Here we are. One year later. Surgery was one year ago this Thursday, July 3rd. God has written out the story of your beautiful life. Is it painful to watch sometimes? Yes. Do I understand it every day? I can assure you, the answer is no. Do I believe you hold more purpose in your life than I can put into words? Yes, yes and another resounding YES! Do I believe that God truly loves you infinitely more than I can imagine? Yes. Do I grieve the things we’ve lost this year? Yes, my sweet girl, yes. Do I believe that God has us right where we are meant to be? I certainly do.
This year has brought ups and downs far greater than when you were diagnosed at the age of 1. Visibly seeing you lose most of the skills you worked so hard to obtain and to see you decline even further has been devastating. Ordering a wheelchair, feeding chair and shower chair because you are losing your ability to walk has perhaps been harder than seeing you continue to endure 50+ seizures every single day. Seeing you no longer able to hold a cup or feed yourself is an adjustment that I most certainly didn’t long to make. Most days you sleep a great deal of the day away because the seizures just wreak havoc on your little body…but there are days that are just so good…and we cling to those days!
Yet all the while…God has remained faithful and right there
in the midst of the hard days. Your smile is ever as radiant and your laughter is
what I believe heaven will sound like. You continue to be joy-filled amidst
your daily struggles. I don’t believe I’ll ever encounter another individual
that teaches me as much or as often as you do about Jesus. Your need for me
physically, emotionally and mentally is a daily challenge and reminder of my
GREAT need of Jesus. Your joyful spirit on hard days is a lesson I often don’t
want to learn—but your presence is a gentle cue to look upward and forward.
We aren’t where we hoped we’d be. We aren’t where we wanted
to be. We are however, exactly where God knew we’d be. That is enough for this
momma and daddy. We have to choose to acknowledge that our great big God loves
you and sees you and truly has a marvelous plan for you. He has given us little
miracles all throughout this year…in seeing you ride a bike (an adaptive
special needs bike) for the very first time, having 20+ friends run/walk in a 5k to support you, in seeing you occasionally remember
certain signs, in doctor’s appointments where you endured uncomfortable
situations with a smile on your face, watching you let your little sister
cuddle you and hold you during seizures, seeing you dance when you hear a beat,
feeling your arms circle our necks in the warmest embrace…
You are a miracle. You are a gift from the Lord. You are our
greatest example on JOY. You are teaching us to daily surrender to Jesus and to
remember that this world is not home. It is a temporary dwelling place. I know
with every fiber of my being that you will run, talk, walk and be fully whole
in heaven. While we are here…we have the most precious teacher and example in
you! God is just so good…because he chose us to be privileged to parent you—noone
will ever understand just what a divine gift that is!
Oh, how we love and adore you, our sweet Bug.Love your biggest fan and cheerleader,
Momma
You, my friend, are incredible. Jesus in you is amazing. Your girls are blessed beyond measure to have you loving them so well.
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