Given a name

Twelve years ago today, we were given a name.   The name of the disease with no cures or treatments that doctors ensured us would take the life of our daughter by the age of two.  The name that invited us down a path that no parent dreams about going. The name of the disease that had stolen her ability to laugh, to smile, to roll, to sit up, to sleep thru the night, and to make eye contact.  The disease that had caused tens of thousands of seizures and countless hospital stays.  The name of the disease that would take away her ability to swallow, enjoy food, and to organize her movements.  The name of the disease that makes the common cold a dangerous battle. The disease that has caused us more sleepless nights than I can recall. The disease that introduced us to the world of therapy, medical equipment and specialty doctors. The name that gave us a care team of several specialists including palliative or comfort care. The name that would force us to completely rely on friends and family in so many circumstances because two hands are never enough.  The name that introduced us to having nursing care in our home. The name that would give us entry into the special needs community, birth to three, and IEPs. The name that opened our eyes to handicap accessibility and how one size never fits all. The name of the disease that has had me bedside, night after night, praying that she would turn the corner, that the breathe I see would not be her last. IMG_4471

This morning, my husband gave thanks for this day twelve years ago, for the name of the disease that brought us completely to the end of ourselves and caused us to rely fully on our Lord and Savior.

The name of the disease that would cause us to reevaluate all that was important to us and appreciate time together.  The name that would cause us to give thanks for the little things like an appropriate smile because they are such an amazing gift.   The disease that would teach us that some of the greatest teachers can teach without saying a word. The name that would be a label on medical records but never a definition of who she is. The name that would introduce us to an amazing world of some of the most selfless and loving doctors, nurses, teachers and therapists. The name of the disease that would teach us what real love looks like. The name that would continually open our eyes to the love of the church and what it means to be the hands and feet of Jesus. The name of the disease that lead us to the cross and gave our family life.

How big is our God?

Psalm 28:7  The Lord is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy.  I burst out in songs of thanksgiving. (NLT)

Just far enough

Just far enough

I can hardly believe school is starting tomorrow. This year I have three in school with my oldest, Blake, starting middle school, Elena will be in 4th grade and Evelyn will be starting 4K. Truett will get to enjoy some one on one mommy time.

We brought Elena in to meet her teacher the other day and as we walked down the hall she was just beaming. Her face lit up the entire time we were there. She loves school!

Elena splits her time in the special ed and 4th grade classroom about 50/50. When she is at school the kids love her. Many of them who have been with her for years understand how she communicates and patiently wait for her eyebrow raise for yes. They have to put their names in a bin and draw one name to be Elena’s helper for the day so that everyone gets a turn. Other wise it was hard on Elena to choose. Often a few little girls choose to stay in on recess to read or play with Elena. They see Elena like we do. The compassion and care they show often brings me to tears.

Can you believe that there was a time that we didn’t feel that school was a best option for Elena? Her health is too compromised. She gets sick so easy. Every cold leads to pneumonia. She’ll be exposed to germs. Kids can be mean. Will she even benefit from being there?

All of these fears are out there and very real. But the benefit of seeing my sweet girl light up being around her classmates far out weighs all of those worries. The joy that I feel knowing that there is a group of students who don’t fear others who look different and know that all because you are non verbal doesn’t mean you have nothing to offer is priceless. May their hearts never change.

I am so grateful for her teachers and therapists that held our hand every step of the way. Continually pushing us just slightly out of our comfort zones. Seeing the things that we could not. Believing and striving for things that we had no idea were possible.

So to every teacher or therapist or paraprofessional who has ever believed in what appeared to be impossible–Thank You! Thank you for pushing us just far enough. Thank you for valuing my input and role as a parent. And thank you for seeing my child for all that they are and more!

Know that you are valued and that I have and will be praying for you this year. Please continue to expect great things!