I found a manila envelope in the mail this afternoon with an MUSC sticker in the return address. I knew what it was, but I just couldn’t bring myself to open it. Maybe if I ignored it, it would go away.
Of course it didn’t, so I opened it tonight after dinner.
Dear Mr. and Mrs. Pennington:
This letter is to inform you that arrangements have been made for your child’s heart surgery at the Medical University of South Carolina by Dr. Scott Bradley…
The surgery has been scheduled for Mary Clare on 03/09/11…
I received the phone call last week so it’s no surprise. Last week, the call was a shock. Tonight, not so much as a quiet reminder. I’ve thought about it every day since receiving the phone call.
I wonder if I’ll think of it every day until surgery?
Mel and I both were so thankful to know of her special heart before she was born, but this time is different. I know Mary Clare. I didn’t know her then. I didn’t know that she would have little, blonde braids, a huge, sweet-tooth and say, “Torrible” instead of terrible or horrible. I didn’t know that her favorite food, second only to chocolate, would be “flat cheese” folded twice into a perfect square stack. I had no idea that she would love her green paci, even at 3 1/2, and drink juice all throughout the night and emulate her big sister. Or that she could walk into a room and consume everyone’s attention by doing nothing, and that her favorite outfit would be a pink dance leotard and “Fuzzy Uggs.” I’m sure I didn’t realize that she would completely frustrate me one moment and melt me the next with her little blue hands hugging me and giving me her “kitty cat head rub” against my cheek.
I hadn’t explained her half-heart a thousands times, or tried to explain how it actually works. I hadn’t defended her physical weaknesses. I hadn’t bragged about her her beautiful, blue lips and scars. I hadn’t held her countless nights as she slept, hoping and praying that she lived until the next day. I had yet to experience what it truly meant to be her mother.
I’m not sure what to expect this time. I know it will be different. Until then, I’ll try not to count down the days. I’ll keep on fussing about her little spunky attitude and sassy mouth (and secretly loving it). I’ll keep hugging and kissing my blueberry everyday. We’ll have lots of fun and busy weeks until March and it may cross my mind often, this third surgery of hers.
I may not be ready now or even in March, for that matter, but one thing that I know is certain, I will thank God everyday for every moment we spend with Mary Clare.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
–Reinhold Niebuhr/William Spence
11 Comments
Terri Woodham on November 5th, 2010
Right now my heart is about to burst! I want to cry, but that will not help matters and Kerri DOES not need a weeping mom-I need to support her and Mel however I can. I,too, have dreaded the day when the date would be set, but like my courageous daughter has always said-“she has to have this operation to survive”. I know this, but why did this have to happen to her? Only God knows in His all powerful wisdom. I need to thank God for this wonderful little girl and the lessons He had taught me through her-not cry about how I’m dreading this.
Kerri and I visited little Emerson May (MUSC) on
Wednesday. She has had the Fontan-hopefully, the last of these operations. It is amazing to see how courageou her family has been and Emerson’s will to be a normal little girl. I’m so happy they have invited me to share this “journey” with this special little girl. She has given me the will to be strong for my family!
Thank you to all these brave children who have taught me the meaning of life.
erica may on November 5th, 2010
Kerri,
I know exactly how you feel! We are sitting at the hospital on day 19 after Emerson’s Fontan and I am here to tell you that you WILL make it through this! There are going to be tough days, but these little girls are so strong! They are sassy for a reason 🙂 We will be here to help you all through this! Love to you all! Thanks so much for you and your mom visiting us the other day! It was great to see you both!
andrea riojas on November 5th, 2010
I thought I loved my little girl before she was born, but you’re right every day you love them more and more. I enjoy reading about your journey as my little one (HLHS) is 18 months old.
I will be praying for your family as you approach March.
Hugs to your family!
katieall on November 5th, 2010
Kerri,
I teared up reading this post…it just makes it so real doesn’t it. Thanks for sharing the Serenity Prayer and the quote. Beautiful. I guess I never thought of how fitting the Serenity Prayer is to our situation. I need to pray this one daily…
Thinking of you, your sweet girl and our upcoming surgeries daily as well. I don’t know how it ever really can leave our minds until it’s over. God’s blessings to you all…
Love and heart hugs,
Katie & Maddie
Rebecca on November 6th, 2010
Friend, I’ve been praying for that date since Erica shared it with me the other week. I think y’all had just spoken when I called. We will continue to pray…as we always do for your precious baby girl…and especially for you and Mel & your amazing family as you journey towards this next step. It’s never fair but HE is always faithful!
Love you so much~ Rebecca
Walter and Judy Brown on November 7th, 2010
Dear Kerri,
You are such an awesome Mom to your wonderful girls. I know these next few months will be the most trying ones yet. However, your faith in our precious saviour, Jesus, is so strong. Just keep on trusting Him and crawling into his loving arms for strength and peace. You and Mel and McCanless and Mary Clare have countless friends who are and will be lifting you all up in prayer.
Thank you for sharing your experiences with us. Our hearts are with you.
In His love,
Judy
Mimi and Bapa on November 7th, 2010
Kerri and Mel,
I read this on Annabelle’s site, one of your heart friends, a while back and I read it regularly with you in mind. God placed these precious children with strong, loving parents for a reason. It is amazing how much we learn from these precious little children.
Being with you all last week was such fun and I don’t realize all you are going through as you laugh and smile and keep your positive glow. Then I fell apart when I read your blog and feel what is going on inside you. Bapa and I are there for you all and love you so much.
“The Day I Became a Heart Mother”
One day my world came crashing down.
I’ll never be the same.
They told me that my child was sick.
I thought, “Am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.
I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!
Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.
When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings.
I run to my child’s bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.
And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she’s here
but my heart begs, “PLEASE let her stay”!
From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will she be alright”? to watching her reach out her hands.
With every smile my heart just melts, despite life’s harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to her beautiful heart).
God must have known how much I’d love her (Just as He loved her from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven
Our hearts share in all of your tears.
Every day I will try and remember
I was chosen for her (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.
– Author Unknown
cgriggs58 on November 9th, 2010
Kerri: You are such a special person. I just cried when I read this. I had a sister who was born with heart problems. They thought it was just a hole in her heart and repaired it when she was 18 months old. She went back for her five year check up at MUSC and they told her that the artery from her heart to her lung had never grew and the only thing they could do was a complete heart and lung transplant. She was such a fighter. We always had to take up for her because of her blue lips and fingers too. The doctors told my Mom and Dad that she would not live past hear early 20s. She fooled them. In her early 20s she went to a Dr. at Mayo and she put a shunt it. It helped her to live until she was 36. She was and awesome person. Your Mary Clare reminds me so much of her. She was spunky and sassy too. God bless you and your family. You will always be in my prayers. My sister’s name was Martha. Love, Cindy Griggs
Carol Spears on November 9th, 2010
I’ve been following your blog for a while now. My son, Cash, has HLHS too. I am writing to you because I remember how before his Fontan I was constantly looking for positive articles and stories about other children who had the Fontan and were doing good. My son had his Fontan on June 24th of this year at Arkansas Children’s Hospital. This is where he’s had all three surgeries. Anyway, he did real well with his Fontan and hospital stay. His surgery was on the 24th and he was dismissed on July 3rd. I, like you, remember that feeling when my husband told me that the hospital had called with surgery dates. I think I cried all weekend. But, then I realized that he had to have it done. I know it’s easy for me to say this now, but it is such a relief when this surgery is over. We don’t have a website for him, but he does have a carepage if you would like to read more about how his Fontan went. It is under CashSpears. I’ll keep your daughter in my prayers. I know she’ll be just fine. God Bless You!
John A. on November 12th, 2010
We found out our son, Cooper, had HLHS two weeks after he was born back in March. I immediately began scouring the internet for any information I could find to give me some encouragement about his prognosis. There’s a lot of sad and disheartening stuff out there, so I was happy to discover your blog. I read Mary Clare’s story, and have checked in from time to time over the past several months. Mary Clare’s progress has always encouraged me when thinking about Cooper’s future.
Seeing that Mary Clare is now scheduled for the Fontan, I can well imagine what you’re going through. I just wanted to drop a quick “thank you” for keeping this blog going and to let you know there’s one more HLHS family out there pulling for Mary Clare.
Jenny Lincoln on November 5th, 2010
Oh wow- they really schedule in advance, don’t they? Which, in itself, is a double edge sword- easier to plan, but like you said, that’s a long time to think about it everyday. Your post has me in tears. These are my thoughts about the Fontan with my daughter also. I’m sure this one is going to be emotionally harder on us as parents but our girls are going to do wonderfully and then, just think, that’s IT. No more surgery looming just beyond our reach. It’s going to be a good feeling.
(((((HUGS)))))