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  • Writer's pictureA.S. Morris

Tip of the iceberg...

Special needs parenting requires the same precision and training of an EOD specialist. Except we don't get a handbook, hours of training, or fancy tactical suits. EOD specialists will likely also tell you even with all the training in the world SNAFU's could happen.

Well, SNAFU is an understatement for today's adventure. We need to get an MRI for C. For the majority of folks this isn't a big deal. You may have suggested that C learn fluent French in two weeks. For various medical reason's C is high risk for an MRI with sedation so our options are child life assisted or MRI with general anesthesia meaning intubated and the whole nine yards. I spoke to all sorts of experts to determine the best pathway. I did my homework. The due diligence needed when making a decision such as this. There is no easy button. There is no chapter in the parenting handbook. We thought we had crafted the best plan possible for C today. Things did not go according to plan. It was a hot mess. I am slightly concerned I am going to be invoiced for an MRI machine. They cost roughly a million dollars if you’re curious. SNAFU. Perhaps Santa could put one on the sleigh...

We are in a situation where we need to expose C to his disease process and what that is going to mean for him. This includes doctors and testing, therapy and specialists. His care team is only going to grow and evolve as he grows and evolves. It’s a delicate balance. Where do you push and where do you hold your ground and where do you give. Sometimes you do all three in 30 seconds. We are also learning this dance as two working parents with a little sister who will be running for President in 28 years. If you've met her you will likely agree with this statement. She did however ask if George Washington / George Jefferson were running this the "movin' on up" party is apparently an option in 2020.

There is a lot of mom guilt associated with today's SNAFU. I truly believe that we made the best decision for C today. With C you don't always know how he is going to react towards things. Somedays we won’t let him outside to play because we are concerned with his reactionary measures. It’s tough. We build a lot of Lego's. We look for trends to try and figure out what causes what and why. There is no correlation. He is our most precious ticking time bomb some days. None of this is said cruelly. It’s our reality. Our boy by nature is kind and good, funny and snuggly. He is a love that doesn't know how to be malicious. Yet we have days when Beelzebub himself has returned. It is exhausting.

We do the best we can in the circumstance we have. We can see the progress C has made and it is heartwarming. These recent changes are heart wrenching. Not one thing will automatically solve our issues. There are many feelings that go into this situation and they are hard to articulate. WTF seems most appropriate at the moment. We keep to ourselves for the most part. It’s easier. Taking C anywhere always add an unnecessary level of stress and anxiety. You are completely unable to focus on anything but him. Even with a grocery list I can't get in and out with kids and still manage to capture the whole list.

Tomorrow morning I will call to schedule his MRI under anesthesia. Which is necessary but terrifying. Yes i know he is in good hands etc..... Still, terrifying. Still isolating. My husband and I don't have any friends with special needs kids in the area. This unspoken understanding is immensely powerful. You can't explain what this is like. I feel like decoder rings should be distributed. A ride or die or bunch.

I had planned on going away for two days overnight this week. A break. Both my husband and I need breaks. It’s been a lot with C lately. For me, this break was a celebration of this part year, a gift to myself. I canceled this trip in October when we took C to the emergency room. Today, i got the point, trip canceled. Perhaps I am selfish wanting a break and celebrating. Perhaps my leaving the house each day for work at the hospital is my break. I can see tree's from the window in my office...…. Lucky for me there is always piles of work that need doing.

We are still trying to wrap our heads around what happened today. C is too. He isn't sure how to process his reactions to everything. We're not sure what to tell him. We are super proud that he tried. We are less than proud that he tried to beat up an MRI machine. He also tried to beat up a nurse and my husband. But....he tried.

There is no grand ulterior plan with this post. Just a snippet into our SNAFU. Other than a MRI of the brain we don't have any major appointments pending. So we will stick to normal and minimize SNAFU's.

In the words of George Washington, "the harder the conflict,

the greater the triumph."

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