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.

 

Fruit Roll ups, gloves, and baseball!

Baseball clinic was a success this morning! Sports and JD seem to be antonyms. We’ve tried indoor soccer, gymnastics, even a special sports meet up. To date most of his athletics have been demonstrations of avoidance and stubbornness. He's run away, he's ignored everyone & yes, he's even resisted help. Just like my emergency note on my doors warn.

Arguing in the car, arguing getting out of the car, cajoling once we got there. 1^st off it was loud and JD needed to get used to it. Ear muffs would've been good. He did it eventually! Yes, he was hyper and needed constant redirection. But he tried it! He participated! He loved catching. Not so much batting. He needs to be a catcher. Why?
JD: " I want to wear his costumer to school mom!" Catcher Gear! Oooh! 

My dad came, stood watching unseen. My dad was definitely teary eyed, I admit I had moments where I unabashedly dried my tears off my face. My dad gave me a hearty kiss on the cheek and hugged his boy. He might love his grandson more than his daughters. As it should be. Their love is a wonderful thing to see.

Playing ball may not seem like much to the outside world. For me, this is a phenomenal morning.A new activity where he participated and he tried. Sure I bribed him with fruit roll ups and ice cream. He did it, he tried! Huge! Proud mom. Too bad he’s looking like he’s a rightie.

BTW- The facility had the special needs baseball clinic free of charge. FREE! Yup! Tons of volunteers who donated time and effort to make it a great event. They had police motorcycle for the kids to ride, meet and greet with police officers, even a visit from the Philly Phanatic. What truly made this day special was seeing all those kids, some like mine, participating in a sporting event for the very 1st time. Seeing a boy in walking canes "run" the bases, seeing a toddler in a specialized seat wheelchair batting his 1st at bat-- special moments and an honor to witness. Watching my boy high five and fist bump with the volunteers and other kids-- priceless. Thanks, so much Sluggersville!

Heart broken

Would he have had blue eyes? Would he have had Cems dramatics and flair. Would she have shared Apple’s infectious giggle and smile?

I’m trying to keep busy today. I want to fall into a fetal position and break down. I placed a heavy duty pad between my legs, shoved my heart back into my chest and went grocery shopping with the kids simply to get out of the house. We came home and made playdoh. Let’s just say a whole bag of flour was used and my kitchen floors are now literally scrubbed clean. But they had fun and their smiles, their giggles, their mess, was solace to this mommy’s sad heart.

You know we’re fertility challenged and a positive pregnancy test, those sticks you pee on, are foreign to me and were completely useless with our IVF experiences. February and March passed without needing to break out feminine pads and my back didn’t hurt days before my aunt flo arrived I went “hmm, what can this be now?” “Where the Hell is Aunt Flo?”

I was cautiously excited. A positive stick pee test later and I giddily and rather nervously told my hubby over the phone. I took another test over the weekend and this one had a faint line but was negative. Maybe a faint sign of a vapor line for positive. Hmm, what the hell? You’d think they’d have come up with something that sings you a song and says “You’re fing pregnant for real” instead of sitting on the toilet and holding it up to the light and wondering “wait is that a line or my eyes wanting a line to show?”

This morning I woke up in pain and Aunt Flo showed up. 1^st time since January. Early January. After almost a bag full of pads this morning, my OB was called. She feels its most likely an early miscarriage, come in later for blood work and ultrasound to see if I need anything done to “clear up everything.” To clear up everything—all I see in my head are baby feet and toes.

Baby #4 may not have been planned, may not have been meant to be, but the mere possibility was enough to have me love him/her. The mere possibility was enough for me to hold my paunchy flaccid tummy and wonder whether it looked like a chicken embryo or if it resembled a tadpole. Last night I slept cuddling with my husband, his hand lying comfortingly, protectively over our pseudo baby tummy incubator. And I was happily thanking God for blessing us with a miracle baby.

I am devastated. Someone-- I don’t know who—God? Life? Whatever, anything, something, has kicked you in the stomach and pulled out your heart and stomped on it and shredded it too and then salted it for good measure. I am heartbroken.  

All about the Neuro visit

How to manage the fear? We’re going forward in our quest for a diagnosis for our Apple Doodle girl. She has the sweetest smile and the most infectious giggle and exuberant laugh. She’s been getting physical therapy since she was 3 months old. Since then we have added occupational and speech therapies. This week we went back to neurology. I think she was under 6 months old the last time we went there. I expected that he’d order an MRI. I did not expect him to say, “Yup, definitely have some motor apraxia going on.” You know, but you don’t REALLY know. Except now we do know, sort of. Now we need an MRI. For the next couple weeks I’m going to be scared sh&tless.

After he said “apraxia” I stopped understanding the neuro. Suddenly he sounded remarkably like Charlie Brown’s teacher. Some scary words were spoken: brain damage, apraxia, muscles working fine (wouldn’t we need a EMG for that?), brain function, lots of other “brain” something. As he’s grabbing his bag to go to another patient he asks: “Any questions for me?” Unfortunately we have to wait until after the MRI to get definitive answers. I’m picking up our coats and I’m wondering how I’m going to call my husband at work and tell him the news gently. Gently?!!

Manage the fear. Keep it contained. Keep it in the back of my mind and keep going. Fight back that fear. I have to stay strong for my babies and for my husband. Blink away the tears, take a deep breath, regroup, BREATHE for the love of God, and focus on the important things.

The road to a diagnosis is painful and it is just the beginning of the journey for my baby girl. This is not what we had planned for our babies. It is so very sad. The tears that flooded my eyes in front of the elevator were for my babies, not so much for me. The tears in my husband’s eyes weren’t for our sadness. They’re for all his fears for our babies. Take it one day at a time and never lose hope. It is all we can do, the life of a special needs parent.

Fairness & Forgiveness

Forgiveness and fairness are funny things. Everyone wants to talk about the unfairness of it all, whining about how unfair life is, blah, blah, blah. But no one wants to forgive anything or forget the lessons learned. Because if we forgive, does that make us the fool? No one wants to trust and be that fool again.

Yesterday I had to take my daughter to the neurologist at CHOP. You see a lot of sick, and I mean really sick, kids on the elevators. Passing a full lobby of bald babies is sobering. You know what I realized? If you don’t forgive and move on, you’ll be stuck with that bad energy and it is toxic. I don’t want to be defined by the mistakes of others and the hurt they caused. I don’t want to be that bitter person who says they’re stronger for learning their lessons when in fact they’re being defined and shaped by others wrong doing & the past. Those types of people never seem very happy to me. If I die tomorrow, I want to die happy, surrounded by love and happiness. I don’t want to die longing for someone I once knew.

I am me, I am loyal, I am fiercely protective of those I love & I’m not afraid to speak my mind. I try to be fair to everyone, I laugh at inappropriate times during movies, I fall asleep reading a lot and sometimes I screw up. It is hard for me to trust again after I have been deeply hurt and its equally hard for me to apologize when I screw up. But above it all, I am honest. I don’t like liars.  If people don’t like my honesty, well that’s on them. I don’t play games. Ever. When people start lying and playing games, I usually decide that’s about the time I stop trying to keep them in my life. I don’t want that around my kids, they have enough challenges to face without adding somebody else’s craziness to it.