Ashley's Story

She will leave fingerprints all over your heart


Living this Life

We are still here in the hospital and it sounds as though we will finish out the week here. Ash feel asleep around 1:00 this afternoon and has not given up any more "offerings". She is resting well and her temperature has come down from 102.7 to around 99. She has not had a wet diaper since 9:00 this morning and we are giving fluid bolus' to try and get her to urinate. We have started a round of antibiotics and anti fungal meds in her IV to fight off a possible infection. At this time we are not planning a trip to Omaha, but we are staying in close contact with our surgeon, GI doctor, and coordinator. Everyone thinks it is related to her chemo therapy. Her white count dropped 7points yesterday. This is just the cycle we find ourselves in and we have 8 more weeks to go. We believe she is doing well despite our current circumstance.

I was often teased while in Omaha about wanting to raise my Ashley in a bubble. At that time if I could have devised a plan to pull it off I would have. Thankfully God did not allow me to come up with anything suitable for her(I found no large bubbles in the shade of Pink). I am figuring out daily that my Ashley has the opportunity to live and that is exactly what she needs to be allowed to do. Dave and I have often had "discussions" about this very issue. Me wanting to keep her confined in that imaginary protective bubble and him already knowing how important it would be for her to live and breathe and experience life on the outside of it. Today as I sit and watch my baby girl feel yucky I am feeling more passionate about making plans for our family that pack as much living as we can into her little life.

I have had a lot of time today to sit and catch up on some of the other transplant children who I have followed throughout my Ashley's story. These families and their websites have been a great source of information, guidance, and perspective for me as I muddle my way through this journey. I have smiled. I have cried. I have prayed. I have grieved. How shocking it is to pull up the sights of children whom I have prayed for and see that they have been received into heaven. Oh, how my heart hurts for the families that had to let go. Thank you donor families for giving them time with their children.

When I think of the gift of life, the gift of time, that has been given to our children through organ donation I am so determined to encourage others to become donors. It is so simple. So easy. So important. Please look at my Ashley's face. Her face is the face of organ donation. She is evidence of how important it is to give this gift. It is something you can choose to do nothing with or something you can give that would mean EVERYTHING to another. Please, please consider how the Father could use your decision to strengthen the faith of another family. We have no idea what He might do with such a gift.

Please don't mistake what I am saying. Of course I still plan on being EXTRA careful and sensitive to Ashley's immuno suppressed state, but she is too full of life to sit by and waste any moments we have been given. "God has not given us a spirit of fear". I want to see her live every moment and soak up each and every one of them. I guess what I am saying is,"Look out ocean here we come!" I want my baby to hear, to see, to smell, to feel the ocean. It is so vast and so deep. When I look out across it I am humbled to know that the God of all Creation loves me deeper and wider and larger than it. Isn't that amazing? "Watch out mountains we are on our way!" She loves to be outside. I can just see her taking in the beauty that awaits her.

What I am trying to share is that I don't want all of my memories of Ashley to be made in a hospital room. I want pictures of our sweet girl living. I want to see her name written in the sand on a beach. I want to see the smile on her face as she feels the cool mountain breeze blow across her cheeks. I want her to know her family. Just to have a picnic on the Fourth of July surrounded by all of her cousins would make my heart smile.

Living this life is what we plan to do. Being thankful for each moment, each day, each experience He gives us with her. Living. I think it is important.


At 8:02 PM , Blogger Ms. McFearsome said...

what a difficult decision you are faced with--to keep Ashley separated from others and from the outdoors where it is assumed she will be the safest--or to allow her to experience and to live and to grow, but where she might be exposed to "bugs"

i don't envy you the choice but i know that you will make the right decisions with God's guidance. because he loves your little girl.

praying for your family and glad to hear that Ash's fever went down.

God Bless.

At 9:07 PM , Blogger Sarah's In the Midst of It said...

Amen, sister! Living life with abundance and to its fullest while here on earth is what God intended for us--and it's certainly what He has planned for His children once we're on the other side of eternity! Good for you for not giving in to a spirit of fear. You are a tremendous mama :)

Praying for that sweet gherkin as you wait test results out in the hospital!!

At 10:36 PM , Anonymous Anonymous said...

praying and thanking God for each new day! Life is what we make it that is for sure...I am realizing that more and more. Will be thinking of you and bringing Ashley before Jesus. Thank you for sharing! Colleen


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