From Chaos to Calm

From Chaos to Calm

It’s difficult to struggle through the chaos jumping from one thing to the next with no break between. Emergency after emergency barrels you over and there’s no way to tell for sure you’ll make it up for breath before the next wave comes crashing down, pushing you deeper underwater. You manage to survive the onslaught and suddenly everything goes quiet. You cringe waiting for the next wave to hit you and it doesn’t come. Instead, there’s nothing. The silence is deafening as you wash up on a perfectly calm beach which would theoretically be a wonderful place to be except the transition is so abrupt it’s jarring.

This is what happened after our son was diagnosed. Suddenly all the chaos went silent. In an effort to cope I’ve been cleaning the house non-stop and working continuously on our son’s occupational and physical therapy. I picked out decorations for the house and placed them appropriately. I’ve done some research into my next writing project. I’ve put in time at work. Today it finally hit home. There are no more emergencies. We may never rush off to the hospital emergency room again juggling calls from specialists and the pediatrician to determine if they want our son immediately admitted. From here on out our interactions with medical professionals are going to be routine. Straight forward. Normal.

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Beginning a New Chapter

Yesterday we went to see, what we expect to be, our son’s last new specialist. It was an emotional day for me┬ábecause this felt like our last chance for new ideas. We left empty handed. All we have left to do is implement his care plan, which is straight forward albeit time-consuming.

Have you ever had the feeling you’ve hit the end of a chapter? Today feels significantly different from yesterday. Yesterday our son’s care plan still had the potential to change. Today we know exactly what we need to do for at least the next six months. While his care takes up the majority of my day, it’s a relief to know the load isn’t going to get heavier even if it doesn’t get lighter.

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Our Little Trooper is Now Diagnosed

Our Little Trooper is Now Diagnosed

We now have an answer for why our son has been struggling so much medically. It turns out he has a genetic mutation in a gene SHOC2 which causes a condition called Noonan Syndrome-Like Disorder with Loose Anagen Hair. This is all new to us, we only found out about it yesterday. It’s been even more difficult to get our minds around it because Dad is still recovering from his surgery. From what I can tell so far the diagnosis is overall good news. Speaking to other parents whose children also have this condition, it’s quite possible our son will grow out of his feeding difficulties. It’s also not a degenerative disease, so whatever he accomplishes won’t be lost to the condition as he ages.

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