Sunday, April 25, 2010

Feelin' It

He is pure sunshine.

It's been a long while between posts. And a very long while since a really honest-to-goodness- this-is-how-it-is post. Today, I think I'm finally ready to record some truth.

The truth is that the last several weeks have been lived in a bit of a haze. Huge personal victories have been recorded. I finished the Boston Marathon. I accepted a dream position at work. I have wonderful kids who are accomplishing really extraordinary things. And all the while I have been living this blessed life from a distance. Sure, I laughed when things were funny. I shared honest thoughts and points of view when asked. But it's as if I've been hovering just above myself these past few weeks. Observing. Recording. But not really living the moment.

I didn't realize the depth of the cocoon I'd built for myself until I attended an exceptional luncheon yesterday. Put together by an amazing non-profit, Intermountain Healing Hearts, the gathering was focused on honoring "heart moms."
A few of the Heart Moms of IHH celebrating our kids and sharing our lives.
It should be noted here that I was reluctant to join a group with a label such as this immediately after McKay was born. Me? Be part of them? Surely my baby was different. Surely we would not be regulars at the hospital the way these mothers were. Knowing all the nurses. Giving directions to other families who were clearly lost in the hallways. Nope. The thought of it seemed absurd.

But then it got pretty lonely pretty quickly. It wasn't that I didn't have amazing friends and family. It's just that I didn't have anyone who just knew. Who just knew how crappy it felt to have to force meds into tiny, pursed lips. Who had lived through weeks of sleepless nights worried about oxygen tubes and feeding tubes wrapping their way around little limbs and necks. Who took a deep breath every morning while still lying in bed trying to muster the courage to see if your baby made it through the night. Who knew the isolation of closing off the world every November knowing you could not emerge as a complete family again until the next spring. You know, people who just know.

So just a few months after McKay's Glenn operation, I reached out and felt comforted by the sisterhood of IHH.

It was at this amazing luncheon yesterday, listening to the speakers, taking in the music, that I realized I have been numb for a while now. I have chalked up my lack of blogging, lack of keeping a careful record of the past few months, to time. I was busy. But as I began to feel my guard lowered in the conversation and hugs of yesterday afternoon I realized that we all have the same 24 hours we've always had. I was choosing not to feel things in my life. I was not strong, I was absent.

McKay will have a heart cath tomorrow morning. He's been slipping. He's blue. Some days, really blue. Sometimes we have to get him into the shower and warm him up with hot water and aggressive massage. He's not fine. Sure he's tough. And he's happy. But he's not fine.

He wants to run and chase and be with his brothers. It's a scene that makes you smile so hard as a mother you think your heart will burst. And it lasts all of about 10 minutes. Then McKay drops to his knees. Struggles to keep playing. Then he gives you that look--I'm tired, mom. And the magic evaporates.

Instead of realizing the situation for what it is, instead of feeling my way through all of the emotions, I've tried to control it. "How's McKay?" "He's fine." I've even confessed to Matt that sometimes I feel like I need to distance myself from our little Macaroon. Maybe if I tried, I could stop loving him so much. I could give him just enough love to thrive, but not enough to hurt me so much on the bad days. That's an ugly confession. But it's real. Your mind tries to save your heart in strange ways when things aren't perfect. Fortunately, it's impossible not to love your children irrationally and uncontrollably; especially when they need you most.

So I sobbed yesterday. In public. Among other mothers who didn't ask why. And then I got angry. I was angry with myself for allowing my heart to withdraw to safe places where no real living goes on at all. Life is here. I have one shot at getting it right. And I want to feel every inch of all it has to offer.

So tomorrow is going to be hard. I know that. They have asked to keep McKay overnight this time. That's new. They've never planned to have him stay. Maybe it's that he's more unstable now? Maybe it's that they expect to find a lot wrong? And maybe it's just that he's so stinkin' cute they want to bask in his smile a while longer. Yep, that's probably it. The doctors try to shelter you sometimes from their own concerns--funny, because it only makes you worry more.

So we'll make it through starving McKay through the night and until 11 tomorrow morning. And we'll ask a hundred questions and remember one or two answers. That's just how these things go.

I'll probably eat too much and run at irrational times of the day this week. I'll likely snap at Matt and pack the diaper bag full of things I know we won't need. That's just how these things go.

But mostly, I will try to be in the moment, not merely observing it. I will try to be with my child, not just standing next to him. Because if I choose to shut it off, to protect myself, McKay might as well be with anyone else in the world at that point. And we all know little boys need their mommas. Tomorrow I will be his.

Reader's corner. McKay loves books. And I love that!

Please say a little prayer for our big guy. He will be brave. The doctors will be expert. And all will be well. But just the same, we'd love to have your strength in his corner.


The Simmons Family said...

Thanks for the honesty!!! We'll be praying for McKay tomorrow! I know how aweful it is to send them to the cath lab... blue.. slipping.. and we always get a one way pass to ICU for the night. It stinks.

We're praying for a good outcome and positive results.

Congrats on the new job and the Marathon!!! WOW!!

Andrea :)

Shelby said...

Oh Mind- you have a way with words girl. I will keep sweet little Mac in my prayers and get updates from Stace. He's such a strong little boy! Keep your chin up- you're a great momma!

Lisanne said...

You are so sweet! We will for sure keep him in our prayers!

Way to go on the Marathon and your new dream job, you are amazing!!

Patti said...

You were missed today, but it's understandable. We love you, we love your family- and our hearts reach out to touch yours with love and concern. We will offer a prayer on Mackay's behalf that all will be well, and we will offer another for his parents that they will be blessed also.
You'll have to tell us about the new position and also how fun the marathon was next time we see you.

Melissa said...

Good luck with the cath. Let us know how it all goes! It was great to see you at the luncheon!

Stefenie said...

I can totally relate to what you are saying about "retreating" to that safe place. I've been there but I too have learned along the way that I need to stop doing that and be there 100% even when it hurts so much.

The love that we feel for our kids can overcome our fear if we let it.

Sending up many prayers for all of you.


Whitney said...

Hey you. We are cheering, praying for and loving McKay tomorrow and beyond. XOXO W, B, C & G

The Butlers said...

I can't even imagine the stress, emotion and 'haze' you must feel at times. I am still so very proud of your promotion at work! And for running that incredible marathon!

I am so glad you have a group of heart moms who know what you are going through. Hang in there and give McKay a big hug and kiss from us. I will send a little prayer his way tonight and tomorrow. Much love to you and your family.

Marshelle :)

Connor my little frog said...

Sending our love and prayers always

GG said...

Wow...I have asked Marshelle so many is Mindi?,not like her to not blog and share...
So glad to hear from you and can only imagine what you live through each day...McKay is such a beautiful child... we will pray for you and your family...
I check on you every are so great at all you do...Congrats on the Marathon and your new job at OC Tanner....we wish you and your family the very best.

carolyn q said...

What a beautiful post. I am glad that you were able to be in attendance and open yourself up to feeling. I think as a heart mom that is so hard, a way of protecting your own heart.
I think Margaret said many inspired things that needed to be said and those in attendance needed to open their hearts and ears to hear.
Congrats on the Marathon and the new position.
I will be praying for McKay and your family as he undergoes that Cath.

Staci said...

I am glad that you are saying these things out loud. Give yourself credit, we all have moments when we retreat and think that we are making things easier for everyone. We all hope that we are just going crazy and that our children are really "fine". I am so glad you found comfort in the others that "know", I hope that you continue to find comfort from all of us heart moms. Putting your emotions out there for us to read isn't a weakness, we all want to give you our love and prayers, just let us! I'll be thinking of you tomorrow, please let us know how it goes.

Staci (angel Bridger's mom)

Kyle and Alli said...

Oh Mindi. One of the highlights of my yesterday was getting to meet you in person and tell you that I absolutely think you are incredible. The feelings you have expressed are so real and so true. The reality of the dark days makes me want to run and hide some days. We will be in Mac's corner tomorrow, mustering all of the fight we can give from afar and pleading with powers on high to offer extra help. Please update if you can and know that we are ready and willing to help however we can.


Terry said...

Mindi, I don't even know you really, but my heart aches for you. I hope everything goes well for you tomorrow and that somewhere, somehow, you find what you need to get you through this. I will say a little prayer for you both.

The INCREDIBLE Pettit's said...

It was so fun to see you yesterday and get to visit! I truly did know how much McKay is struggling, I figured no news was good news. I'm so sorry for how you have been feeling, even if you don't want to blog to the whole world, you can always call me! Good Luck tomorrow, we will be praying for our little friend!

Hope's Blog said...

We'll be praying for McKay today. We had to stay two nights for Hope's cath and probably the next one as well. Praying that McKay has a good day and is home tomorrow.

Anonymous said...

Thanks for the great post. However, I don't know how you can say you haven't been strong. You impress me every time with your strength. I will be thinking and praying for your family.
I'd love to hear more about the marathon and your promotion. Congrats.

Dianne Hauet said...

I hope things go well for you, your family and McKay. He is one tough little dude. How fun it is to know that he can make you smile even though he is going through some rough times of his own. He is such a special little angel. Congrats on the job promotion as well as running Boston. You are such a strong person!!! Hang in there. : )

michele.sobek said...

You have all our prayers. I have had the same thoughts of distancing
from Rob when he had his surgery at less than a month old, so I know where you are coming from. Rob is now 21 and we are close.
Congratulations on the job promotion and your run! Mindi, we love you and your wonderful family. Please keep ups updated.

Christina said...

It was so great so see and hug you Saturday. Know that I am praying for McKay today and hoping for answers to what is going on. Being a heart mom is hard. I know you will be blessed with the strength you need to help your family and handle all this medical craziness!

Love, Hugs & Prayers,