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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Making yourself Grumpy?

As we were all hanging out at home one day this week (a rare occurrence lately in our house) we heard a familiar sound coming from Matthew. Having a child who is non-verbal can be challenging but we have learned to identify his sounds almost as if they were an assigned ringtone or notification tone on our phone. He was annoyed…in most cases it means that Sarah Anne has done something or taken something or is just generally in his peripheral space. Theresa called out the accompanying phrase “what’s wrong with Matt?” Usually the phrase is followed by a confession or an observation. This time the response made us all laugh. She responded with: “I didn’t do anything…Matthew is making himself grumpy.” We laughed at yet another Sarah Anne original phrase and went on with our day. It wasn’t until later in the day that the innocence of that phrase hit me hard.


Matthew, in a not so grumpy moment enjoying the sprinkler on a warm summer day!

“The pupil dilates in darkness and in the end finds light, just as the soul dilates in misfortune and in the end finds God” Victor Hugo – Les Miserables

As I was driving I began to recall moments that God plants in and around the trials we were going through. Funny how we tend to focus our entire energy on the trials and miss the small rays of sunshine…God’s reminders that He is in silently there, silently giving us everything we need. One such reminder was during an emergency trip across the state to replace a leaking feeding button for Isaac. We were lamenting about our broken central air conditioner back home and the reality that we would not be able to absorb going to the bi-annual CHARGE Syndrome Conference this year (a much-anticipated, encouraging, recharging event). These things and many more were heavy on our heart as we entered the hospital…then God gave us a little oasis in the form of a chance encounter. Theresa accidentally pressed the wrong floor elevator button and as the doors opened there stood another CHARGE Syndrome family we haven’t seen in 4 years. A chance encounter? After our appointments we had lunch and shared part of the afternoon together. We shared experiences, laughed a lot as we caught up with what has been going on over the last several years. it was a much-needed boost in the arm. We felt as if we had a mini conference in just one afternoon.

Life is but a Weaving (the Tapestry Poem) 

“My life is but a weaving

Between my God and me.

I cannot choose the colors

He weaveth steadily.

Oft’ times He weaveth sorrow;

And I in foolish pride

Forget He sees the upper

And I the underside.

Not ’til the loom is silent

And the shuttles cease to fly

Will God unroll the canvas

And reveal the reason why.

The dark threads are as needful

In the weaver’s skillful hand

As the threads of gold and silver

In the pattern He has planned

He knows, He loves, He cares;

Nothing this truth can dim.

He gives the very best to those

Who leave the choice to Him.”

Corrie ten Boom

A couple of Before and After stage one cleft lip and palate surgery you were all praying us through back in May. What a difference already!

A couple of Before and After stage one cleft lip and palate surgery you were all praying us through back in May. What a difference already!

Oh, the times I can relate to this line “…Oft’ times He weaveth sorrow; And I in foolish pride, Forget He sees the upper, And I the underside…” The words “And I in foolish pride” stick out to me every time I read this poem. I think because it cuts right to a central problem I deal with. I can’t do this on my own. We cannot do this on our own. I often forget (too often forget) to know that there is an upper side that I may only get to see glimpses of in this life. I have to fight not to fix my gaze on the confusing bottom. Each broken vehicle, each leaking pipe, each surgery, each ER visit is part just another shuttle making its way through the weaving loom. My foolish pride blurs my vision that part of this tapestry has nothing to do with me or Theresa at all as we raise our unique family. A large part of this tapestry is the people who we come into contact with as we ride the shuttle through the loom. The caregivers, nurses, doctors, fellow travelers…along with our family, extended family and our church family. Whether we are being used to lift up and encourage other families or are the receivers of someones talent, gift or financial help, all of it is part of the tapestry that we only get to see glimpses of. Oh what a beautiful garment it will be when it is revealed to us in heaven!

My prayer this week will be to fix my gaze on the glimpses of the upper side of the tapestry even though my vantage point is mainly the bottom. Oh, and also to not “Make myself Grumpy” in the process.

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