Conundrums’

Oh man, an incident report was in the school bag today. I hate them because I know it’s been a bad school day and I wasn’t there for my kiddo. He’s cried and mommy couldn’t hug or kiss better. Quite frankly it makes me feel like a sh*tty mom. I’m a mixture of anger, frustration, embarrassment, and sorrow. Apparently the substitute TSS didn’t show up on Friday. Don’t even get me started! The bus was late picking him up (again, let’s not go there), he arrived a half hour late and missed story time. JD has transitioning issues and they are made worse when he misses an activity at school.

I understand where the teacher is coming from. I get it, I know she’s doing the best she can, underpaid, understaffed, over ratio with attendance, I like his school and the staff, he’s had phenomenal progress while there, but dammit I’m looking forward to the new school in September. I hate that I feel like my kid is an oversight amidst the other special needs classmates. And I can’t help but feel like somehow we get the short end of the stick just because he’s labeled high functioning. Then I feel like a bigger sh*t because I’m whining about the care/attention he’s getting when there’s other kids who need more care/attention. Am I making sense? But I can’t focus on the other kids, because well they’re not my kids. And I can’t focus on being fair to everyone, because well they’re not my kids. My only goal is to be the voice and support for my kids. But then I feel selfish.

So either way I feel like a sh*T. And that my dear is how I’m ending this.

Conundrums’

My friend Hon

Dear Jess:

Tomorrow is your funeral. It seems surreal to me. If I stop and think about it, I’ll burst into tears. I keep checking your facebook page to see if you’ve updated it. People keep tagging and posting pictures of you. Damn it, how is it right that you’re gone? The last time I saw you, you were doing better and out shopping for Tori. That was last summer. You’d just finished up a treatment. We caught up and instantly it was as if we’d last seen each other the day before. But that’s just the type of person you were.

I thought for sure you would beat the f-ing cancer. The last 3 years we’ve kept in touch via facebook or the occasional time we bumped into each other at stores and such. The kids and I always prayed for you, every night. On Sunday, the day you passed away, I said to myself; "wow, I haven’t talked to Jess in a bit, let me see how she’s doing. We don't normally go this long without talking." I was going to shoot you a message but I forgot. I left facebook open to your page. The next morning I woke up to the news on facebook. Oh sweetie, I cried. I hugged my kids close and cried. I called my husband right away and told him "my friend Jess died." I am so sad. Those words seem inadequate. They don’t adequately describe the painful loss. The world is a little bit dimmer and sadder without you. You were most definitely a kindred spirit and someone I valued as a dear friend. 

I wish I could tell everyone what a wicked sense of humor you had, how you taught me to call everyone “sweetie” and “honey” because that’s what you called me. My girls are “sweetie” now and most of my girl friends are hon or sweetie now. I got that from you. I’d tell everyone about your great smile and how you’d stick out your tongue, make a face, hand gestures, and you’d go kick some a## if you had to.  How you started off being a co-worker and became a friend. I'd tell them how happy you were when you got pregnant and how we shared breastfeeding stories and advice. How we shared 1st time mom experiences, when our babies turned 1. This isn't right, it's not right that I am going to my friend's funeral. There are no answers and no reasons to justify this loss.

I so wish you were with us now. I hope the prayers, positive energy, friendship, and love offered comfort. You will be missed. I will miss you my friend. Be at peace. And Jess-- Fuck Cancer, I'll miss you hon.

Love,
Sweetie

1st Apraxia Awareness Day

Apraxia of speech is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though:A.D.A.M.

• The request or command is understood
• They are willing to perform the task
• The muscles needed to perform the task work properly
• The task may have already been learned

Information courtesy of http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004944/

We’re new to Apraxia land but it is what is keeping my 2 year old daughter mostly silent. She says a handful of words. But her smile, her giggles, her cute way of saying "Stop" and putting out her hand to keep you away-- they're all so cute and negate the need to speak.

Apple Doodle is a twin, born prematurely at 36 weeks. She was diagnosed with torticollis at 3 months and we’ve visited a battery of specialists at the Children’s Hospital of Philadelphia. Our list includes: the neuro surgeon, a hematologist, an ENT, a developmental pediatrician (ruled out autism), and the neurologist. Apple Doodle has received physical therapy for torticollis and mild hypotonia (low muscle tone); occupational therapy to aide with the feeding problems & fine motor skills; and speech therapy at 12 months.   

For us, the first 2 years of my girls’ lives have been a road trip to a diagnosis for Apple Doodle. Our lives have been full of weekly therapies through early intervention, extra therapies through private providers, lots of drive time in the car, lots of coordinating schedules for 3 kiddos. This house runs well when it is on a schedule and routine. But it also runs better when my husband and I take time out to reconnect. We strive to go on a date once a month but usually it’s more like every 3 months.

Perhaps because Apple Doodle is still so young, having just turned 2, her lack of speech can still be perceived as “normal” to outsiders. It’ll have much more of an impact as she gets older. But for now, we’re doing all we can to get her what she needs. Apple Doodle is so smart, gregarious, and sweet. She doesn’t say much most days, a handful of words. Her speech is inconsistent. She actually says a lot without speaking. When she’s sitting on my lap nursing, she’ll pat my stomach or chest and say “My mommy.” Of course in typical 2 year old fashion, she’ll also grab a toy and hit her brother with it while saying, “Mine!” Perhaps her best and most frustrating trait is that she’s so independent, she wants to do everything, she wants to learn everything, but please let her do it! Apraxia, smaxia. She may be quiet, but don’t count her out.