Sunday, January 2, 2011

Club

Being in the hospital is strange.  It is a lonely and isolating place, yet I am surrounded by other parents who know too well what we are dealing with.  I have come to the realization that we are the newest members of one of the worst clubs on Earth:  Parents with Sick Kids.  It doesn't matter what it is that the child has; it is torture for the parents.  Yet, I think there may be a special medal or level of membership reserved for those of us with the really bad stuff, the conditions that don't have a pill or injection or regiment that leads to a cure.

We are on the oncology and hematology unit, reserved only for those with horrible blood diseases and cancers.  It's a small place, but it's bustling all the time.  I have met moms of kids with sickle cell anemia, leukemia, hydrocephalus and a few other diseases.  Scarlett is not the youngest, or the sickest.  She may be the loudest...

One family, our first roommates, travel from out of state to receive care on a regular basis.  They stay overnight or for weeks, depending on the next course of treatment.  As the mom toured me around the hospital after we were admitted, she told me how she was missing her other son's birthday.  They were paying for a taxi back to the airport, so my parents drove them instead.  Her son is nearing the end of treatment and is doing well.

Our second roommate was a little boy with some kind of blood disease, I didn't know what.  he was admitted in the middle of the night.  I overheard him the next day: "Mom, I just want my normal life back.  I want to go back to the way it was.  I want to ride a roller coaster.  But I can't because my platelets are low, low, low!"  I didn't hear or see his mom's response, but I felt the pain for her.  I can only hope that Scarlett is done with this before she can talk.
Our newest roommate is 10-month old with cysts in his brain.  His condition was diagnosed in utero by ultrasound.  His mom, who may be barely 20, was given the option of termination at 5 1/2 months pregnant.  She chose to leave it to God, and her son is thriving.  She detailed all the procedures he has had since he was born...he has spent months of his short life in hospital rooms like this. Now, he may have an infection that is causing swelling around his brain.  She tries to keep him calm because, when he cries hard, pressure builds up in his brain and causes problems for his shunt.  She cried with him as they continually tried to get an IV in, and then found new strength and started telling them that no one else would stick her baby tonight, he was done.  

We swap stories like war veterans.  Diagnoses, emergency visits, IVs, surgeries are the shrapnel we have under our skin.  We all know the darkness that the others have faced.  It doesn't always look the same, but it is so dark, so haunting, it leaves traces that are hard to hide.

There is a worse club: those that have lost the battle.  I am still fighting, and I am not ready to trade in my membership yet.

28 comments:

Lindi said...

I agree.. every group i have joined for women who have had a loss, say the same thing in the beginning "welcome to the club nobody wants to be a part of". It's like a crazy world that brings people closer together over the worst thing ever.

Emily said...

My prayers are with you, for strength, peace, and encouragment. We have a mighty God, and with Him, all things are possible.

Rebecca said...

Your stories are so amazing..Scarlett,you,and Chris are so A-M-A-Z-I-N-G. I just want you to STAY STRONG. Praying for that little babygirl EVERYDAY!!!!

.Katie. said...

sending you so many prayers that you never have to join that second club. i'm so sorry for all you're going through.

Elizabeth said...

What a beautifully written and heart-wrenching post. I am so sorry you are part of this club and I hope you are soon trading in your membership for membership in the club for parents whose children have made it through. I pray I never have to know the pain you are going through. Our prayers are with you.

Anonymous said...

In regards to your comment about hoping this is done before she can talk; try and look at it this way, she is young enough that hopefully she will never remember any of this!! I can only imagine what you and your family are going through and I pray every night for you!

Lindsey said...

Keep fighting and praying. One day you will be able to say "I was a part of that club, but that was then and we are fine now."

Natalie said...

Just wanted to tell you, I talked to my 6yo daughter about Scarlett and she prays for her too. She has also been drawing "get well" pictures for her... though I doubt we'll be able to send them. We live in Poland. I will try to take pictures of them and post on facebook in scarlett's group so you can at least get them that way. Praying for you all, every day!

Britt Business said...

Your story has been very touching to follow. I am sending many prayers your way every day.

Melissa said...

I just began following your blog via a link from thebump. The strength at you posses is utterly amazing. My thoughts and prayers are with you and your family at this time. God Bless Scarlett.

Anonymous said...

I lift you and your family up in prayer constantly. I can't imagine what you are going through, but I see how hard you are fighting. Don't give up! God is completely in control and he hears and sees and knows everything that is going on right now. He knows the outcome. I pray for peace and understanding in your hearts, for strength to fuel your fight, for faith in our heavenly creator. And I pray for his healing intervention to reign down on your precious baby. Thank you for sharing your journey with us. Stay strong, mama. I know that's so much easier said than done, but I pray for you to find peace and rest in Jesus Christ.

Kassie said...

I am continually astounded at the strength you both portray, and I am and will continue to pray for you and your family.

TheDearmanFamily said...

Wow. With two babies of my own I don't want to even imagine being in your footsteps. But, your blogposts put me there. I hope this blog is a deep catharsis for you as Scarlett is miraculously healed.

Thank you for sharing your journey.

Jenn said...

You put everything into words so perfectly, Brandi. Continued prayers for Scarlett, and of course all of you. I have Ella's red outfit all picked out for daycare on Wednesday, and my husband and I will both be wearing red as well. :) Hugs from Iowa.

Shay said...

I continue to pray a special prayer for you and your husband. I know Scarlett is covered in prayer as hundreds from all over the world pray for her. I hope one day you will tell her about this and how awful it was. I remember the fear in my Mother's face and the stomach where my heart should be feeling with my own children. The feeling I feel when they try again to place that IV or I hand one of my children off to a nurse.
You are a strong mother and I hope you know and feel Jesus holding your hand every step of the way and when you aren't quite strong enough know he's holding you up.

Anonymous said...

Your story breaks my heart. You are in my thoughts. I know she can make it through this, females are stubborn and she has parents like you guys :) <3

~Emily

Valentine said...

I was led to your story through the Bump. I am so deeply sorry for what you are going through and am keeping baby Scarlett and your family in my prayers.

Ashley said...

I am beyond moved with your story. Scarlett is so lucky to have you as her mother. My thoughts and prayers are with you. Thank you for sharing.

Anonymous said...

You are amazing.

Anonymous said...

I pray our good Lord will give you and Chris the strength to fight this war and win. May He will shine His holy countenance on Scarlett and heal her i Jesus name, Amen.

You are in our prayers.

Laura Langelier said...

Moms have been talking about Scarlett on Babycenter for weeks. Your daughter's story is out there and people are praying for her and your family everyday. Stay strong, I know Scarlett can beat this. -hugs-
I will be thinking of Scarlett often. Give her all of our love <3

Angel said...

i have prayed and facebooked and emailed for you. the story of your little precious is spreading like a virus. and the devil doesn't know what to do right now! he's dumbfounded! you continue to be blessed and feel the prayer around you and yours. :)

Amber Tidd Murphy said...

I heard about your story on The Bump. I'd often seen the little pictures in signature lines, but didn't know the details of your story until today when one of the Oct. Moms posted a link to your blog on the 0-3 month board. Like Chris, I often feel that my prayers fall on deaf ears -- but this is one of those moments when I'll bow my head and take a chance that someone is listening. My thoughts are with you this week. I so hope your little butterfly will make a full recovery. Stay strong for each other and for Scarlett.

Sarah said...

Many prayers to you. I cannot imagine being in your shoes. May Miss Scarlet receive a miracle of complete healing.

Anonymous said...

You and your family seem to be amazing people all around. We are in Germany right now but before my husband was stationed in Monterey, CA. I am thinking about your little girl all the time and hope that tomorrow's surgery will go well!

E. Lane said...

Lots of prayers coming your way!






(Have you thought of making a facebook page? I recently saw a few of my facebook friends talking about Scarlett's story...)

cheyenne said...

hey brandi, i just wanted to say that when my mom got sick (and i know this is completly different) i put it all in a book, and later when she got better i shared it with her. i think that you are amazing with your words and that Scarlett would love to see how much you love her and how you were such a good mom to her down the line. this is a great idea, for all of us, for you and for your little girl ;)

-Cheyenne

Jennifer said...

I admire your strength...I am praying for your family...