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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

The 4 “C’s” of CHARGE

After receiving some feedback and comments from those of you who faithfully read “Lesson’s” I though I would take some time now and then to give you a little information about the little known genetic disorder called CHARGE Syndrome that Matthew carries as a diagnosis.

CHARGE Syndrome is very complex and has many layers…Matthew’s diagnosis was not immediate and was a little complicated to put the pieces together for the geneticist. It took months to finally arrive at this “CHARGE” thing that Theresa and I immediately started to research and gain information. There are tiers to the diagnosis consisting of the “Major”, “Minor” and “Other” features and characteristics of what CHARGE Syndrome really is.

The major features, the four “C’s” refer to Colobomas of the eyes, Choanal atresia or stenosis, Cranial Nerve abnormality and Characteristic ear problems that include the outer, the middle, the inner or all three combined. At this point I will refer you to the CHARGE Syndrome Foundation webpage that describes each of the tiers and a little information about each condition as you scroll down the page.    About CHARGE Page (link)    Be sure to click on the link in the information section for colobomas…The picture on the site is of Matthew’s eyes!

The grouping of these 4 “C’s” are very common to CHARGE and relatively rare in other conditions. What can be tricky about diagnosis and treatment is the severity…it can range from very mild to severe. These four “C’s” are the root cause Matthew’s vision and hearing impairment, the reason Matthew is tube-fed as a result of a weak swallow from the cranial nerve issues, and why Matthew has had surgery on his nose/sinuses.

After all of the medical tidal waves that come and go settle down we are left with the core of what we believe troubles Matthew the most…His vision and hearing loss which contribute greatly to his ability to gather, process and therefore return communication. If we were to look day-by-day at Matthew, I think we would have been frustrated and seemingly hopeless. We wondered how we would “break” through to crack open this puzzle called Matthew. I have to admit, we did have those times of frustration and hoplessness…but if we look at the cumulative progress…Matthew has come a long way. I read recently this quote from Hellen Keller who mentions these little miracles that add up to progress:

“I am just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus– the sound of the voice that brings language, sets thoughts astir, and keeps us in the intellectual company of man.

Blindness separates us from things but deafness separates us from people.

Children who hear acquire language without any particular effort; the words that fall from others’ lips they catch on the wing, as it were, delightedly, while the little deaf child must trap them by a slow and often painful process. But whatever the process, the result is wonderful. Gradually from naming an object we advance step by step until we have traversed the vast distance between our first stammered syllable and the sweep of thought in a line of Shakespeare.”  Hellen Keller

With Sarah Anne, now 17 months old, we can relate to the hearing child acquiring language without any particular effort and are reminded that a deaf or hearing impaired child must trap words in a slow and often painful process. We would also wholeheartedly agree that whatever the process, the result is wonderful.

As I was reflecting on this post and wondering how I was going to add a “Lesson” for this week. I quickly was reminded of how, even though I have sight (with corrective lenses and bi-focals) and hearing…I am just as blind and deaf at times as Matthew.

Once again I will put myself into the same shoes as the disciples…who, after witnessing several miracles, still could not see past the end of thier noses. Jesus had these words for them:

The disciples had forgotten to bring bread, except for one loaf they had with them in the boat. “Be careful,” Jesus warned them. “Watch out for the yeast of the Pharisees and that of Herod.”

They discussed this with one another and said, “It is because we have no bread.”

Aware of their discussion, Jesus asked them: “Why are you talking about having no bread? Do you still not see or understand? Are your hearts hardened? Do you have eyes but fail to see, and ears but fail to hear? And don’t you remember? When I broke the five loaves for the five thousand, how many basketfuls of pieces did you pick up?”

“Twelve,” they replied.

“And when I broke the seven loaves for the four thousand, how many basketfuls of pieces did you pick up?”

They answered, “Seven.”

He said to them, “Do you still not understand?”

Mark 8:14-21

My prayer this week is to have eyes to see and ears to hear the miracles that are happening all around me and to see and hear the needs of others. What are you seeing and hearing around you?