This verse from Exodus continue to reign in our lives. I know I shared this verse just a few days ago, but we cannot hold back using it again as we have felt the tremendous love from all who read this blog…and share it.
We often hear from people that we must be very “special parents” to not only have one child with special needs, but now two. We hear words like gifted, special, patient, strong…blessed. To be honest, most of the time those words just roll off our backs…and we think, blessed? As Matthew is rubbing his own poo into the carpet or taking his clothes off in public to regulate his body temp. Just a few days before Isaac was born I was wallowing in all of this “blessing” as Matthew was doing his happy yodeling noises as his two older sisters were performing in a ballet recital. Several people turned around and gave a little smile, a nod saying that he was okay. But, there was one person who turned around over and over and gave me the “get him out of here” look. I moved to the back. The back is where we spend a lot of time enjoying the many activities our family is involved in. I determined in my mind that I did not move because Matthew was distracting…I moved because I was distracted by one person giving me the look.
But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth Exodus 9:16
We get a different perspective from the back. We also get a different perspective of seeing how God works and how he blesses people through the conduit He has made through Isaac, Matthew and the rest of the Troupe’s. We may deal with heartache, pain, stresses of surgeries, waiting…the constant waiting for healing. We watch as Isaac’s chest rises and falls with each breath but we also get to see how God works through the people He has put in our lives, in our family, our church family and through all the people around the world are praying for this little guy. We physically get to see the fingerprints of God in how prayer is answered, how needs are met and how lives are changed. I would agree, we truly are blessed. We are blessed by seeing others blessed by being able to use their gifts, their contributions, their wealth and most of all, seeing prayers answered. I feel like we are now blessed twice and will continue to see things from a different perspective.
Now, for the Isaac update…he is doing well after his surgery. The surgery was more difficult than expected. In true CHARGE fashion, the abnormal connections in his chest were not the normal abnormal. It took a while to figure out all of the plumbing before making the right cuts and stitches. We now pray for healing over the next several days as he remains on the ventilator so he doesn’t have to work at breathing. In a week or so they will try the new connection to his stomach and check for leaks. This repair, along with his cleft lip and palate will be our next hill to climb in the area eating. Pray for no reflux and for the one of the “C’s” in CHARGE, the cranial nerve issues that may be present…this nerve controls swallowing.
As far as the other CHARGE related issues…I will start with the 4 “C’s” of CHARGE. Colobomas - yes, Choanal Atresia – yes, Characteristic Ear – externally - yes, internally - won’t know until other tests, Cranial Nerve – won’t know for a week or so. There are other Cranial Nerve issues that do not seem to be present such as facial palsy…when he gets mad we can see his whole face scrunch up! Other issues related to CHARGE are the heart wich seems okay in the construction, but he has the normal premie problems that need to be resolved with things that need to close or open when a baby is born. His kidneys seem to be fine, but smaller than normal. He does meet some of the genital criteria but I will keep that private out of respect for Isaac! You can read more about the 4 “C’s” of CHARGE by going to the link at the top labeled “What’s in CHARGE in Matthew” – there are links to the CHARGE Syndrome Foundation website if you want to follow the links and are curious about the diagnostic criteria or are just curious in general about CHARGE Syndrome.
What to pray for: healing of the esophagus repair as they had to stretch things a bit to get them together. Pray for the next valley to cross as it comes after this little healing period. Pray for direction for the doctors of how to best handle this complicated little guy. Pray for Theresa as she is released from the hospital today…or as she put it, she is checking out of her bed and breakfast for the past few days. It has been fun watching her nurses chase her all around the hospital trying to find their patient. They bring her meds and food and all say the same thing: “didn’t you just have a baby? You are hard to find”. I know where to find her…right next to our new miracle, Isaac.
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