That’s really never good.
You see, I have one week left to make Jena’s wish come true and I just don’t know how I’m going to do that. Since she was a little girl, Jena was confident that there would be a cure for CF by the time she was 16.
On March 13, 2010 at 11:02pm, she would have turned 17.
17.
That’s after 16.
Time ran out.
Again.
Breakdown time.
I just don’t know if I can live with letting her down again. I couldn’t save her from the disease that took her life. I couldn’t leave this earth with her either. And now I can’t make CF stand for Cure Found no matter how hard I try.
Her brother still fights daily to breathe and still there is no cure. Sometimes I think all the CF fund raising I do, and all the public speaking I do at CF events, and all the damn CF awareness I do is just in vain.
The researchers discovered the gene back in 1989. In 1991 when Eric was diagnosed, the doctors told me, “Just give us 10 years and CF will be a thing of the past.” Ha! I gave them way more and CF still smoldered the flame of one of God’s most magnificent lights.
I’m a failure as her mother.
Her birthday is next week and I don’t want to be anywhere near home. Her girlfriends will most likely drive themselves to her cemetery and sing her happy birthday and probably bring her balloons. They’ll laugh and cry and think about their special friend that changed them forever.
Our local church will have a beautiful mass said for her that day. Our family and friends will gather together and pray for her soul. Their hearts will be filled with love and sorrow.
Me?
I want to do something Jena-special. I want to do something she would think was cool. I want to do something that has purpose, meaning, and is full of love because that is where she is.
God gave me a moment’s grace and sent me an email:
Save the Date ShamRockin, March 13th
I am a member of the Planning Committee for Shamrockin’ For A Cure 2010 – a huge party at Verizon Wireless Amphitheater coming up this March in Atlanta. For the cost of a night out you get dinner, drinks, live entertainment and the knowledge that you are contributing to the Cystic Fibrosis Foundation...
Save the date? Yeah, I think I can do that.
Drink? Hell yeah!
The emotional cost though is too high.
Still, Marc and I will be flying to Atlanta to be with wonderful friends that care so much, to do whatever they can, to make a difference in the lives of those battling cystic fibrosis. They have no other reason to be involved other than that their hearts were touched by our family and they wanted us to know that Jena’s life, Eric’s life, and my constant fight against CF is not in vain.
Call it coincidence, but I have long given up on that…I call it God’s grace intervening yet again.
I’m a mess, that’s nothing new. I cry, I breakdown, I curse that I’m still alive. Then I think of how hard Jena fought for each breath and how she smiled in extraordinary circumstances.
So where will I be at 11:02pm on Saturday, March 13, 2010?
In Atlanta, laughing with amazing friends, sharing a few tears, raising funds and awareness for CF but most of all, I’ll be toasting one of God’s greatest angels, my beautiful daughter…
Jena Marie Cassalina
“Happy Birthday, baby girl.
I love you more than words can say…
I love you more and more each day.”
I love you more and more each day.”
Xoxoxo
Mommy
Mommy
Posts
Margarete,
ReplyDeleteI am sure you hear this a lot but, you are a beautiful person inside as well as out. You are the farthest thing from a failure, you are one person that can only do so much. So much that you have gone above and beyond what any one person can take on, especially with such heaviness on your heart. I think that you are amazing in every which way and brighten everyones day that you come in passing with. Jena is looking down on you so proud and so happy that you are her Mom, and you always will be her Mom. Dont be sad, be proud of the daughter you brought into this world and the stories you have to tell about her.
My heart breaks for you Margarete! I recently finished your book sitting with a box of tissues. Simply amazing!
ReplyDeleteIf you would, please add Teacher to your bio at the top of this page because you may not realize it, but you taught Jena how to live life to its fullest, and you taught me and all who come in contact with you how to parent a child with CF, and finally, how to live with grief.
My 15 year old son has CF. You and I met briefly in NYC at a CF award ceremony, shortly after you lost Jena. I was incredibly moved by how encouraging you were to me about the what promise the future holds for my son. See, teaching others even then.
Never forget, your life has great meaning, as you gave life to an angel.
All my best,
Noreen
Thank you Joanna. I am proud of my kids...the one you can see and the one you can't.
ReplyDelete;)
Margarete...you are certainly not a failure as a mom. YOU are the most wonderful, inspiring person I've ever had the grace and opportunity to meet! Stay strong and keep that love in your heart.
ReplyDeleteNoreen,
ReplyDeleteYes-I remember you! How is your son doing? Teaching...no, I don't think so. I'm still trying to figure it all out. When I do, you'll be the first to know!
Thank you for your kind words.
In Heaven, Jena is still 13.....you have time.
ReplyDelete~Sherry Hicks
More than anyone that I know you have your heart out there in the world for this cause and it is making a difference indeed. You touch so many with your feelings and words all of which has value. Value yourself, praise yourself, forgive yourself; those of us who know you do.
ReplyDeleteBob Auchincloss
Margaret, You have moved me beyond words. Thank you for sharing your story and motivating so many people to action. CF WILL stand for Cure Found. It will.
ReplyDeleteI'm glad you've given yourself a moment to be sad. Some people don't and it shows your strength. When you are ready, keep fighting.
ReplyDeleteYOU DID NOT FAIL. You will always be a great mother to all of your children and Jena loves you. My mom lost my sister at 16 and raised me through all of that. I'm almost 31 and I attribute a lot of who I am to my amazing mother who, just like you, kept fighting.
YOU ARE AWESOME!
Lots of love and Peaceful Things,
Josh
I'm sure that Jena would not consider you a failure as a mother. I'm sure she loved you enough to realize that you are only human and as such can only do what you can do. And the fact that there is no cure, is not your fault. You've been doing your part to the best of your ability. And that's all anyone can ask.
ReplyDeleteI'm so glad that you have something wonderful and life affirming to do for her birthday. I'm quite sure she wouldn't want you to sit around crying. She doesn't seem to have been that kind of girl.
You are a constant inspiration Margarete. Never doubt that you are influencing others for the better.
♥Spot
Dear Margaret-
ReplyDeleteMy favorite quote is by Kahlil Gibran and it states "Work is love made visible".
To say that your work has been an inspiration to everyone you touch would be an understatement. I have been amazed by your strength and perserverence. You have lived through the most difficult/ draining experience any parent is called to endure.
Giving up is the only way you can fail.
Rest, but do not quit.
We will be there to support you, to cry with you , to raise a glass with you and walk with you on 6/6/10. Here's to all those who are making strides forward against all odds. Cures are not as profitable as the alternative. May God's grace pluck this cause out from all the rest and find a way to make your dreams come true. If you ever want to have coffee, call me and bring your pics and we'll cry together. Pat
Failure is giving in...Failure is giving up...If one person could beat this thing it would have been done. The power comes from taking control and making an impact that triggers more impacts. You my friend have done that in spades.
ReplyDeleteSee you at Shamrockin (if not before)
Jon Baker
I am so sorry for your loss. CF is an awful disease and you are doing the most you can humanly do to help find a cure.
ReplyDeleteBefore my mom passed away, the hairdresser gave her a VERY short haircut. At the time of her funeral, I told the pastor that she would be MORTIFIED to be seen like that. He smiled and patted me and said she was in heaven now, and nothing would be upsetting to her anymore. Please think of this in regards to your daughter. You may feel the guilt of not finding a cure, but her thoughts are elsewhere, loving, happy thoughts.
Lindsey Petersen
Wow....As a Pastor I am blessed by God to be a part of people's lives in many dfferent ways. Now that I am the "unofficial Cf Pastor" I am blessed even more. I am able to spend time with so many different families and simply listen to their own pain. But the reality of it is this; it allows me the chance to escape from the reality of our lives. My daughter is 10 years old and she lives with the maddness that is CF! You see, I too have made the same promise to her as you made to your daugher. I simply wont rest until there is a cure. I think that's why I toss and turn at night. THat's why I listen to each and every cough that comes from her room at night. That's why I become so angry when someone says, "I don't want to give to this foundation." It makes me want to forget the way I deal with things and "Lay hands on them" LOL>>>
ReplyDeleteI am looking forward to meeting you face to face for the Tustin Book signing. There are so many things that I want to say...if only for the tears just maybe. Until then rest in the knowledge that you have never been a failure as a mother. Your little girl is now sitting as a saint listening to saints of old tell their stories. And if she is like her mother and has her ability to express, she is telling stories of her own. And more importantly she is with her Lord and Savior basking in His light....What an incredible thought....