Back to School

Well, another summer has come and gone SO QUICKLY!  We spent our summer busy with swim team practices, meets, and fun trips to the pool.  We had “Meet the Teacher” night last night for Katelyn, and will attend “Meet the Teacher” tonight for Megan.  It always stirs up emotions (for her and for me).  The nurse has already reached out about meds for this year, and to schedule our annual 504 renewal (post coming soon).  There are so many things to think about at the beginning of each school year WITHOUT JIA.  But WITH JIA, there are many more…

This letter was posted by another JIA mama last year at this time, and I thought it was worth a share.  Thank you Jessica Shaw Ward for allowing me to share this again with the world!

An open letter to the teacher of my medically challenged child:

I see you. I see who you are. I see the genuine warmth in your smile as you welcome each of them. I see that you have sacrificed much of your summer break to make this room exciting and inviting for these 25 children. I know you’ve spent your own money on books and markers and fruit snacks for little ones who are not yours but soon will be. You gave your own precious time to study their photos so you could greet each of them by name. I can see that you are one of the educators who still have a passion for it in your very soul. I can see that you truly, truly care. And that, in time, you will come to love all of these special babies.

At least it’s my fervent wish that I saw these things in you during our brief introduction. I lie awake at 1am hoping that you are these things and that you do these things. Because in 8 hours, I’ll have to hand over my perfect, imperfect child to you, and I’ll have to believe in you.

Will you believe in her? Will you see her? Will you learn to read her eyes — look beyond her cute glasses and really read them? Will you know that when they’re unfocused and bright green, it’s because she’s holding back tears of pain? And when they’re closed, it’s because she’s convincing herself she really can stand up from her chair? Will you remember, on your busiest and noisiest days, that she will only whisper her needs to you, and only when the pain is beyond bearing? Would you believe me if I told you she was once a sassy toddler, and will you rejoice in the rare occasion when that sassy girl shows up for 3rd grade? Will you look beyond her advanced reading skills and perfect math assignments, and recognize how much extra time — and extra pain — they cost her? Will you respect how badly she wants her classmates to not know about her condition?

Because she is extraordinary. She wakes up earlier than her peers because she often needs a hot bath before her knees will hold her tiny frame. She sleeps through her after-school hours while her friends play outside. She tapes hot packs and ice packs to her hands so she can get through evening homework. She misses precious school days to be examined, poked, prodded, infused, and then disappointed by the doctors’ frowns. And even more school days to fight normal childhood infections twice as hard and twice as long as her friends, because her immune system has been killed by the finest, ugliest drugs we have to offer her. She spends those days expertly navigating a hospital that shouldn’t feel like her second home. And when she misses those days, she cries. She would always, always rather be with you. With her classmates. Where a 3rd grader belongs.

I’ve raised a lot of babies and I’ve known a lot of teachers. As much as I can, I understand that as a group, you are among the most giving and compassionate people on God’s earth. I see that your “job” is so very much more than a job and that so many of you give a huge part of yourselves to your students. I’m grateful for and humbled by that.

I don’t want to be “that” mom. God, how I wish I didn’t need to be. But, truthfully, I’m going to be. I’m going to ask you questions that seem ridiculous and I’m going to take her out of school for 3,812,439 appointments for 417 different reasons. Im going to email you about trivial things and talk too much during our conferences. I’m going to be too attached to her and continue to allow her to be too attached to me. But, in spite of all that, I hope you’ll try to see me too. I’m just her mom. I have to bring her through things that I still, after years of it, can’t believe a child has to endure. I don’t always do it well, but I hope you’ll see that it’s my most important job. I’m just her mom. I only want to help her be okay.

Because she is extraordinary. She is funny and brave and pretty and imperfect and challenging and shy and somewhat difficult to get to know. She will never leave another child friendless, despite her pain, despite her exhaustion, and no matter what it costs her to find the courage to speak up. She is kind and brilliant and creative, tired and reticent and afraid. She is my final baby, my mercy and my fear. And I am going to ask you, for her, to be the best teacher you’ve ever been.

Because she is extraordinary.

I sincerely hope that all of my JA friends have amazing teachers for their kiddos this year.  They are all extraordinary!


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