THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Showing posts with label Eilish. Show all posts
Showing posts with label Eilish. Show all posts

Friday, October 22, 2010

What's Next

Well?


Now what?


How do you move back to "normal" (whatever that is) when your heart is heavy and sadness sits on the brink of your eyelashes?


What's next?


Resolve.  


That's what.


Resolve to keep advocating... supporting ... educating ... praying .... connecting ...fighting .... hoping .... walking....


Resolve to live each and every day to the fullest.


Resolve to be kinder and gentler to the people around you...and allow them to be kinder and gentler to you.


Resolve to forgive....and be forgiven.


Resolve to say "I love you" a little more often....and offer more random hugs throughout the day.


Resolve to step away from the business of life to read another book, kick a ball around the yard, and color outside the lines.


Resolve to lift up all of the families who have lost a loved one to this blasted disease in your thoughts and prayers...not just now...but also in the years to come.


In an effort to provide tangible support to Eilish's family during their time of need, a memorial fund has been established.  The family resides in New Zealand.  Readers from other countries may prefer to donate via a securely linked PayPal account, because the bank charges a $25 fee for overseas deposits.  Here's the information:


*   A non for profit charitable account has been set up for Eilish. The purpose is for people to donate money for use at the discretion of Eilish’s family. The account will remain open for 6 months and at the end any unused or non - disposed of money will be automatically donated to DYNZ – we need to have a charity attached for any residual money.

Account number is Westpac 03 1557 0458531 000 ‘Eilish Memorial Fund’.

Anyone can take this account number to their local Westpac or deposit online
 *   Offerings to the family can also be made securely via THIS PayPal LINK, using the following email address: eilishtrust@yahoo.co.nz

Condolence messages can be left at the following links:

To Honor Eilish - Facebook
Children With Diabetes - Thread Link
Light a Candle For Eilish

Additionally, memorial donations in Eilish's honor can be made to the diabetes advocacy organization(s) of your choice.  Here are a few links to some options:

Diabetes Youth New Zealand
Diabetes New Zealand
Juvenile Diabetes Research Foundation
The Faustman Lab
Diabetes Research Institute
International Diabetes Federation
American Diabetes Association


I also wanted to take a moment to share the words of my mother.  My mother survived the death of a child.  June 15, 1978 changed her life and our family forever.  I have always found this personal message inspiring, and feel it's appropriate to share here as we move towards healing following such tragedy.  This letter was written to from my mother's heart to another mother in 2009, after her baby died...  
When I was 30, Mark my first born child died. He was nine.

School had just let out for the summer. Mark had been promoted to the 4th grade and Wendy to the 1st grade. The day started out just like any other Thursday without school, breakfast, Mark's soccer game at 9am, helping a friend by caring for her child, lunch, and then to the pool for a swim. Only on that Thursday, Mark died in the pool. To this day, we do not know why. He was an excellent swimmer and diver, but on that day something happened. What....?? He just died. We do know that he did not drown. At that time, we were living in the Caribbean. On Saturday, we were planning to leave to spend the summer with my parents in CA. We left for CA as planned, but instead of sitting in the seat beside me, Mark traveled home on the plane in a little white coffin.

Everyday, about 265,000 children die, worldwide. It is really not that uncommon, but it is always tragic. To baby Cora's Mommy I would like to share:

1. Mothers are pre wired by God. When our child dies, the first response is shock and a feeling of numbness. This is the time when we set up foundations, playgrounds are built, and soccer teams are turned into living memorials.There is a reason that we seek a positive outcome from such a horrible loss. We want our child's life to have meaning. We want our child to be remembered. We never want them to be forgotten. One way of doing this is to make something tangible that it is positive. This is good.

2. To all Mothers I want to say, it makes no difference how old your child is at the time of death. The crushing grief is the same. Whether your child dies at birth, at one, nine, 16, 21, 45 or older, you will suffer untold loss and pain. This is normal, but difficult. Mothers are supposed to die before their children, not the other way around. It never occurs to us that we might live to bury our child. Every death is a surprise, even if your child has been sick for a long time. Mother's never give up hope of a reprieve. You never gave up hope that Cora would live.

3. It is important for every family member to have a chance to say goodbye. This includes siblings no matter what their age. Immediately after death the family changes. No one is more sensitive to this than other children who continue to live.

4. It is normal for grieving Mothers to cry.....for a long time. It's ok for you to cry for a long time.

5.There is no set time for you to complete the grief cycle. The expectation that grief should be finished in one year is completely unrealistic. The truth is, it takes a lifetime. I will say that you will eventually start to think of Cora every other minute instead of every minute. One day you will realize that you have gone five minutes, and then perhaps 30. You will never, ever go 24 hours without thinking of Cora. Cora is part of you. Therefore, until you take your last breath, Cora will live forever in your heart. I look forward to Heaven. Death lost it's sting the moment Mark died. I have never been afraid of death since.

6.Faith in the Lord Jesus gives hope. Jesus died and then lived again. We have been promised that our children will live again, too. But, no matter how much faith you have, you will never stop missing Cora. At times the separation will seem unbearable. This is alright. The "missing" part is really hard. It doesn't mean you don't believe or have faith in Jesus. It just means that you are normal. No matter how we picture heaven or how we picture our children in the arms of Christ, the reality is....we want them here and not there. Jesus understands this. He will never be angry because you love and miss Cora. Instead, He will offer you mercy, grace and tender love. It was Jesus who said, "Blessed are those who mourn, for they will comforted." Jesus does not lie. He only tells the truth. Often in my most desperate hours of grief, I felt the closest to Jesus. I honestly felt his warm love surround me. He held me up when I felt like falling or dying. He will hold you up too.

7. Why did Cora die? There is no answer to this. We live in a temporal world in which to live is also to die. I remember asking a friend, "Why me?" I was stunned by her very frank answer. She said, "Why not you?" And so, I have accepted "why not me." I am just a person, just like you. And, sad things happen to people.

8. Be kind to yourself. I didn't know how to act. I didn't know how to mourn. Learning to live without Mark took time. It will take you time too.

9.Will you ever feel the same as you did before Cora died? No. That part of your life is over forever. Does this mean that your life will never be good again? No....in fact, life can be better for you as a person. I have become much more compassionate. It is easy for me to reach out to you. I am not afraid of your grief. Someday, you will reach out to another Mother who is trying to learn what you already know. She will look at you and say, "You survived, so can I." You will give her hope.

10. I am stronger. I know that I have survived the one thing that I said I never could do. I also know that I haven't done this by myself. Through the years, I've had family, friends, and people I don't even know praying for me and supporting me. Most important, I give praise to Jesus for "foot prints in the sand." I can testify that Jesus carried me when I couldn't walk. He will carry you too. Don't be afraid of this journey that you now must travel. You do not travel this road alone. There are many of us to keep you company. We will find you, help you, pray with you and most of all, we will love you.....and, Cora. After all, she is now the playmate of our children. This makes your sweet Cora, our friend. I love you, Cora's Mommy. Love you, Mark. Love you, Cora.

God Bless all of you, Friends.
From my CANDY HEART to yours,
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Wednesday, October 20, 2010

Dearest Ella.


Natalie Grant - "Held"

I've been sitting here for an hour.

Maybe more.

I'm really not sure.


I type these names with a heavy heart.  They are a small collection of names that belong to a larger list of children who have lost their lives to Type 1 Diabetes.

Today, it is with great sadness that I add the name of another beautiful child.

Meaning:  God's Promise
Eilish and her younger sister, Ella
(Picture from CWD member profile)

I cannot begin to fathom the emptiness that must exist.  The heartache.  The grief.  The news today has knocked the wind out of me....and reminded me, once again, of how quickly everything can change.

My immediate thoughts turn to Eilish's parents....parents who were vigilant and educated....parents who embraced the challenge of Type 1 Diabetes and were sacrificially willing to do whatever necessary to ensure their daughter's well being....parents who, yesterday, feared this potential complication in the back of their minds -- and then woke up today to realize it firsthand.

And then I think of Ella.  Sweet Ella...the sister who is left behind.  I look at the picture of the two of them running on the beach and cannot help but to envision my own daughters.  I never had a sister growing up, but my girls have taught me how steadfast and indivisible the bond of sisterhood stands.

I cannot help but to come back to Ella in my mind over and over again.  Yes....I am a mother raising a child with diabetes. My heart cannot rationalize the pain that must exist in the emptiness.  But I'm also a little sister.  A little sister who once ran with her older brother while chasing waves on the beach.  A little sister who knows all too well what life becomes when the world around you shatters by the unexpected death of an older sibling.

And so, from the depths of my Candy Heart, I want to share these words....

Dearest Ella,


Your name has many meanings, including Bright Light and Beautiful Fairy.


Your mommy and daddy may cry alot in the days, weeks, months, and years that lie ahead.  You don't have to be afraid. When you see their tears, please remember that they love you and they are not angry with you.


I am sure you have always been, and will continue to be, a bright light in the world around you.  Despite the confusion, sadness, and anger you may experience, please do not ever forget how incredibly special you are.


You, Sweet Ella, have done nothing wrong.  You loved your sister with all  your heart and she knew how much you loved her.  I can see how special she was to you when I look at pictures of the two of you together.  If I can see your bright light in the pictures, I can only imagine the immense love your friends and family must have witnessed.


As you grow up, you may often ponder what your life would have been like if Eilish was there to share your journey.  It's okay to think about her as often as you want. It's okay to cry too.  She will never be far from your thoughts as you embark on the milestones of life -- your first date, your first day at college, your wedding...Eilish will remain in your heart forever.


Diabetes can never take that away.

God, make me brave for life: oh, braver than this.
Let me straighten after pain, as a tree straightens after the rain,
Shining and lovely again.
God, make me brave for life; much braver than this.
As the blown grass lifts, let me rise
From sorrow with quiet eyes,
Knowing Thy way is wise.
God, make me brave, life brings
Such blinding things.
Help me to keep my sight;
Help me to see aright
That out of dark comes light.
--Author unknown



CLICK HERE TO LEARN MORE ABOUT WAYS YOU CAN HONOR EILISH'S MEMORY.

Tributes to Eilish by my Fellow Bloggers:
I'm trying to keep track of them.  If you have a contribution, please use the linky to add your post.  Thank You.





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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.