Wednesday, June 23, 2010


Last summer we started talking about next year.
In the fall we wondered what the next nine months would bring.
In the winter we were told we had about six months to prepare.
At McKay's March appointment we were told to plan on July.
Today, we realized all that time was gone.
We are talking about days now.
Just 11 days to be exact.

All the preparations have been made.

My sweet boys will remain behind with friends and family. They are scheduled for fun day and night and will probably be disappointed the party is over when we come home. Let's hope so.

We're on the list for a room at two different Ronald McDonald houses in the Philadelphia area. You call the morning you hope to arrive to see if they have a room available. I usually like to plan a little further ahead than that, but we're learning this journey is all about going with the flow.

We think we've figured out the impossible process of getting a continuous flow oxygen concentrator onto a commercial flight. Lord please help us meet the right people to get us onto that flight without a hassle. I really might lose it for good if we have to fight that battle.

We've purchased a new rolling car seat designed to get Mr. McKay into and out of the plane and into and out of cabs without completely losing our minds trying to carry all of the bags and equipment he needs. He travels like a complete diva. That's okay-- because he is FAB. U. LOUS.

Now all I need to do is find the courage to hand my baby over again. Hand him over to a stranger who although well-pedigreed and unbelievably highly recommended, is still a stranger. He will literally open up my child before him and rely on experience to guide his decisions. Most of which we're told will occur on the fly. Because, of course, there is just no way to know what will work best until they are actually staring at the twisted miracle of McKay's unusual anatomy.

Damn it. I hate this part.

I hate it because I always shut down. I get quiet and bugged and self aware that I am not at all the person I prefer to be. So I try to fix it by not thinking about things. But there he is. All 29 pounds of soft, ticklish love. So I melt into a complete puddle almost daily and start the process again.

Of course not one ounce of this is about me at all. I am just a privileged ticket holder with a front row seat to McKay's journey. And he is happy. He is ready to be free of the cords that are holding him back. He is ready to give up cold, clammy, purple toes. He's ready to trade in arms that look like he's been dying jeans all morning long for something of a pinker hue. He's ready and so are we.

I hope our journey is more comical than it should be; our adventure more heroic than we deserve; and our child more watched over than we can imagine.

We have cheered from afar so many long-shot victories from our precious heart friends. And I'm ready to step up and claim one for my McKay.

I worry a full month between posts can get you get kicked out of the heart blog support group. If that's really true, I'm glad I've barely made the deadline back into your good graces. We need your advice, your inspiration, your I've been there done that, keep getting out of bed and loving your child sensibilities. We can do this because we have seen you do this. Thank you for telling your stories. It helps us write ours.



cici said...

God Bless and protect your sweet handsome boy.

Hope's Blog said...

Enjoy the next 11 days and love your little man all you can. I don't know when I will be in your shoes, but I know I will be feeling the same as you are. I will be sure to keep the prayers coming when you leave.

Jenny Lincoln said...

I'm sorry I have no advice to give (my daughter is due for her Fontan within the next 12 months)but I can offer my support and prayers to your family. This post was so beautifully written, I'm sitting here with tears in my eyes. Please keep us updated and know that we are out there thinking and praying for McKay, your family and his medical team.
heart hugs,
Jenny (mom to Aly- HLHS)

GG said...

Best of luck to all of you...know that you will be prayed for over and over...keep us posted so we know how your all doing...
Be safe..
All my love, Sharrona (GG)

The Butlers said...

So glad to see a post from you-such a busy woman! I will pray for you and your sweet McKay each night and hope you will feel the love and strength sent your way during this journey. Mindi, you and that baby are incredible. Keep the faith and march forward with your great attitude, love and passion and things will turn out well for you on this journey. Love you!

The Simmons Family said...

Oh, we'll be there!! It's going to be an "adventure". Do share all the oxygen drama and where did you find a carseat on wheels? I am flying (for the first time) with Owen to Stanford in October... just me. I'm pretty sure I'm going to fail miserably. HA.

Good Luck and keep us updated!

Connor my little frog said...

I am a flight attendant for skywest which is delta and united connection please let me know if I can help with the o2 problem or if you need to anything. I send my love and prayers

Ivy Murphy
Mom to Connor vsd,double inlet LV, TGA,hypoplastic RV

Kyle and Alli said...

Oh Mindi. You have such a way with words. And kicked out of the heart support group??!! Hah! Never. We think of you guys all of the time and I am so glad to hear that the preparations are done and now the dreaded waiting game has begun. Please know that many are praying for a smooth ride and hoping to hear comical tales of the flights and a new testimony of miracles as McKay embarks on this journey. Our hearts will be with you on this journey!

Christina C. said...

We'll be praying for you and little McKay these next few weeks! May it all go more smoothly, easily, and quickly than you could ever imagine! You and McKay are an inspiration to all of us.

Stefenie said...

Saying lots of prayers for his upcoming surgery! It is never easy handing our special kiddos over to strangers but we have learned that it is something we have no control over.

God will get you all through it!

yota_96 said...

Your story makes mine pale in comparison and maybe that is why even though I don't know you, I follow you and your amazing little man. We have been through 2 open heart surgeries with my son who is now 11 years old. Your thoughts about having to hand your precious child over brings tears to my eyes because it was no easier at 9 years than it was at 7 months. That moment was one of true, unprecedented and complete submission on my part to accept whatever whatever the Lord had in store for my sweet boy. Embrace the peace that our loving Heavenly Father will provide you with. The moment I saw my son right after his first surgery with too many tubes and lines attached to him to count is the only moment in my life where I have said, "Ok, what is the plan here? I can do it but please be here with me!" and truly meant what I said. It was a rare moment for me to admit that I had no control. But there was an amazing peace in settling into that knowledge. These precious heart babies are placed with very particular people - of that I have no doubt. You are no exception to this knowledge and I am humbled by your strength and the strength of those around you. McKay is such a special boy and I thank you for continuing to share your story. My prayers will be with you.
- Kami Wright

Christina said...

Mindi, if we have to post every month I am in big trouble! :) I always love your way with words. Please know that I am thinking of you and praying for your sweet family. If you need anything please let us know!

Hugs & Prayers,

Jenny said...

XOXOXO a milion times:). No advice to offer, just love and support.

Shelby said...

Good luck to you guys. Mr McKay will be in my thoughts and prayers and I will be annoyingly checking in with Stacey for any news. You are so strong Mindi and that is what he needs from his momma! Keep your positive outlook!

Patti said...

I know better than to read your posts while still at work and yet I continue to do it. People never understand the unexplainable tears.
We love you and your family. We know Heavenly Father knows you and knows the plan. Trust Him. Keep your faith in Him strong and firm. He will bless you through all of this. And I'll be sure to have a little talk with Him about it all too!
Much love.

Becca said...

I remember last August when they said that Ellie was ready for her surgery. I can't believe the roller coaster of emotions that we go through as heart moms. I also remember all the prayers that we felt to get us through. We will definately be praying for McKay and your family.


carolyn q said...

You have been on my mind knowing what is facing you. My thoughts and prayers continue to be with you on this upcoming journey. McKay is deserving for everything good to come his way.
Please let us know what we can do from afar to help.

Katie said...

Praying for you, your family and McKay... I'm sorry. We just had Maddie's appointment and were given the suspected "time" for Maddie's Fontan- cath next spring and surgery a year from now. It's so hard when you know what's in store. You're in my prayers...

On another note, we met Matt's brother at a family function a few weeks ago (he's dating my husband's cousin, Elisha). What a small world!!!

Hugs and hang in there Mindi!

likeschocolate said...

We will keep McKay in our prayers. Hugs from one heart mommy to another. Kelleyn

heidivee said...

And what a story it is. You guys are the most brave, incredible keepers of this most brave, incredible child. You are and will be in our thoughts and prayers. You are all FAB. U. LOUS.

Emily said...

Although I have no idea of the anxiety that you (and all these other amazing moms) are going through by being a Heart Mommy, I am praying for you and Matt and McKay. You truly are (and always have been) absolutely incredible! And those three boys you have sound like they are just as incredible as their Mom.

Lisanne said...

We love you guys and pray that angels will attend you every step of the way!

Kimberly said...

You are in our every prayer.

Ryan and Hilary said...

We will be praying and praying for your little man. We love you guys. Please keep us posted with the goings on. You are truly an inspiration. Just keep swimming, swimming swimming(sung by Dory) Good luck Mr. Mckay, you are our hero!

Sabrina said...

Mindi, everything is going to be fine, I promise you. and if you need more evidence, just take a spin over to our blog to see the latest photo of Luna. It's like it never happened.

on a practical note, what's going on with the o2 on the flight. I wrote an entire blog about it-and was able to get continuous flow for Luna.

let me know if you need help with that. actually, though I rented from here in NH, I'm sure they would ship you the tank, and trust me, the folks on Delta didn't get a darn.

so, please, don't let that worry you.

Kyle and Alli said...

Hey we are thinking about you this week!! Our prayers are with you that all is going well in Philly!