It is hard to believe that Addison has almost been gone for 6 weeks. I keep thinking about what my life would be like if things had turned out differently, and I actually was holding one of God's miracles. I know that everything happens for a reason and that I am special to have been given such a gift. I just wish that I was able to keep it for longer than 22 days. I know that I have never really lost her; she is with me all the time, and I see her in every beautiful flower and every child's laugh. She opened up a world of joy that I never knew was available. I miss her every moment of every day but know that she is in a better place, and one day I will get to hold her for eternity.
I would never change the fact that Addison had CDH. My life has changed for the better because of it. I now know who my true friends are and my family has grown exponentially. I have found out things about myself and Jason that I may have never had a reason to explore. God has shown himself to me in a way that I had never known was possible.
I am not mad or angry at God for taking my little girl back to heaven. I just want to make sure that her memory lives on through my actions and the actions of the other lives that she touched. I want to make sure that I let everyone know about her defect and how it affected my life and is continuing to affect 1 out of every 2500 pregnant women's lives. I want to protect other families from losing children to this defect. It seems like in the last 100 years the doctors would have at least pinpointed what causes this defect or a better treatment regimen to save the lives of these little innocent children. I think that we all need to unify for the one common cause of raising awareness for CDH and raising enough money to really make a difference in research. Every family that has been touched by this defect feels the same pain whether from the loss of a child or the long and ever extending road to wellness for the survivors.
Surgeon Appointment
1 year ago
8 comments:
FYI--CDH has not been a priority because (I think) until recently it was frequently undiagnosed prior to birth, and only when the baby failed to survive and was diagnosed post mortem. Now, with the advent of Level 2 or 3 ultrasounds, it is more frequently diagnosed prior to birth, and now we can be prepared for it i.e. go to tertiary care centers, where these babies even have a chance at survival. This is especially true for those babies who have larger defects. I realize that some are very small defects, and thus are not found except accidently, but those babies survive, anyway. The prenatal diagnosis is both good and bad--it makes the pregnance long and stressful, but it gives us a chance to give the baby a chance to live.
My deepest sympathies go out to you and to all the others whose children did not survive. It is so sad when children die.
Take care of yourself--in your efforts to bring this to the forefront of people's knowledge, you may find your way.
Jean (Sabrina's {LCDH survivor}gma-clearlyrandom.com)
Marion,
My heart goes out to you right now, in your time of need. I'm so sorry that I got to know you shortly after Addison's passing. But, in the time that I have emailed you and read your blog entries, you are one outstanding woman, who understands God's will and plan, as painful as it is sometimes. I am so happy to hear that you see Addison in each beautiful flower or child's laughter. That was a very meaningful statement. I will never ever understand your pain, and I pray to God that I never have to. The fact that my belly is growing larger every day, and I'm getting closer and closer to delivery, it's becoming all so real to Shawn and I that our battle is about to begin. I look at your strength, as well as Ashley's (Maxton's mommy), Kristi's (Kaden's Mommy) and Carla's (Joseph's Mommy) and I'm in awe at the grace of how y'all handled everything. (I know there are tons more mommies that I'm not mentioning, but they're always with me in my heart.)
It's so apparent that Addison touched so many lives, and she's in heaven with her beautiful wings watching after her family and other cdh babies currently fighting the fight, or who are about to. I know she'll be with Kamryn when her battle begins.
Hugs to you!!!
Stephanie,
Brooke and *Kamryn's Mommy
Marion-
Beautifully said. I know you prayed for Kaden every minute of every day--I did the same for Addison. It is so hard to understand the "why", but my head hurts from thinking about it. I don't know what we would have done without your love and support thru our journey with Kaden. I am sure I will need you more in the weeks to come. I am just trying to get thru these next few days.
I love the flowers....thank you so much for everything :)
Marion,
Not a day goes by that I don't think of your precious Addison. You are a amazing person for being there for others when they are about to start their CDH journey. God Bless you!
Marion, you're one of the strongest women I know. I am so sorry for your loss and quite glad Scott and I are getting to know you and Jason. I see good times ahead ...
I'm praying for you always, Marion.
Cannot wait to see you tomorrow!!!
Gosh, Marion, it's so wonderful how - although every CDH baby is different- you can put into words how all CDH Angel parents feel. What a blessing and a gift from God to have such understanding of this (which, as Kristi said, is exhausting in and of itself to think about) and, at the exact same time, you have the drive and fight to kick CDH's butt!! I love it and I'm right there with you, sister.
It was great to meet you and I can't wait to send you pictures (with permission of parents, of course) of Addison's crosses hanging on isolets of CDH babies at Children's Hospital of Birmingham. Of course, we'd love it if there wasn't another baby born with a diaphragmatic hernia and, thus, the crosses just hung on Christmas trees in rememberance of our Angels, but you and I know differently.
Look forward to talking with you soon!
Leigh Creekbaum
mom to Grayton RCDH diagnosed at birth 5/9/08 - 6/22/08
I keep praying for your family.
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