I don’t think you ever get used to the constant worry.  Held tightly in the very corners of my mind are the fears I supress for our daughter.  I remember one time a doctor said to me, upon hearing that Zoey’s liver was failing and knowing Zoey has down syndrome, said ” would they even put her on the liver transplant list given her condition”  I went into complete panic.  Would they not save our daughter because they don’t deam her life worthy of saving since she isn’t “perfect” in the eyes of some.  In the intital stages of our daughters’ life that was one of the hardest things I  ever had to hear.  I could have never imagined the things I would continue to hear.  However, no one could have guessed the spine I would gain or the fight that would ignite in me for this soul of ours.

Next came the time we tried to secure an insurance policy for her and the representative said ” she probaly won’t live past 8 years old so our company will not insure her”

We have had teachers who would only give her color sheets and have her write her name all day because that is all they deemed she was capable of.  I have been told in IEP meetings that ” I probably don’t know what’s best for our daughter”.

That one hit hardest of all becaues I can assure you her father and I do know what is the very best for her.

This journey is so very hard and so very rewarding.  I look at her and watch her accomplishments and listen to her as she struggles to pronounce a word and cheer with her when she adds or subracts numbers and I am in complete awe of the gift Steve and I have been given.

We have to go Friday for more blood work.  Her liver has taken a turn in the wrong direction again.  We have been stable for so long that this news was a little hard to stomach at first.  After 9 years of..Open heart surger, cirrohsis of the liver, septic shock , complete organ failure, 15% chance of living, functional asplenia, hoshimoto disease, hyper portal tension, esophogial varicies, MRI’s to let you know if there is cancer every six months…you tend to build up a think wall of being able to brace for the impact of news.  But sometimes you let yourself get too comfortable, too settled into the good that you forget to always be on guard.

I catch myself at times just wishing that our daughter could be healthy, that i could close my eyes at night and rest not listening for every single sound.  Not worrying when her mood gets off that we might be on the path to some bad sickness she doesn’t show signs for.

I try to remind myself that none of us is guarenteed tomorrow.

I think to myself, she shouldn’t have to be this brave at 9 years old.  She shouldn’t have to know what every instruement at the doctors is used for, how to give shots, where the best place is on her hand to give blood.  Even as I write this my mind keeps reminding me there are those who have it so so so so much worse.  And that maybe if I complain God will make it worse for us.  Don’t you love the lies the enemy will feed you.

I heard a baptism story this weekend that resonated with me so much.  The couple said how they truly believe ” God had chosen them for this journey to radiate His glory to others” .  And it is that one statement that I have always believed about Zoey.  To my very core I know ( head and heart) that Zoey was put on this earth to radiate Him to so many people who would have otherswise never caught a glimpse of His glory.  That her purpose and our journey is as the verse states below:

2 Corinthians 4:17:

Therefore we do not lose heart. Though our outer self is wasting away, yet our inner self is being renewed day by day. For our light and temporary affliction is producing for us an eternal glory that far outweighs our troubles.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

This journey that sometimes feels like it is going to take us out,  makes me lean and rely on Jesus more than anything else in my life. If it is going to produce eternal glory for someone it is worth every step.  Her life is so precious, every little fiber of her was designed for ” such a time as this”.  She is Jesus masterpiece and so I focus on that.  Sometimes well,  sometimes not so well but “I know that I know that I know”, ( as my mom always says) that Jesus is faithful regardless of the circumstances and especially in the storm.  My favorite promise is ” I will be with you through the storm” …. He didn’t say there wouldn’t be storms…He said ” I will be with you through the storms” and with that we take His hand and walk on.

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