Broken Hallelujah

Life.  It's so unpredictable.  Some days are beautiful and some are horrible, but knowing that each one was orchestrated by God is what gets us through even the worst of them.  It's in those dark times that true faith is exercised.  Well, let's just say we've been doing a lot of exercising lately.  (And clearly not the physical kind.)

Just a little over a month ago, my four year old nephew, Hayden, hit his head twice in one weekend and in almost the same spot.  After the second injury, he began vomiting and complaining about headaches.  This went on for a few days, so my Brother & Sister in Law took him to the ER.  They told them his ct scan looked normal, that it was a concussion or virus, to treat the symptoms, and follow up with his pediatrician.  So the next day they followed up with the pediatrician who said the same thing and sent them home.  The symptoms continued.  He couldn't even hold down a piece of ice.  So they took him to a different ER for another opinion.  Those doctors almost sent him home as well, but one of them decided it would be best to admit him and do an MRI.  Praise God for that Doctor!

On Friday, April 4th, we sat for hours cramped in a tiny, dark hospital room whispering conversations to each other while Hayden slept with a pillow over his face, and we were anxiously awaiting the MRI results when the Doctor came in and asked to speak with my Brother and Sister in Law privately.  They stepped out and the rest of us remained in the room in total silence.  The only sound was the ticking of the clock.  And my heart began to sink deeper into my chest with each tick.  Over thirty minutes had gone by, (which seemed like an eternity) and we knew that something was not right.  That this was more than a concussion.  More than a virus.

We met them in the hallway as they returned.  Tears streaming down my Sister in Law's face as she was barely able to mutter the words, "He has a small brain tumor."  A brain tumor.  He has a brain tumor.  This can't be real.  This is not happening.  This is a bad dream.   But it wasn't a bad dream.  It was real.  And it was scary.  And it was hard to comprehend.  Still is.

(Ironically, I had sent this picture to my nephew the night before to tell him that I thought he was a warrior and was going to be ok.  Having no clue how much of a warrior he would really be.)

My parents had not been gone from the hospital long and were frantically texting for information, so I knew I had to make the phone call.  I was shaking and couldn't believe the words that were coming out of my own mouth as I told my Dad, "You need to come back.  He has a brain tumor."  Each time those words came out of my mouth, tears came down my face.  It seemed so surreal just saying it.  And as upsetting as it was for me and the rest of the family, I could not even begin to imagine what Dusty and April were going through.  My heart ached so badly for them. And for Hayden as well.

They moved him to ICU that night.  It was a long, scary weekend as his symptoms continued to worsen even after strong pain medicine.  But Praise the Lord, he made it to Monday morning before having to have surgery to drain fluid build-up, relieve the pressure, and remove as much of the tumor as possible for biopsy.  God carried him through the surgery as well.  After an eventful week of recovery, consultation, and lots of confusion, the prayerful decision was made to go to St. Jude for further consultation of treatment options.  So on Monday, April 14th, Hayden and his mom were airlifted there, and my brother and I arrived hours later by car.

As we arrived, we were both sick to our stomachs.  It was a bittersweet feeling.  We were so thankful that a place such as St. Jude exists, but we hated the fact that we had to be there.  Walking through the halls felt like I was having an out of body experience.  It was a place I'd heard about all of my life.  I've supported them by buying St. Jude home tickets.  One of Deacon's buddies is even currently undergoing treatment there.  But I just couldn't quite comprehend the fact that we were there for us.  For my family.  My blood.  For someone that I love from the depths of my heart.  It was a tough pill to swallow.

At first, I didn't know how to handle being there.  I didn't want to stare at people, but I didn't want to look away and pretend that I didn't see them either.  I'm just awkward like that anyway in normal situations when passing people, but this was far from normal.  At least for me.  It was not like anything I had ever experienced.  I remember when Deacon was first born I was like a total stalker of anyone that had Down Syndrome.  Having no experience of being around anyone with DS, it was like hitting the jackpot when we would see someone out in public.  I even approached a few strangers like a crazy person.  I could have just stared at them for hours...seeing what their life was like, how they interacted with others, and what things they did.  What I realized was that their lives weren't over like I thought mine was at first.  They were still just normal families with a little bit different situations.  They weren't sad or miserable or any of those other things that my misperceptions made me think they would be.  And it was the same thing with these people...although Lord knows they have their moments, they didn't seem sad or grieving.  They were just doing what they had to do. Fighting the fight and taking it one day at a time.  And I knew that was what we would do too.

After all, that's all we can do.  None of us know what tomorrow holds, so we can all only take it one day at a time.  And just TRUST.  Trust in God's plan.  That he will take care of us.  We have to believe that long before we were even born, He knew every part of us and each storm that we would face.  We have to praise Him in the midst of those storms and know that He will see us through it.  I don't know how people survive situations without holding on to His promises.  We have seen God work and felt His presence in all of the details of this past month...big and small. 

Hayden began his chemotherapy on Friday, April 25th, and God is definitely taking care of him.  He's handled this first round very well so far.  He will have five more rounds, another surgery, and possibly 7 weeks of radiation as his tumor has a high recurrence rate without it.  Before any of this began, he had become enamored with Superman, and that obsession has been relevant to the situation.  We've labeled him our Little Superhero and are calling him "SuperHayden"!  And let me just tell you that Team Hayden ROCKS!!! The support given to my brother and his family has just been incredible!! The love. The prayers. Oh man, the prayers! The donations. The pictures that people post wearing their shirts. (Those give me chill bumps.) We are so appreciative.  My Brother and April especially.  God is so good!! 

(Side note: If you would like to support them by buying a t-shirt, click here for youth, ladies, and adults. And click here for infant/toddler.  Shirts are available through May25.)

Just this week I read of a mother that lost her newborn son to a heart defect, a daughter who lost her parents in a tragic situation, a family who changed a life and brought their daughter home from China, a husband who lost his wife to cancer after just delivering twins not too long ago, and a young man with Down Syndrome who was accepted into college.  Everyone has a story.  Some are more detailed than others.  Some happier than others.  But each one is equally important.  God loves us all and cares for us all the same.  If we seek Him and allow him to, He can and will provide peace and joy even in the most difficult of times.   "And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus." (Philipians 4:7)  The road ahead of Hayden is not going to be easy, but thank God for this promise.  

I put together this video from a trip we all took a little over a month before we found out about Hayden, and a month after which was this past weekend.  We went to the outskirts of Memphis to visit them.  Another hard part of this journey is them being separated as a family.  My parents took Hudson up so we could have a family birthday party since he will turn two this week.  

(Forgive me, I dont know how to make this bigger...just make it full screen)

We are a very close knit family.  We will walk through this together.  We will sing praises to His name through it all.  We will offer our broken hallelujah.  We WILL choose JOY! I pray you too will seek him and find joy in the valleys as well as the mountaintops.  God bless!

P.S. I'm adding a few more joyful moments since I haven't blogged in a while.  Also, I'm asking for an unspoken prayer request for Dustin and I.  Hopefully I will be able to share more details soon. Thank you!

Grandparent's Day (after Sister's performance)

Her work was featured at Artbreak. I remember having mine there when I was a kid.  I thought it was so cool.  Still do. ;)

Making "Selfies"

This was Deacon's :)

Field Day

  And Easter Sunday

Oh, and P.S.S. WE HAVE A FULL-BLOWN WALKER!! (Insert big huge smile)  Been waiting for this day for a while.  I'm so darn proud of him!

What was I so Afraid of?

Today is World Down Syndrome Day.  Two and a half years ago I had no idea that such a day existed, nor would I have dreamed that I would be celebrating it.  But I have a very, very good reason to. ;)

I'm sure I've mentioned it before, but I can remember the night of his birth like it was yesterday.  Sitting in the hospital bed.  Staring at the wall in front of me with nothing but a clock on it.  Its hands did not seem to be moving, but all I wanted was for that night to be over.  I remember thinking, "My son has Down Syndrome.  My son has Down Syndrome.  I cannot believe MY son has Down Syndrome."  I remember the fear, the lump in my throat, and the pain I felt in the pit of my stomach as those words kept repeating over and over and over in my head.

There are many times that I look at him now, and flash back to that night, that bed, the clock, its hands, those thoughts, my fears...and all I can do is smile.

When I walk into the room after he wakes up in the morning, he greets me with an enthusiastic "HI!", a huge wave, and a big grin.  

He does the same thing to complete strangers everywhere we go.  

And each time I think, "What was I so afraid of?"

We're on the floor.  I finish changing his diaper, put his clothes on, and stand him up.  He looks at me, wraps his arms around my neck, and says, "Bobba!" (Can't quite get that "m" sound)  And I think to myself, "What was I so afraid of?"

We're sitting outside, and I ask him if he wants to draw with chalk.  He holds it up, says, "Calk!" and giggles.  And I think, "What was I so afraid of?"

And then he goes and gets a ball, and says "Ball?"  He rolls it to me.  I roll it back.  He laughs.  I laugh.  And I think to myself, "What was I so afraid of?"

He's sitting in the living room chugging a sippy cup.  He burps, and out of nowhere says, "Scuse You!" to himself.  We crack up laughing.  So does he.  And then he tries to do it again.

He finishes breakfast, cruises his way across the living room, picks up the remote control, hands it to me, points to the TV, and says, "Bar-Bar!" (aka Barney) 

I watch him interact with his Brother and Sister. They love him like crazy.  They teach him new words, and he tries his best to repeat them.  They laugh and play together.  I watch them praise him for the smallest of things.  

And I think to myself, "What was I so afraid of?"

I ask him if he's ready to go night night.  He crinkles up his nose, squints his eyes, and says, "Nooo!" And then he giggles.

He does something that he knows he's not supposed to.  He hears me say, "Deacon!" He turns, looks at me, shakes his little finger, and says, "No No!"

And I think to myself, "What was I so afraid of?"

He looks at himself in the mirror, points, says "Deacon!", and cracks up laughing.

Everyday I watch him grow, learn, play, and explore.  He's developing his own little personality.  Expressing his likes and his dislikes.  Making messes, and acting like a typical two year old.

And everyday I find myself thinking, "What was I so afraid of?"

And that clock...now I wish it would slow down.

On this day, and every day, I celebrate this boy along with all of the other individuals who rock an extra chromosome.   I pray that the world can see how beautiful each and every one of them are.  Hand-crafted by God, we are all the same in His eyes.  Each person on this Earth was fearfully and wonderfully made by Him.  What a boring place this would be if we were all the same!

Happy World Down Syndrome Day!!!