legacy

last weekend, i ‘randomly’ (not really because i have an inkling that God led me there) came across a mommy’s blog.  only, it wasn’t your typical mommy blog with lots of pictures of smiling, happy kids, and details about everyday happenings.  no, this mommy’s entry was about how her precious baby took his last peaceful breaths in her arms.  his favorite place to be. 

baby tripp had junctional epidermolysis bullosa (“eb” for short), a rare genetic disorder.  it’s been called the worst disease you never heard of.  there’s no cure.  because of one little missing protein that binds one layer of skin to another, little tripp suffered more in his short two years and eight months than most will in a lifetime.

and at first, it’s hard to look at his pictures on his mommy’s blog because you see a sweet little baby with painful blisters and open sores all over his head and body.  you see that he is wrapped up in bandages to protect his fragile skin as much as possible.  you see his trach and his g-tube.  you see that he has lost his sight.  you see blisters in his nail beds where his fingernails should be.  it’s hard to look at because we all know how the pain from one little canker sore, or one foot blister can totally bring us down.  so it’s hard to even bring ourselves to imagine the kind of pain baby tripp has felt every day of his life.  and then we realize that kind of pain is unimaginable.

but beyond the initial difficult things you see about baby tripp, you see something simply amazing.  in spite of all that he suffered, you see his beautiful, radiant smile.  and then you notice his mother right next to him, gazing at him with that same beautiful, radiant smile.

then you begin to read courtney’s words about how she has put all else aside and made it her life to care for him.  and though she hates what this disease has done to her baby, she never rails against her lot in life or complains about all that she has to do.  no, amazingly, she counts it all joy.

and that part makes me cry.  pure, unconditional love at its finest.  truly, a beautiful picture of the enabling power of God’s grace in her life put on shining display for all to see.  courtney’s love for her son is ironclad and her devotion unwavering.  she considers every day with him a gift. 

the doctors said tripp wouldn’t make it to his first birthday.  but i believe that the strength God gave tripp along with the tireless, dedicated care of his mother is what allowed him to live as long as he did.  his life was a miracle, pure and simple.  for though he could speak no words, he taught thousands.  about love.  about courage.  to remember compassion.  to be thankful.  to have joy in all circumstances.  because of baby tripp and his mommy, thousands were driven to pray.  some who haven’t in years.  others for the very first time.  God used this one little baby to bring many to himself.

and surely that is a legacy worth having.  for while man looks on the outward appearance, the Lord looks on the heart.  and baby tripp was (and is) beautiful in His sight.

though i’ve never met this precious family, their story has had a profound impact on me.  it reminds me that really, i have nothing to complain about.  it reminds me to be deeply grateful for the undeserved blessings in my life.  to hold my teething baby close a little longer.  to count it a privilege to be able to take my little daughter to the potty at 4am and to give her an extra hug before she goes back to bed.  to listen with my ears AND eyes to my son’s hundredth question of the day.  to make sure my daughter knows it’s okay to be emotional and sensitive because that’s how God made her to be.  to express my appreciation more often for my wonderful, hard-working, faithfully dedicated husband.  i am blessed and my cup runneth over.  i don’t deserve any of it and because of baby tripp, i will choose not take any of it for granted and am resolved to follow courtney’s example in showing unconditional love and count it all joy.

one of courtney’s wishes in memory of her son is to increase awareness of this devastating disease and to raise hope (and a cure) so that someday soon, no other child will have to suffer like hers did and no other parent will have to make the excruciating decisions like she did.  and so i’m sharing their story here in my circle to do my small part to increase awareness and to bless others with baby tripp’s legacy because he was truly a little one worth knowing.

please visit courtney’s blog and read their amazing story.  you’ll probably cry.  but i promise you’ll be so blessed by it, too.  🙂