Reflections and Congenital Heart Defect Awareness

Be sure to remember that February is Congenital Heart Defect (CHD) Awareness Month, and that February 7th-14th is CHD Awareness Week.

Lindsay wanted to share her thoughts, so please enjoy her beautiful words!
-Brian

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Lindsay here, writing and my maiden voyage blogging. Brian & I decided it would be a bit of a waste for the blog to come to an end when it has had so much following and support, and knowing we could certainly use it to continue to raise awareness on congenital heart defects (CHDs) as well as using it as a therapeutic outlet as we continue to heal from our loss. We are also looking into ways to turn the Delaney Rose Fund into something proactive, like a scholarship fund. So, we will do our best to continue to post, with our sweet Delaney continuing to be the influence of our writings.

It is hard to believe it has been 3 weeks since Delaney passed. In some ways it feels so long ago, yet in other ways the wound is so fresh and our hearts ache so much and it can feel like just yesterday. We have our good days and bad. Sometimes the bad days sneak out of nowhere and take us down - hard. We miss her beyond words and we probably always will. After the emotions come out, we try to keep in mind that she is no longer suffering or in pain, and that does give us some peace. All we ever wanted for her was a life filled with love & happiness, and we know she is getting an infinite amount of that in heaven as we continue to love and remember her here on earth.

In honor of Delaney, I want to remind you that February is heart month, and Feb. 7-14th is Congenital Heart Defect Awareness week. One in 100 babies will be born with a CHD and 100,000 of these babies worldwide will not make it to see their 1st birthday. It is the #1 birth defect worldwide & the #1 cause of birth defect related deaths. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. And sadly, there is a small amount of awareness about CHDs outside of the medical profession and the families affected (for more info, check out www.itsmyheart.org, www.marchofdimes.com, or www.congenitalheartdefects.com) So spread the word, support organizations that fund research and awareness (like the Katie Herb Foundation) and wear red in honor of the CHD warriors both here on earth and for those who fought hard & are now angels in heaven like Delaney.

I would also like to share with you the words I wrote for Delaney's funeral on January 19th. I had our pastor Randy read this for me, as that day was understandably difficult. I had many requests to post it to the blog, so here it is. Thank you, as always, for your continued love and support. B, L & {d}

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So, I wanted to speak today, but I didn’t think I’d be able to do it without losing it at some point. So please allow Randy to be my voice today. Also please note that I’m not as eloquent a writer as Brian, so bear with me…

Brian and I never thought we’d be sitting in this place when we welcomed Delaney into our lives last March. It seemed as though everything we ever wanted was falling perfectly into place, and then we got hit with a ton of bricks. Our lives literally became a 24/7 medical whirlwind almost overnight. Our hearts ached, but we persevered because Delaney persevered and because as a parent its just what you do. Other parents kept telling me how strong I was, but honestly I didn’t feel that way. I was mad, and really angry at God for allowing this to happen. There were a lot of “why’s”, especially “why her” and “why us”. As a mom, it got especially difficult seeing other moms with their kids. I wanted to be happy for them, and deep down I was, but I had a really hard time with it.

Then came the constant feeling of guilt. I was told by many that I’m human and I had no reason to feel guilty, but keep in mind I was raised Catholic, so the guilt is pretty ingrained and unavoidable. I felt guilty for being mad at God, for being jealous of happy families with healthy kids, and for resenting our situation. After all our sweet baby survived! She was still here. I should be grateful, right? But I wasn’t. And I’ll admit, there were many days that I hoped and prayed that God would take her. So then I felt guilty for that, especially over the last few days now that she has really gone to be with God. But I know that all those feelings stemmed for the deep amount of Love both Brian and I had and still have for Delaney. In fact, we chose the song “More” by Matthew West to play for her slide show because it felt so appropriate. Matthew West wrote the song as God telling us how much he love us, but I also feel it describes a parent’s love for their child.

A friend of mine told me he shed a lot of tears over our situation, but when he found out that she had passed he felt that she had completed her mission and he felt at peace. He added “Hopefully if you don’t feel that way now, you will soon”. Right now my heart hurts an indescribable and unspeakable pain. I knew losing her would be hard, but I never imagined it would feel like this. However, if it means we have to go through this pain so Delaney can be in a better place, a place of no pain, suffering, of pure joy and happiness, then so be it. I’d do just about anything to take her suffering away, and as much as I miss her and as much as my heart aches, knowing she is happy, laughing, and having fun doing all the things she couldn’t do here on earth, it makes the pain a little more tolerable.

I also think of all the things she taught Brian, me and so many others. She showed us how to be strong, even when things are tough and not going your way, the importance of patience, perseverance, and to never take anything, especially your health for granted. I’ve been told by many who have heard our story that they can never look at their kids in the same light. I know I haven’t been able to look at any child in the same way, and I know Brian and I will hold tight our future children and appreciate their every breath, smile, laugh and blink of their eyes. I think we will even appreciate their cries and tantrums…okay, maybe not their tantrums ;-), but my point is that a healthy child is truly a gift that we will never take for granted...ever

Most importantly she taught us about the importance of unconditional Love. For those of you who know Brian and I well, you know we are very loving, caring and affectionate people. Delaney definitely inherited that wonderful loving spirit. Anyone who met her immediately fell in love and despite her disabilities she could show her love undoubtedly with such ease & without even saying a word. Sometimes it was just the way she snuggled into your chest, sometimes it was her contented sighs, her sweet coos or that glimmer in her eyes. I know that is what we will miss the most is that sweet snuggly unconditional love. It makes my heart melt just thinking about it.

We may never know why this tragedy happened to her or us, but I've always believed that everything, good or bad, happens for a reason. Delaney taught us so many wonderful life lessons and touched so many lives in the short amount of time she was here on earth. Not many people can accomplish what she accomplished in 9months. What an amazing child we were blessed with.

A friend of the family shared this with me a couple days ago. She lost her son Eric 8 ½ years ago, and I know she feels our immense pain. Anyway, I thought this was quite appropriate and wanted to share this with you.

"These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you,
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part."
~Unknown

Sweet Delaney, we love you and miss you more than you can imagine. Shine on sweet baby girl and fly high, I know we will see you again some day…. Love, Mommy & Daddy