Saturday, September 1, 2012

Shaw Road, Here He Comes!



I am a crazy concoction of emotions these days. Thrilled my first-born is four days away from this new adventure called kindergarten. Confident that God has placed Luke with the right teacher. Anxious that Luke will be anxious (we had a rough spell the first couple weeks of pre-K last year ... drop-offs were not the prettiest).

Interwoven with all of the above is the emotion that come with sending a child with special needs off to "big" school for the first time. When Luke is at the park with me, when he's at Grandma's or running around with the neighborhood kids, there is no 504 plan, no Emergency Action Plan. I take that back: Mom and Dad were the emergency action plans. I know his doctors' numbers by heart, I know what he looks like when he's resting and when he's playing. I know when to give him his medication, when to push, and when to back off.

Making sure that is communicated to all his school caregivers feels bigger than I thought it would.

What I want to communicate to his school is this: Luke is a normal kid, but he's not. Know that his heart defect is serious and complex, but treat him like any other kid. This is a fine line to walk.

Thankfully, everyone I've worked with so far has been receptive and supportive. Mrs. Cook, the school nurse has been the point person in making sure all Luke's paperwork is in order as well as distributed to everyone's hands it needs to be in: teacher, librarian, music teacher, recess duty, etc.

Luke's heart defect is never far from my mind, but it's been more forefront these past couple of weeks than it has in a while. He is not your average five year old heading off to school. Although I am 99% certain that there will be no need for an Emergency Action Plan (which includes situational instruction for things like blue spells, heart palpitations, chest pain, etc ...), it still needs to be in place. Every form I sign, call I make, I am reminded that Luke's heart is oh-so-unique.

We've had to navigate this letting-Luke-be-a-kid before, but this is a biggie. My heart is so ready for him to experience kindergarten and I believe he is ready too. His backpack is packed, his hair is cut, his new Nikes are bought. We are praying hard for his teacher and the kids in his class.



I took him to Kindergarten Orientation a couple of weeks ago and while the parents stayed in the gym for Q&A, the principal toured the kids around the school, showing them the classrooms, the library and of course the playground. Luke had a good time and didn't seem nervous at all. We've talked so much about it, he seems very matter-of-fact about it. It helps that several of his older neighbor friends will also be at his school.

A lot of people have asked me if I'm going to cry on the first day. I don't know, but I don't think I will. This is such a happy thing, a celebration of a gigantic milestone. If the tears do come, they are because I am so darn thankful to God for bringing us this far.

For those of you heart moms with future kindergarteners, here are some of the great resources I found and used to give to Luke's school:
Our cardiologist provided the Emergency Action Plan document and faxed it directly to our school, along with providing us with a prescription for a 3-day emergency supply of Enalapril for the nurse to keep in her office.

I have been so thankful for the response we've gotten from everyone involved ... at the cardiologist's and the school. Kindergarten, here comes Luke!

Go get 'em, buddy.

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