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Wednesday, June 16, 2010

Pray for Baby Matilda

Tonight I went to the monthly meeting of Hopeful Hearts at Loma Linda, a support group for heart parents. It was started by my friend Shannon and her friend Camille some time ago, and I was excited to attend my first meeting! There were some people there who had been coming for a while, and some who came fresh from upstairs because they saw a flyer. During introductions you could see the need for some parents to just talk... they had been thrown into this elite club that no one exactly signs up for, and not given an instruction manual. They wanted to share their story, the timeline of events, and cry. We had a short time of that, then a guest speaker give a presentation on an organization that helps arrange services for Special Needs kids (wow, they actually help you here in California?!?!).

As the meeting wrapped up, we spoke to a guy, probably a little younger than me, who came down from upstairs. His girlfriend stayed up to feed their baby girl, Matilda. Their baby was born on 6-10-10 and diagnosed shortly after birth with Tetralogy of Fallot, a once recently fatal heart condition that over the past few decades has turned into a legendary repair. He had so many questions, and was a broken man. His baby girl was sick, and he has no clue what the future holds, and he was scared about tomorrow which will be her repair surgery for her ToF. Not only is having your first baby scary enough, he was facing this as well. We spoke a little about what they have faced the past week and extended our support. He left, but came back with his precious girlfriend. These people were definitely people that needed to be around others who have survived their babies going through heart surgery. His girlfriend was a mess, so nervous for tomorrow, so nervous for the future, so where I was when Gabriella was unexpectedly diagnosed 13 months ago. After talking for a little while with them, a nurse who does the teaching on the floor and we met when Gabriella was admitted suggested we all pray together, so we did. Thats one thing I LOVE about Loma Linda, is no one is afraid of offending anyone by offering prayer.

We exchanged some more conversation and support and again I offered up my assistance since we are staying SO close to the hospital. Before we parted ways, she asked me if I would be there tomorrow with them as they waited for Matilda to get out of surgery. She said she felt a strength from me and could use having someone there that had been through something similar as they will be. It was an honor to be asked, and these kinds of moments remind me WHY God put me through what He did as a heart mom. I desire so deeply to give back and be involved- to use our experience for Gods work.

So tomorrow, that is where I will proudly be. Matilda will be going into surgery around 12 noon PST and her parents will be nervously waiting for that confirmation that she is done with surgery... something we did exactly one month prior on May 17th. PLEASE be in prayer, and that was the last thing her mom asked us all to do... just pray. Whether it be heart transplant or heart surgery, baby or child.... it is never easy to watch your precious one suffer and wonder if they will live to fulfill the dreams you had for them. I hope to be a comfort to them just as Shannon was to me last month as she sat with us before transplant- something I doubt she realizes impacted my experience profoundly.

Matilda's dad noticed a quote at the Ronald McDonald House that he said before he would have thought was hokey, before his life was thrown into perspective... Such simple words, but it is amazing how deep they can run when you are faced with the possibility of losing your child.

"Every day is a gift"


The Mason Family said...

Kristi...I LOVE YOU!! You are such an amazing woman and I'm so proud to call you my friend. Lisa knew what she was talking about when she said you have a 'strength' about you; you are a very strong person!

And it was an honor for ME to be by your side in the hours before G's transplant, I was so glad that I could be there with you guys. Having to say goodbye to your child just before open heart surgery is such a scary moment in your life, with all the "what ifs" running through your brain, that having someone there with you who KNOWS what you are feeling, is exactly what I wished I had. (BTW, you made me cry!) I LOVE YOU FRIEND!

Comfypjs said...

Ok, the comment window turned up under the other windows I had open. So I'm a dork! My comment is pasted below....

I knew that God would use you in this special way to help others in the same situation! Praise God for your willingness to serve!
2 Corinthians 1:3,4
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God!

Anonymous said...

WOW, So glad they have a group were people can get help. Your Blog is so inspiring. I will be praying for that family and yours. I work in Labor and delivery and have seen many infant that are ill with heart are other defects. I feel so bad for the parents. Never should we have to fear the death of are children but too many times we do. Glad you will be there to hold their hand and pray. Bless your heart for wanting to help others. We need more people like you. Brenda Unzen MN

Angies Support Team said...

WoW! That is awesome! Isn't it so encouraging to hear that your faith and strength is being shown! Like you know that you're strong but others telling you just makes you feel good! You are very strong! I am not a mom and no where close to being one within the next 8 years. But my little sisters are my entire world and I would be locked in my room crying on my bed for at least a month, if they ever got sick. (That is why I was happy it was me and not them!) I quoted you a bit in my testimony! ;) you said in a few posts ago that yes Gabriella has a second chance at life, but with a cost. (I pray that cost will go away!) But I liked it and used it. I didn't give you credit tho... So I am now! :) How did Matilda's surgery go?

Julie Kuchar said...

I just want you and your family to know I am so relieved that Gabriella's surgery has gone so well...the amazing faith, hope, and courage you all have had and continue to exhibit is truly incredible and inspiring..Gabriella is so strong and brave...I will continue to keep you all in my prayers as this journey continues...God bless you all..