In December I started this blog with a letter filled with my fears and hopes for you. So much was unknown then. So many unanswered questions. I was ready to get going and face our future and just know. But at the same time I just wanted to stay where we were with you tucked safe inside me.
So much has happened since then.
So much has changed.
You have gone through so much.
We have gone through so much.
We've learned, and experienced, and grown, and fought, and won, and we have become a family.
On the 26th we will be bringing you to Loma Linda hospital for open heart surgery to give you a chance at life.
Part of me is ready to just get going and get the unknown over with the rest me wants to take you a run as far away as I can and keep you safe tucked up against me.
It feels like we are right back where we started last December.
Like our own version of "Groundhog Day" only without Bill Murry or quite so many punch lines (and a whole lot more Dr appointments!). But, we hope, with our own happy ending.
Even though it seems terrible to even write this it's so much worse now then it was back in then.
Then you where an idea, a few quick movements, fuzzy black and white image on 100's of ultra sounds, with a name and a beating heart but you weren't you. Not yet.
But now
You are you.
With your big deep dark chocolate brown eyes that already seem wise beyond your months. That crooked smile that radiates joy and makes all who come anywhere near it unable to resist falling in love with you. Your will. Your stubbornness (just like your Mama!). The way you already look at your brother like he's a superhero and the way your whole body dances with glee at the simplest of things.
And you, globally developmentally delayed you, in a room full of people all bustling around, poking at you, testing you, a mass of confusion and movement.
You look around taking each person in turn, till you come to me. Then you stop. Although you do not reach, you can not speak, you can not hear, and we are not even sure how well you can see. You stop, and the look on your face changes, and everyone sees that you recognized me. That you know I'm your Mama.
Of all the people there I'm the one you focus on and everyone in the room gives out an soft uncontrollable "awwwwww" and look back and forth between us and the love they see there.
It's so much worse now. The thought of losing you.
I have constant heartburn just thinking about it.
Not the kinda heartburn that you can treat with Tums. Not the kind that travels up your esophagus with spicy foods.
No this kind of heartburn is this constant ache and pressure on the heart. It fluctuates as thoughts pass. Sometimes the pain so intense it about bends you over and your heart literally burns, sometimes just a constant low heat.
I tried to explain the pain to your Dad once but it turns out I didn't have to. He already knew.
He's been feeling the same pain for a while now.
The other night I had just given you a bath and you were laying there all shiny and sweet. You were giggling in your breathless way as I blew raspberries on your belly and I as I looked at you I thought simply I can not do without you.
and I can't Mason.
In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life.
And once again your Dad and I will have one thought
One wish
One prayer
One hope
Just two words
Come home
That's it baby. That's all I ask.
Please just come home.
We can not do without you.
I can not do without you.
Tomorrow we will go to Loma Linda for your pre-op appointments. I think we will find out what time your surgery will be. I will update the blog tomorrow with any information I find out.
Till then my very talented, and lovely, friend Becki from Becki Cloud photography moved heaven and earth to do a family photo session for us the other week. I couldn't love them more, or be more grateful to her for the gift of these photos.
9 comments:
With tears streaming down my face, all I can do is feel your pain, a small glimpse of it, and want to hold you tight. I love you all so very much. Come Home sweet boy, my sweet dear boy that I have loved since one day old, who I will love forever.
I have tears in my eyes reading your beautiful words. I know the pain you describe all too well. My son, Jack, has CHARGE and is turning 5 in a few weeks. We have fought to keep him alive every single one of those days. I don't know if that pain will ever go away completely but I can tell you that it does get better as time goes on. I have thoughts, horrible thoughts of what my life would be like without him and I just can't bear it. That pain creeps back in for days. I'm glad to know it isn't just me.
Mason and your family will be in my prayers the next few weeks as he goes through his surgery and the recovery. Our children are stronger than anyone gives them credit for. They are the most amazing fighters and I know Mason is no exception.
Take comfort in knowing that your little man is stronger than you can imagine and that the man who will have Mason's heart in his hands is a master at what he does. Your post transported me back to May 11, 2010 - the date of Finley's 2nd open heart surgery. I so know that feeling you described. We couldn't have even imagined how much better off Finley would be after her surgery and she has truly been able to grow and thrive in ways we never thought possible. I will be thinking of you and sending you the strength you need to get through these next couple of days and pray that this is the last big hill you will have to climb for a long, long time. ((HUGS))
Oh Amy...my love, thoughts and prayers are with you all, my friend. I wish I could somehow help ease the pain you are going through and make everything better. You are so strong, and May has an amazing amount of strength, as we've seen in these last 7 months. He WILL make it! I know he will! He simply has to, period. Love you my friend. Big kisses and hugs to G, P and May.
Amy, my heart is tied up in knots for you and your beautiful family. My family is praying for you and I will out Mason on the prayer list again. I know Mason will not want to disappoint his Mama or Da, so he will fight hard to come through this, his brother is counting on him as well. Let me know if you need anything, and I mean anything. Give all your boys a kiss from me. Love, The McCarty family.
Friend... these thoughts are beautiful. Your love for Mason is so strong, so deep. Thank you for sharing.
While none of us can know your pain or the fear that rises in your heart, I can say with certainty that we are right alongside of you - praying, hoping, asking for Mason to come home. Believing that he will - and looking forward to that joyful day.
I am praying today that your sweet boy will come home - and come home stronger than ever, with a heart that's whole, with even more light in those beautiful eyes and with a bright hope for the future. Praying for you and George and Pierce as you ready yourself for the difficult days ahead.
If there's anything we can do, please call! I'd love to bring dinner by again - just keep us posted on your progress, and let me know when you guys are home.
Love you all!! xxx
Amy,
We will be praying for you and your sweet Mason in the next few days. You are such a wonderful writer and have such a great way of expressing your feelings. My heart was breaking with you as I was reading this letter to Mason. I wish I could reach through the computer and give you a hug! I love your family pictures! They are beautiful!
I can relate to what you so perfectly put into words. I look at Stephen & feel the same way. Like I thought I would die if he didn't make it through his first surgery, and if something happens during his second (God forbid) I KNOW I would. Oh Amy, we are praying for you and sending all the good vibes we can muster in your direction. Mason is a little fighter and for that he will come out on top, a champion. XOXO x's 1,000,000,000,000!! Hang in there Mama. I know you guys will do great!!
Gorgeous words Amy and so utterly poignant:
"In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life. "
You express the deepest feelings we heart mums can endure.
God bless and keep you all safe.
I feel utterly privileged to have held him greedily for so long.
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