Tuesday, June 24, 2008

Reality bites...

Baby Angel Wings

Today I was checking my email and I had a notice from a family that I had been following. Their little boy named Jasper was diagnosed with Leigh's at 4 months, and he was about to turn one. He went to heaven overnight, and it was so sudden. He just began to struggle to breath, and then he flew away.

He had been doing well, gaining weight and then in just days it all changed. It's so hard to see that family hurting, and to recognize that that is a place we are going to go.

Right now Marie is sleeping on my lap, and the knowledge that she is so fragile feels like a wall of water that is crashing over me. This hurts.... I hurt for Jasper's family, but I hurt too because this is a reminder that we are going to loose her. It's something I really try not to think about too much because, over the last months I've come to a place where I believe nothing I can do will prepare me for that day so why waste the worry, and also, I just want to enjoy her and not be sad. I want her life to be filled with love, laughter, chocolate, sunshine, swimming pools, toys, all the things that children should have. The knowlege that we will loose her is hard, but it is hard to not know what will happen. How much time, the struggle she may go through, and yet I wouldn't choose to know the date either. It's a day I dread.

It's just so hard to swallow, that a child could be there and in the next moment, they're gone. I can't imagine how the family must feel, and honestly, when I think of that time my worry is not for Marie but for Luke, Josie and I. When Marie goes to heaven I know she will run, she will dance, and it will be wonderful. I just worry about what we will do to fill the time, what will we do with all those empty hours until we see her again?

At any rate, this has hit me hard. I have asked God to allow me to carry a bit of Jasper's families grief, to help them bear the weight of that load. I ask all of you to make the same prayer yourself.

"Dear God, please let me carry a bit of Jasper's families grief on my shoulders. Please watch over them, let them feel you near them at this time. Please help them to know that during Jasper's brief life he was so loved, and that they did all that they could to make Jasper's as life wonderful and beautiful as it was. Please bring them peace. Amen."


Michaelene said...

Shannon, you are such a beautiful soul! I am so sorry to hear of Jasper's passing, it is heartbreaking. Little ones are not supposed to die, only old people, never babies. Ugh, it's just not fair.

Of course I will join you in Prayer to take the burden of some of their grief and that God grant them His Peace. Blessings of Peace and comfort be upon Jasper's family.

I think that you and Luke and Josie are doing exactly what you should be with Marie; loving, cherishing, laughing, Praying - teaching and showing her the joy in everyday life. I don't think there's any better way to prepare yourself than to spend each moment letting Marie know just how much she is loved, and that's exactly what you're doing. She knows the love that surrounds her, she's an amazing, strong, beautiful little girl - I can see it in every photo of her - the love just beams from her.
God Bless all of you, each and every step of this walk you are on.
I send much love and many, many Prayers, Michaelene

Mindy Pfohl said...

Shannon- Thank you for sharing your prayer and I do Join you in that prayer! I can not imagine what this family is feeling at this time. I understand the emotions that it has had to stir up in you! My prayers are with you as well! Especially with the similar diagnosis! My heart just goes out! Hugs to all of you and you keep lovin' Marie! -Mindy

Cristy Balcells said...

Hi Shannon! Your blog is so inspiring. You are a special mom for special girls.

Eva has leighs disease too. It changes everything - in terms of perspective, right? Every day I just want her to be happy. There is a certain peace about not having to "change" the gifts that you have been given but only to recognize them as gifts.

I hope you will contribute to MitoAction.org - we all need moms who have some faith in this confusing journey to help us when we are down.

Cristy :)

brightwells said...

Shannon, I am praying for Jasper's family along with you. I think no matter how strong one's faith can be, sometimes things still seem so unfair. Enjoying Marie and allowing her to enjoy the simple things are what is important right now. I continue to pray for you all and especially sweet Marie!