The Beast and The Glass Box

I've talked about The Beast before.

The night Noah went into his post transplant Cath I stared into its awful eyes and won.

Noah was back in ICU after receiving that ill-fated blood transfusion that gave him TRALI (Transfusion Related Acute Lung Injury). He was so sick and yet there didn't seem to be much explanation for his ectopy (unusual Heart Rhythms) or why they couldn't get good blood pressure readings. Dr. Pietra decided it was time for another Cath to check pressure and see if we could find some answers.

I already felt like my last thread of sanity was beginning to fray. I just wasn't prepared for him to get so sick after he had been so strong waiting for his new angel heart. It was such an unwelcome and unexpected turn of events, I was rattled.

Then, while he was in having his cath done I sat in the hallway. I tried peaking through the window to see if the atmosphere was calm or anxious. The nurses were wonderful and called me every hour to give me updates but if they were even a minute late, there I was peering through the window. As if that would tell me anything.

Finally, Alison (Noah's Transplant Coordinator) and Dr. Pietra came out to talk to me.

Turns out Noah's Blood Pressure is insanely high. Not just fatally high for a baby but fatally high for an adult. They were quickly wrapping up the cath and rushing him down to radiology for an MRI of his brain. The likelihood that Noah had a massive Brain Bleed was almost a guarantee.

I rode down the patient elevators with Noah and the rest of the team. Alison came along to be my liaison and keep me updated.

I remember stepping off the elevator and watching them wheel Noah into the imaging room and feeling this beast inside me.

It was angry and dangerous and loud and it was ripping at my insides trying to get out.

It was all I could do to keep that awful monster locked inside me. There is a saying that a person learns how strong they are when they have to be. I learned that night that I was much stronger than I imagined.

Alison came out to update me and the look on her face terrified me. But everything was fine. There was no evidence of any bleed or damage.

But that night I saw something inside of me that even now I feel like I can't completely control. I would be lying if I said it didn't scare me still.

I've come to find out that I'm not the only one who has met this monster. Who has felt it rip and tear up your insides as it tries to break free. Who has done everything in their power to keep it locked up inside so it doesn't break free.

Even now, I sense it sometimes. But that story will have to wait.

The Beast and The Glass Box: To Be Continued. . .

I Had To Share

From 5 Minutes for Mom (I hope they don't mind me reposting this.)

January 7, 2009

4 Year Old Coleman Has Gone To Heaven

Written by Susan

I’m reading Coleman Scott Larson’s carepages update and I’m choking on a lump in my throat as tears well up…

You might be one of the thousands who have been following Coleman’s journey on carepages.com, or you might remember Coleman from our Blogs Can Change Lives campaign, or this might be the first time you’ve seen his photo… regardless of how long each of us have known Coleman, he has a message for us:

“Coleman would NOT want you to be mad at God.”

I do not know how Coleman’s mother can write with such courage… it must be God’s strength within her.

Here are some excerpts from her recent post called “Tears filled with Hope”.

“Coleman said long ago, “Some day I won’t need NO more meds or pokes, wight mommy?”

No more sweetie. You are free.

Today the world may have cried a river of tears for a little boy’s life that ended way too soon, but we believe Heaven is REJOICING over Coleman’s job well done.

Coleman was an amazing child of God and we were so honored to be chosen as his parents.

He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.”

Coleman’s mother tells this profound story… you MUST read this…

“One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?

I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God. Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him… and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come-

I guess what I’m saying is I know for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.

Many people have asked how Caden is doing. Now that’s a long story, but we have assured him that we love him. He is dealing the best way he can- just like us.

I turned my desk Praying Parent calendar today, and thought I’d share what it said…
“We are dependent on God to enable us to raise our child properly, and He will see to it that our child’s life is blessed.” One thing I have learned is that I should not try to force my own will on my child in prayer. I have found it is better to pray more along the lines of “Lord show me how to pray for this child. Help me to raise him Your way, and may Your will be done in his life.”

I believe God’s will was done through Coleman. I know it.”

The family is asking that instead of flowers, please send donations in Coleman’s memory to either:

The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org

A Different Perspective

Where am I?

Oh, I'm in my dumb crib. I remember now. Mom put me here last night. Man, I still don't want to be here. Maybe if I scream she'll get me out this time.

"AAAAAAHHHHHHHH"

Ah, there she is. Hi, mommy! Come here, let me give you kisses... Oh, sorry. I know it hurts when I bite your lip. I just can't help myself.

So, what's for breakfast. I want it now.

"AAAAAHHHHHHHH"

Didn't work. Let's try again.

"AAAAAHHHHHHH"

There it is.

No! Wait! I don't want this! What is she thinking? I want the yellow cheesy noodles. Maybe if I throw it I'll get my cheese.

YES! That one went far! Oh, and check that out! That one is sticking to the wall. Oh, wait. Mommy doesn't look very happy.

"All Done!"

Why isn't she getting me cheesy noodles? No! I don't want to get down.

"AAAAAAAAAAHHHHHHHHHHHHHH"

Why are you taking me out of the kitchen? I want cheesy noodles!

"AAAAAAAAAAHHHHHHHHHHHH"

Now is my chance. Mommy isn't looking. Okay, here is the cabinet. Oh, looky here. I remember this box. I think there is some yummy stuff in here.

Oops. Mommy isn't going to be happy that I spilled these chocolate balls all over the floor again.

HEY! Don't take them away! These are fun!

"AAAAAAAAHHHHHHHHHHH"

Don't make me go in the other room again! I want to be in the kitchen!

Oh, I wonder what's behind this door? Oh, bowls! FUN!

No, no, no!!! I want the bowls!

"AAAAAAAAAAAAHHHHHHHHHHH"

Man, mommy is no fun. Maybe I should warm her up with a kiss.

Oops! I didn't mean to bite again. Sorry mom.

Well... let's go see what Lilly is doing.

Ahh... a movie! I sure like standing right in front of the TV. Oh, and look at all these buttons. I wonder what this one does.

What? What did I do? Hey, where did the movie go?

No, Mom! Don't make me move! I wanted to be right there!!!

"AAAAAAAAAAAHHHHHHHHHHHHH"

Hey, why is Lilly is the bathroom? I want to be in the bathroom. Maybe there is water in the tub! I love the water. I think I'll go check it out. Hey... no...no... let me in there!! I know you're hiding the water from me!!

"AAAAAAAAAAHHHHHHHHHHHHHHHHHHH"

Fine, let's go see if mommy was smart enough to turn on Signing Time for me. Oh, good Mommy. Oh... I love Rachel. Look at all those fun signs I could use. By why? Mommy sure seems to get excited when I yell. Oh, yelling is fun.

"AAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH"

YAY! Mommy came to watch Signing Time with me! Come here mom, let me give you a kiss.

Oops!

(The first hour of Noah's day, from Noah's perspective, as told my Noah's mommy)