Wordless (Because speechless sounds cliche) :-)

Karis and her "Aunt" Anna

One of my dear friends, Katie Almy, has a beautiful 13 month old named Karis (which is Greek for Grace).  This past December, Karis was diagnosed with a disease call Krabbe.  Krabbe (crab-ay) is a horrible disease which effects the myelin sheath that surrounds the nervous system, inhibiting nearly all voluntary and much involuntary movements and functions of the body.  We hate Krabbe.

 There are many families affected by this disease in a variety of ways.  The good news is that in the last decade paramount discoveries and advancements have been made in the prevention and treatment of this disease.  We now know that if Krabbe is diagnosed at or before birth, the affected child can have a cord blood transplant which gives them the enzyme they need in order to halt the progression of the disease.  Sadly, the only children that are currently being screened are the siblings of affected children and babies that are fortunate enough to be born in one of the few states that tests for Leukodystrophies at birth.

This past week, I had the privilege of accompanying Katie and Karis to Symposium, which is a week long gathering of the Leukodystrophy medical and affected family community.  Symposium is in Buffalo, NY and presented by Hunter's Hope, a foundation that was started in 1997 by Jim and Jill Kelly after their only son Hunter was diagnosed with Krabbe.  Since my return, many have asked, "How was it?"  Honestly, I feel that I cannot yet answer that question.  I feel like saying something really dramatic like, "It was the best of times, it was the worst of times."  I know that seems silly, but it really was!!

Balloon Launch

On one hand, I got to spend the week with two of my favorite people (Karis and Katie), reconnect with some of the most amazing people I know, and meet many more wonderful families and many of their incredible children.  On the other hand, about 80% of the families who attended Symposium have lost one (and many times more than one) child to Krabbe.  Some of those families have since had other children, and though they were affected by Krabbe, because of family history, were screened at or before birth and therefore were eligible to receive a cord blood transplant.  I must say, the difference between these children and those who had not received a transplant was astounding.

From my first day there, the tears began to flow.  My spirit was moved on so many levels.  First, I was so moved by the number of families there (including Hunter's family) who had lost a child.  Rather than burying the pain, or getting as far removed from it as possible, they were at Symposium, surrounded by children who reminded them of their own.  Their pain was palpable.  In fact, I asked several of them why they were drawn to be there.  It just seemed too difficult.  I was so moved by their answers.  "Because it means so much to be around people who understand."  "We HAVE to help!  We must do what we can to rid the world of this disease."  "I want to do what I can to raise awareness and keep others from having to experience this type of loss."

Trevor and his dad.

Then, there are the families with children presently affected by Krabbe.  Each child was in a completely different place. Some were transplant recipients, many were not.  They ranged in age from 13 months all the way to 13 years!!  Their families are hurting in a completely different way.  They are weary, and many are discouraged from the isolation they feel, from the hopeless words of their doctors, and from the way our society as a whole mistreats families such as these. 

It is very odd for me to feel completely incapable to articulate my thoughts and emotions.  Especially when I want to so, so badly.  As I have prayed through this, I believe that God is showing me that there are some experiences for which words are grossly inadequate.  As much as I would love to paint a perfect "word picture" for all who were not there, I just can't.  It was really and truly a "you had to be there" week.  REALLY.  But, what I can tell you is a little of what I learned from these amazing families and their children: to be grateful for each day, to love well and to make each moment count.  Life is precious, and the very things we often complain about are some of God's greatest gifts to us!

Sweet Jackson

I also want to encourage each of you reading this to take 10-20 minutes to educate yourself on Krabbe, Leukodystrophies and Newborn Screening by visiting www.huntershope.org.  Find out how YOU can be an answer to prayer for one of these precious families.

How could I be so forgetful?!?

I bawled my eyes out to Sammy last night. The past few weeks have been miserable for me. Through a series of challenging events and circumstances, I found myself in the midst of old habits and as needy as ever (in a bad way). Ultimately, I needed God to remind me that apart from Him, I can do nothing.

A very wise new friend spoke of how quickly we forget and it really resonated with me. She spoke about how the same people who saw Jesus raise Lazarus from the dead persecuted and ultimately killed the Son of God, and how the Israelites longed for the chains of Pharaoh after God had granted them freedom from slavery. As I heard her say these things, I realized that I was doing the exact same thing.

My natural state of sinfulness is a girl trying to earn God's favor, trying to "fix" myself rather than wholly lean on Jesus' name. I become insecure, paranoid, and just positive that I am the most hated person in the world. The month of June was FILLED with awkward, challenging, discouraging and even hurtful situations. Rather than bringing them to God and letting Him carry my burdens, I tried to carry them alone.

Before I knew it, I was rebuilding the walls that God has so graciously torn down. Vulnerability is impossible for me to accomplish in my own strength. In my flesh, I am very fearful of rejection and abandonment. I know myself too well to see any reason why anyone (including God) would love me or want anything to do with me. Like the Israelites, I was beginning to forget that although freedom is scary, it is so much better than the bondage of fear, insecurity, isolation, people pleasing, emotional eating, anxiety, and self reliance.

The past several days should have filled my heart with joy but because of all of the baggage I was toting around, I found myself feeling so very sad. Last night, God used my precious husband to remind me of the words that I usually say to him! That because of Christ, I am valuable and dearly loved no matter what anyone says, does or thinks about me. He reminded me of the huge victories God had granted over the past few days... I am so frustrating! Was I really in this place again? So inwardly focused that I can't even enjoy the enormous blessings that God has been so gracious to give? Ugh!

"God has chosen the foolish things of this world to shame the wise, the weak things of this world to shame the things which are strong...." This verse almost makes me laugh. I am so foolish and so weak, yet God has chosen ME! Paul says we can boast about our weaknesses, because power is perfected in weakness and Christ's power is dwelling in us!

Perhaps the way I have seen this most in the past six months is through the life of sweet Karis Almy. Diagnosed with a disease called Krabbe, I have watched this unbearably precious baby lose so many abilities that we take for granted everyday. Yet, she is the strongest person I know. Though she is in pain, she rarely cries. And what moves me the most about Karis is that cognitively, she is just like any other one year old, but due to the demyelination of her nerves, she can't use the body God has given her the way I know she wants to. But, she is so content. Her spirit is so sweet, so patient, so joyful. She is so "weak" by the world's standards, but Christ's power dwells in her, and it's unlike anything I've ever seen.

And what perspective that gives me in my struggles. Like Paul (and like Karis), I will be "well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong." Lord, help me never forget!