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Sunday, February 14, 2010

Thoughts on the waiting list...

February 11... I will never forget the date. Not only because it is my little sisters birthday... but also because that was the day Gabriella's new heart journey started. It came exactly 9 months, almost to the hour, from when we sat in that small room at the cardiology office and were told Gabriella needed a new heart- May 11, 2009. We were dealt setbacks with needing air transportation in August, Gabriella's stroke in September and months thereafter of recovery from the stroke. But finally, the day we once feared but now are ecstatic for, came.

In the early weeks of finding out she needed a new heart, her doctor told us Gabriella would have, potentially, a maximum of 5 years before this condition would take her life. He said it with much caution, as no one knew what to expect of this condition that children just do not get. Everyday we wait is a day closer to loosing her... it is just that no human knows how many of those waiting days there are. As these more recent visits have gone, I see Dr. Alhadheri's doubts in having 4 more years visual on his face.

We had so much fear in August, when we went for our intake visit to Loma Linda. It was still such a hard concept for us, with Gabriella being so visually healthy. To think of the surgery and the severity of what we were putting her through, we just couldn't be 100% at peace with it all. When she had her stroke in September, and were given a visual experience of how unhealthy she really was, we were given a wake-up call. These months of recovery and waiting, and watching her get worse, put us in a position this past week to go to Loma Linda for listing with excitement and joy.

The only way to ensure Gabriella gets to start school, experience recess, face peer pressure, win a competition, learn to drive, dye her hair odd colors, go to prom, graduate from high school, choose a career and pursue it, meet her soul mate, have or adopt babies... or even change the world- she needs a new heart.

In the very same way, another child will not.

It is impossible to have a single moment rejoicing in the memories yet to come without grieving in the moments another mother will not have. My heart is so full of excitement and happiness and in the same moment compassion for another woman out there I don't know yet. It is something I will never be able to explain, not on my blog or in person. It is a feeling that is just a feeling, and one that is only shared among others who have actually experienced it.

The most important thing to remember is that a child will not loose their life SO THAT Gabriella can live. Gabriella will live BECAUSE a child had to loose their life. It is all part of God's divine plan. Which to me means, it is okay to pray for Gabriella's new heart. It does not mean you are praying the death of another child. I find it my best advice to pray for God's timing and ultimate design. That, if another child does have to loose their life, that their gift can be forever shared and displayed in the life Gabriella lives. That the mother, father and family of the child who gives this gift can find peace and comfort, if in nothing else, that they spared another parent of that pain.

The day we get the call for Gabriella's new 'sparkly heart' will be a day our family expands. Whether or not we ever meet the donor family, they will be forever a part of ours and my debt to them can never be repaid. I will make it my focus in life to make sure Gabriella always understands the gift like no other she received.

I asked a friend of mine if she would like to write something, to share the 'other side of the story'. I have been blessed to know her, and know that God put her in my life for a reason. Here is what she shared for all of you to read.....

My name is Lara and I am a friend of Kristi. I am constantly amazed how people come into your life for a reason. I worked with Kristi for a very short amount of time, but became great friends. I am also a mother of a child that has gone home to Jesus. Her name is Avery and I now have my very own Guardian Angel. As a mother, we all want the very best for our children and the thought of losing one is nearly unbearable for us all. Trust me, it is. the loss and over time, you become aware that your life becomes an example for others that are going through similar situations or hardships. For me, I have been blessed with Kristi and Gabriella. I unfortunately was not able to donate any organs of my precious Avery, due to severe internal injuries. BUT... I WOULD HAVE! I truly believe that the greatest blessing a grieving mother could get, would be the knowledge that your child saved someone else. What an amazing gift!!! The loss of your child will not go away and your gift will not bring her back, but I would never, ever, ever wish the pain of a lost child on my very worst enemy. What a wonderful feeling to know that you have spared another family that pain. God has a day and time for us all. Unfortunately, some are taken away before we believe they should be. But some, a very few, need help from another special angel so that they may live life until their time comes. Much love to you all.


cici said...

Happy Valentines to you and little Gabriella. That was a beautiful heartfelt post.
May God Bless you with peace and comfort in your waiting hours and the other unknown family in their final hours of sorrow.

Suzy said...

This is the most moving blog post I have ever read- both Kristi, and Lara- you are amazing and strong women. I will be thinking about you both and the journey you're both on. Kristi, you're attitude is incredible and you're a huge inspiration to me always. Love you. xxx

Angies Support Team said...

Absolutly Beautiful!

Amiee said...

Hi Kristi,
I have been reading your blog for months! I found you the same way, I was looking for other families that get it!

You daughter is BEAUTIFUL! I pray for her daily and I can't wait to read the post that says her new heart is on the way to her.

Many Heart Hugs!

Anonymous said...

Your blog is amazing . What an amazing friendship you have and an amazing woman you both are ! My best friend lost her son to SIDS . And one thing she said she wished she could have done was donate his organs. I am so glad your daughter is getting her new sparkly heart .