to sleep at 7pm like him, I’m in the cafeteria ready People magazine & having “dinner” (anyone who’s spent much time in hospitals knows this is often potato chips, chocolate, a fruit cup and free coffee)
There’s not much to report so far. It took D a while to get settled after they stuck him with all the electrodes. I even mentioned to the nurse that I hoped the first 30 minutes weren’t actually part of the test since crying uncontrollably isn’t part of his normal bedtime routine. She assured me it wasn’t.
So now we wait. Like so many other events in this sweet boys life only time will tell. I hope he’ll have a good night and I’ll have a good one too.
(I’d post a picture of him, but his face is literally wrapped up like a mummy & even though he’s the cutest mummy I’ve ever seen, I’m not sure I want to document it.)

Update: the procedure

Thank you all for the prayers! David did great! They’re going to keep him overnight for observation, but he should be home tomorrow by 3:00. They said everything looks “normal”. So far, it looks like a tone & muscle issue, and a “floppy” trachea. They’d like to do a sleep study in the near future but, another surgery doesn’t seem to be on the horizon (for now) He’s is his happy, smiley self and flirting with all the nurses. God is good!

The procedure

At 7:30 today Drs. are performing a bronchoscopy on David. He’ll be put under anesthesia and a tube and camera will be inserted down his throat. The Drs. are hoping to get some information about why he has gotten sick so continuously this winter. This will also be the first step in better understanding why he has trouble swallowing & hopefully be the beginning of the end of the G-tube.
This poor boy has been through more than his fair share of challenges since he was born. He has spent more than half his life in the hospital & has been subjected to needle pokes, breathing masks that resemble Hannibal Lector, tests, procedures, surgeries & exams that would leaving any adult jaded and screaming, “Enough!” And yet he does it all with a smile that melts your heart & a sweetness that literally draws people to him. He is seemingly unaffected, for now. He is loving and cuddly and precious.
Please keep David, the doctors, Jason, Ella & I in your prayers today. 2014 is proving to be not much of an improvement over 2013. We’re holding on to the last shreds of hope that this is the beginning of the end of the most difficult season of our lives & that boring, routine family life is right around the corner.

20140417-062356.jpg

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.’

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.