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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Reach for the stars…

It has been a week of praying, reflecting and preparing for what is to come…not unlike this season we will embark on in the coming weeks that many call lent. I will get to an update on where we are at with our son-in-the-making after a brief story of what Matthew was up to this past week.

When I put Matthew to bed on Sunday night I noticed a plastic star in his mouth. It wasn’t the usual puzzle piece but I didn’t think it was too out of the ordinary at the time. During my drive to work the next morning I had a realization thought that made my heart skip a beat. I immediately called Theresa and asked her to remove the half shelving unit from his room…a shelving unit he is fond of moving around to different locations in his bedroom. Matthew has several little stars placed on the ceiling around the light fixture which will glow in the dark when the light is turned off. None of them were missing when we snapped the picture shown here on Sunday. He had pulled one of our stools from the kitchen island into his room, placed it on top the shelving unit and proceeded to try to climb up his therapy swing. The thought was…remove the stool, remove the danger. My apologies for the bad photo quality…it was not my highest priority at the time…not bad though for a stop-and-go, grab the son manuever, huh?

Apparently, the stool was optional and not needed. The only way he could have reached the top was to place his feet in the hand-holds of the swing, as you see he is trying to do in the picture, and proceed to climb up…and people wonder why we are always saying Matthew needs to be watched 24/7…it is for his own safety.

As a family, I would have to say that we have been more than amazed at the outpouring of support we have received from all of you who read and shared our story over the past few weeks through this blog. As you have shared on Facebook and Twitter our prayer request for this new little boy, God had been lifted up and we are more at peace with whatever will happen over the next few months as we await his arrival. As a family, we had the chance to have Theresa anointed with oil by our church family and prayed over…it was powerful and a blessing of peace. Please continue to pass along this blog to friends and family…we are honored to show others the power of prayer and suffering through our families stories and experiences.

This week we will be having a 3-D ultrasound to take a look at the baby’s ears…this will be a further clue to the CHARGE Syndrome puzzle. People with CHARGE Syndrome have a characteristic ear (read more at this link) that is unique to CHARGE Syndrome. Please pray for a clear picture of one or both ears. We also hope to see a clear picture of his face and the possible cleft lip.

We have had good days and bad days over the past few weeks. A movie scene that keeps playing over and over in my head is from the movie Facing the Giants. Coach Grant Taylor, after giving up on trying to “make” his players want to play better and to want to win…challenged them in a different way. He challenged them all to get right with God:

“I want God to bless this team so much that people talk about what He did. But it means we got to give Him our best in every area. If we win, we praise Him. And if we lose, we praise Him. Either way, we honor Him with our actions and our attitudes. So I’m asking you: what are you living for? I’ve resolved to give God everything I’ve got. Then I’ll leave the results up to Him. I want to know if you’ll join me?” Grant Taylor, football coach in Facing the Giants

If our new baby boy doesn’t have CHARGE Syndrome, we praise Him. And if he does have CHARGE Syndrome, we will praise Him..Either way, we honor Him with our actions and our attitudes. I want to know if you’ll join me?

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right column.