Friday, March 31, 2017

Waiting On The Mail

School tours, applications, rejection and acceptance letters. College applications can be rough, but kindergarten applications don't fall far behind. No, I am not kidding. I am not sure if it is because we live in a city or if schools are like this everywhere, but there are a million choices when it comes to public education (even more options if you also want to explore private schools, which we are not). Waldorf inspired, Montessori inspired, art focused, science focused, parent required participation, bilingual schools, schools that meet 4 days a week for longer hours, year round schools. The list goes on and on.

After touring eight schools we narrowed our search down to three schools we really liked near our home. Of course, you are only allowed to pick two schools. They also have this absurd rule that if you put down two choices and don't get into either of them, you can only be waitlisted at your second choice. I guess it is punishment for having two choices, who knows. So after painstakingly eliminating one of the schools (based on the fact they only have a 20% admission rate) we submitted our schools request and then waited. And waited and waited.

We were told the end of March we would receive a letter in the mail with our school placement. And March dragged on and on because of it. All week it took everything in me not to sit in front of the mail box waiting for that letter. A letter that never came.

And then on the very last day of March the texts started rolling in:
"We got our placement"
"Check your mailbox."
"My daughter got her first choice."

Which should be exciting (well, it IS exciting) except our mailbox is one of the last on our mail carrier's route. And so while all of my friends know where their kids are going to school next year (including one that lives two streets away) I have to wait until the very end of the day for our letter to arrive. And while Kaylee is oblivious to all of this excitement, I am a total ball of nerves!! This day can't be over soon enough!!

To be continued...

Friday, March 24, 2017

Just 20 More

"Don't go anywhere because I love you too much..."
My husband whispered into my ear as he was climbing into bed. I had been asleep for a few hours at this point and was woken by his words just enough to process, mumble a quick response, "where would I go because I love you too?" and start to drift back to sleep. However, just before I slipped back into slumber a feeling of dread and sadness filled my heart. Before I could figure out why those words made my heart break, my thoughts were lost to sleep.

A few days later my husband and I found ourselves sitting on the front stoop with glasses of wine. The night air carried the perfect feeling of spring, the neighborhood was quiet with slumber, and we were discussing the events of the day gone by. There was a quiet lull in conversation and I tipped my head back to see thousands of stars dancing above us. Even after all these years the stars seem to surprise me with their glaring presence in the city. Just as I was about to comment on the beauty of the night sky my husband uttered those same words he did the other night,

"Please don't go anywhere. I love you so much."
My heart filled with that same sinking dread it had the other night as I responded. "where would I go? My life is here with you and Kaylee." But even as I was said the words I knew what he meant. I knew it all too well.
"But you are going to die and I don't want you to leave me."

And there is was, the reason for my dread and his desire to ask me to stay despite knowing that it was a promise I was sure to break.

"I am doing everything in my power to stay here as long as possible"
"Just give me 20 more years."

And the thought of twenty more years stretched ahead of me felt overwhelming and impossible. Look how much my lungs have been destroyed by this disease in the past 30 years, how would I ever survive another 20? 52 years old, still so young to the average person, and yet I couldn't imagine how this broken body could make it to such an age. But when you love someone so much that hurting them hurts you even more, you sometimes are willing to tell small lies.

"I think I can do twenty." The problem when you love someone so much and that love is reciprocated they know when you lie. He knew. I turned to him, thinking of my mother in her in 50s and how youthful she still was,
"You will only be 50, still so young."
"But I won't age well," he said with a smirk, "so everyone will think I am 70, at least!" It is a running joke we have, that we will age so very horribly. And I guess when I put it in writing it isn't funny at all and yet it always leaves us with tears in our eyes from laughter.

And somehow all that sadness that enveloped us under that night sky seemed to be washed away in laughter and talking about how horribly wrinkly and old my poor husband will be at the age of 50. Through all our years together sadness and fear often weaves itself into the lives were are creating together and yet it has made our bond stronger knowing our days may be limited and that the future is always uncertain.

Saturday, March 11, 2017

My Fitbit Is A Liar

The other day I wrote about how my fitbit proved I was a liar. Apparently, my fitbit isn't so honest either.

I was getting ready for bed the other evening and had just finished my treatments. I was going into the kitchen to take all my evening pills when suddenly my fitbit vibrated and I got a notification on my phone that I had completed my workout goal for the week. Perplexed as to how I reached my 5 day goal when I hadn't even worked out that day, I opened my app to find I had apparently rode my bike for 20 minutes that evening. My fitbit mistook the vibrations from my Vest as the movements used while biking.

Although I found this mixup humorous, it did make me think how nice it would be to have an exercise tracker that could also keep track of treatments and medications!

Wednesday, March 8, 2017

Kaylee Chatter Part 4

Kaylee woke me up one morning and I was having such a hard time getting out of bed. Kaylee was standing next to me scolding, "Don't be dramatic, just get up!"

She sometimes confuses or combines words. My current favorite is "disastrophe".

"Was everything, like pictures, only in black and white when you were a kid?" Hey, I am only 32!!

"When the very first baby dinosaur was born who too care of it because it didn't have a mommy?"

Kaylee loves wearing my clothes, my jewelry, my shoes, basically anything that belongs to me she wants to wear. One day she came out in a dress she owns that looks just like one I own plus some of my jewelry, "Abra Cadabra, I am mommy!"

Monday, March 6, 2017

These moments in time

Dear Kaylee,
There are some moments in motherhood that I wish I could freeze time and relive over and over. At this age right now, motherhood is so much less grueling than when you were a baby. Sure, there are still bad moods, and the ever growing "attitude" and moments that can be tough, but the day to day workload of diapering and feeding and rocking and calming two year old tantrums are all a distant memory. I find my moments with you, as a kid, rather than a baby so much more relaxed. I held on to your babyhood so tightly because my love for little baby Kaylee was so strong I couldn't imagine that I could continue to love motherhood as much as I did when you were an infant snuggled in my arms. Oh, but a mothers love doesn't know how to regress, it only grows and grows.

One of my absolute favorite activities to do with you these days is read to you while you keep busy doing art work. When you were three I started reading kid chapter books (Ramona!), but as you got older you became more and more interested in the chapter books I was reading for myself. I joined a book club about a year ago and you often asked for the details of the books we were reading. Your interest in my books continued to grow and I found myself reading excerpts of the book club books I was reading. As long as you found an activity to do while I read, you wanted longer and longer excerpts. Now, you beg me to read my books to you while you busy yourself with crafts. Last Saturday I read almost 100 pages to you in the course of a day. Every time I tried to take a break you would beg me to continue.

Of course, my sweet sensitive child, I need to edit or omit parts because you are only four! You pay attention at times and at other times I know your mind wanders which makes it easier for me to skip over parts, improvise, or "lose" my spot only to pick up again a few pages later. You have rejected bedtime stories in exchange for listening to me read whatever I am currently reading.

This, my dear girl, is the parts of motherhood that make me thankful for the here and now. It is easy to look at old pictures of you when your cheeks were chubby and your hair still held tight curls around the nape of your neck and miss those sweet and tiring baby days. These magical moments are especially amazing because I know we will never have to leave them in the past. These traditions we can continue forever. Eventually, we will swaps roles, you will read chapter books to me! And even when you grow up and move from my home, we can read the same book no matter how close or far you live and we can discuss the books over coffee or, if distance requires, over the phone.

My sweet girl, I feel so very lucky to have you in my life and as each day passes my love for you just grows and grows. Thank you for going on this adventure called life with me and daddy. You bring so much joy to our lives and we can't wait to continue to watch you grow!


Thursday, March 2, 2017

You Know You Have A Chronic Disease When

A few days ago I went to the eye doctor to get a new prescription for contacts. I was filling out the forms they give you to fill out while you are waiting for your appointment. Easy enough. And then I got to the line that asks if you are on any medication. IF?? Wait, if? I sometimes forget everyone's life doesn't revolve around their medication schedules.

I quickly checked the yes box and went to the next line to fill in my medication list. The line they provided was 4 inches long. 4 inches!!  How do I fit 12 medications on a 4 inch line? Oh right, most people don't take 12 medications and in fact a lot of people can skip that line entirely!

You know you have a chronic illness when you need extra sheets of paper to staple to the back of your intake paperwork to fit your medication list.