Monthly Archives: August 2012

My Village

Raising kids is tough, sure. With Allie it really doesn’t seem to difficult. I kind of took for granted the people who help make her a great, easy kid. But it took Boo to make me realize that it was more than just her parents that make Allie the girl she is becoming.
My husband, in-laws (who unlike my mom live in town), friends, Allie’s daycare when she was younger and teachers now that she is (gasp!) entering 3rd grade. All of them contributed to making her an awesome, easy child who is fun to be around. And sure, I had something to do with it too!

But I would not be able to keep my sanity without the village that keeps Boo going. Without her village of physical, speech, occupational, feeding therapists Boo would not be walking, talking and eating me out of house and home. Without her village of daycare providers who took her as their first special needs child EVER in the history of their school, Boo would not have had a loving and nurturing place to go while mom & Dad were at work. Without her village of medical professionals Boo would not be alive let alone walking, talking and playing with her sister. Without her village of the special education program thru our local school system, Boo would not have made such terrific gains this summer. She made a friend and knew her teachers names!

Without Boo’s family village she would not have blossomed. And I am not limiting that to just Allie! Boo has a great support system of grandparents, aunts/uncles, cousins and friends who are sometimes closer than family.

She is an incredibly lucky child.

This week has proven that. My mom came up for a visit, she has made my life so much easier this week. Caring for the girls so that my husband and I could just go to work without worrying about bathing, dressing, feeding, medicating Boo. She took them on adventures, cleaned my bathroom (yes, she is my favorite mom), did the dishes and picked up some groceries. And wine (yup, favorite!).

Last night grandpa arrived. Chaos ensued as Allie had her two favorite people were here (she sees new Barbies in her future) for the long weekend.

So not only should a special needs child come with a village, it should come with a great grandmother who visits every couple of months. It’s really not fair otherwise 🙂



One more day

We did it! We survived summer vacation. I know, I am a horrible mom. I am one of those moms that would vote for school to be year round with mini vacations throughout the year. Maybe if I was a stay-at-home mom I would think differently. But I bet they cannot wait for summer to end more than me! It is just so hard to keep the girls busy (with fun stuff) and then I feel guilty for not taking time off to spend with them. Unfortunately, my vacation/sick days are reserved for Boo’s appointments and some long weekends here and there so I don’t go insane.

Thank goodness Boo was eligible for a summer program. She has this week off and goes for half-days next week. Allie goes back next week and I am doing a mini dance at my desk. She, well not so much. Allie does not like school. Don’t get me wrong. Allie loves the social aspect of school, gym and recess. Other than that she would rather not go, thank you very much.

Allie is a smart kid. A brilliant reader with an imagination that amazes me. Allie does not enjoy math/tests/having to do the assignment just as the teacher described. I remember one day last year her coming home so mad at the art teacher. She did not WANT to draw the apple, she wanted to draw a princess. Why should she have to draw something so boring as an apple?

I blame myself (of course). Allie spent preschool and kindergarten in a Montessori school. She excelled under that program. But man did she work it! There is a reason Allie doesn’t do well in math. At Montessori she only worked on things she liked but never put the time in for the work. When the decision came for first grade we figured she needed a bigger pond and a lot more disciplined teaching style. Rather than going full out discipline (think Catholic nunnery) we opted for the public school.

Allie had a hard adjustment academically. Socially she is a butterfly (probably again why academics are difficult! She is too busy with her friends).  I hadn’t realized how far behind she was in the math areas. Reading though, man she reads two grade levels ahead. When you can force her to do it, then she won’t put the book down. (guilty here I let her slack this summer) 

My parents are going to be here for the first day of school. Boo’s school starts at the same time. I will be leaving them to put Allie on the bus and then escape to work.

Where I will be doing my happy dance that the girls are back in school. I will also start the acceptance speech for mom of the year. 

Phew!

First, a quick update. The plague seems to be lifting.

Second, my mom is in grandma heaven. She had Boo to herself all yesterday afternoon while Allie & Husband rested. She hadn’t seen the girls in about 3 months. An eternity according to her and Allie.

Sometime I look at Boo’s life as a war. Made up of little battles that she has to win in order to make gains developmentally. When I am in the trenches I forget to look at (and sometimes acknowledge) the progress she has made. I am too focused on the next objective. But since my mom hasn’t seen Boo since she began the new SPED program she notices the changes right away. She is amazed how far Boo has come since May.

Of course, she is going to take Boo and Allie back-to-school shopping today. Alone. She may be wishing for the Boo who was content just to hang in the stroller by the end of the afternoon 🙂

The Plague

The Plague has invaded our house. First Boo, then me and just when I thought it was safe to disinfect the house…Allie and husband came down with it last night. I finally escaped to work this morning. My poor mother is flying in this morning. I called to warn her of the Plague. She is coming anyway. She misses the girls and hasn’t seen them since May.

I cannot wait for her to see the changes is Boo. She has progressed so much with the summer program. The rest of the family is coming later in the week. But my mom wanted some Grandma time. With Boo on break and Allie still on summer vacation, mom has a lot of visiting planned.

I did warn her about the Plague. She is coming anyway.

Gotta love your mom!

Boo is still sleeping. She did not have a great night. She is not longer throwing up, but has a slight fever. Since I have a more flexible work environment (Hubby cannot just show up when he can!), I elected to let her sleep in and possibly go into work later in the morning.

But let’s face it. I probably will end up having to take the whole day off. I don’t like leaving Boo when she is sick. Especially since the littlest thing can send her system into a tail spin. It’s so much more difficult when Boo is sick. When Allie is not feeling well she can tell me what’s wrong. Usually she just wants to lay on the couch and watch TV. Boo, well she cannot tell me what hurts. Sure I figure her belly is upset. I’m not an idiot (the vomiting was the first clue!). But that has ended and now she is slightly feverish.  She hasn’t turned blue yet, so I am not expecting a fever spike. Although I have learned to expect the unexpected.

I hear her stirring…

This was so not in the parenting manual

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift.  As I lay Boo on the couch to go to work, she throws up one more time….all over me.

Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.

And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is ‘exhausted’ but ‘surviving’.

And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.

But you need the paycheck. So you put your big girl panties on and go to work.

And think to yourself, I’d really like to meet the author of that book, because they have no freaking idea of what to expect.

Pro-something

First, let me start off by saying I am pro-choice because I do not believe I have the right/authority to tell anyone (other than Allie) what to do.  I also do not believe that any idiot senator should be able to tell a woman if she does/does not have the right to terminate her pregancy for any reason.

BUT….here is my pro-life statement: Boo. What if you were told that your newborn would spend her first week in the NICU on oxygen and she (and you) might not survive the stress of that first week? Let alone the next 8 admissions that first year alone.

Boo just home from the NICU had to be constantly upright to avoid aspiration

Or that a month later you would spend your birthday in the hospital since your newborn was sick for some unknown reason?

Boo 1.5 months old spending Mommy’s birthday at CHB

What if you were told that their lfirst year of ife would be a battle to survive?  That she would undergo an endoscopy, bronchoscopy, MRI’s, EEGs, all before they turned a year old? She would be eventually be on the champagne formula, Elecare, because she could not tolerate anything else.

What if they told you that you would spend most of your days in therapies and have to see up to 15 specialists a year? That your daycare, when she was finally able to go, would call you that she was screaming for some unknown reason. That they could not calm her because it was obvious she was in extreme pain. But no one knew why.

What if they told you that although most babies know how to drink/eat it would take you 2 years in something called feeding therapy to get your child to be able to eat without choking?

Or that just when she was learning to walk she would be faced with spinal surgery. You spent almost 3 years in physical therapy and 9 months on a pediatric walker just trying to get her to be ambulatory and now they were going to cut her back open?

What if they said that at 3 1/2 YO she would bang her head uncontrollably when frustrated because she cannot communicate?

What if they told you she would turn blue for no reason, but not to worry because they don’t know why but it doesn’t seem to distress her.

Would you abort?
Then you haven’t met Boo!

Boo cannot point to Momma in a picture but she can pick her sister out of school bus.

Boo now chases her puppy around the house. WITHOUT her walker.

Boo has 15 signs, 35 words and 4 phrases consistently.

Boo LOVES pool therapy.

Boo now out-eats her sister.

Boo loves us and we love her.

If you aborted Boo, you would not be blessed.

So while I am still pro-choice for you. And I think that Senator is an absolute idiot, by the way. But for me, the “choice” would be so much harder. Because I have had the absolute pleasure of loving Boo.

We survived

What a fabulous LONG weekend! The weather was perfect, Allie had a great time hanging with her friend, husband was with campfire/beer/friends so he was more than happy. Boo did great! She wore her neon for the Neon Pot Luck and happily danced on the table to Zac Brown.

The entire campground got to meet Boo as she toured every campsite with a puppy and asked for a hug. After the first couple of rounds they told me she didn’t have to ask just come on over. Which she did, every hour.

On Friday night, since we were camping with 50 of our closest friends, we had a theme-night pot luck dinner. Some one picked neon as the theme. We are still not speaking to her…

 

 Allie showed us how to be stylish in neon

And Boo, while she was more than stylish…

 

And was the first to dance on the table…

 
The only hiccup were the fireworks. Boo did not enjoy them, at all. So we strolled back to the camper while Allie and husband stayed to watch the show.

This morning I had to wake an exhausted Boo for school. She slept thru breakfast where I basically placed milked-soaked Cheerios in her mouth. She did wake up during her bath!

We are already signed up for next year, this time for a full week. I did not warn the other campers 🙂

We are outta here

We are heading to a campground with power. With 50 of our closet friends.It’s like staying at the Ritz for us. Usually we camp and it is a lot more rustic. But we are going this week and camping in style.  Well, neon for the theme night pot luck dinner. That’s a style, right? 

I have 4 dozen whoopee pies made, 2 dozen chocolate chip cookies and 3 dozen half-moon cookies made for the pot luck. And three bottles of wine. That should be enough, right?

Allie is over the moon. There will be kids her age there. Even the big kids are great, allowing the younger ones to tag along. 

Boo has no idea what is going on. But she has unpacked the suitcase a million times. Okay, I exaggerate. Only a thousand.

Crazy puppy is happy. He is not going camping but to a friends house to be spoiled rotten without any Boo’s using his back to head-bang.

Husband is excited. It’s not his type of camping (too many amenities) but he will be with 50 of his closest friends. And there will be beer, fire and fireworks. 

I’m stressed. I already told you once about my lack of packing talent. Combined with knowing there is a river RIGHT NEXT to the campsite and knowing Boo has a tendency to well, wander. And I have to wear neon for theme night. My outfit looks like Olivia Newton John in Let’s Get Physical. Except in yellow.

But with the wine and whoopee pies, it should be fine. Right?

I will post pics next week. Until then stay sane 🙂 

 

 

Slowing to Boo’s speed

Last night Allie had a sleep over with her Gram, Husband was working so it let Boo, crazy puppy and I alone in the house. Without any distractions. Serendipitously, Boo’s therapy got canceled at the last minute. 

It was kind of awesome.

We got home right after school, rather than hours later (well after a stop for Gelato and Pinot Grigio) . We had french toast for dinner. We sat on the stairs for 10 minutes after Boo told me to “sit down” “here” and patted the seat next to her. Later in the afternoon she sat at the kitchen table as I finshed the dishes and called me over. “Come ere” “sit down”. From the child who was only had 15 words 3 months ago her demands were music to my ears! So I sat. down. here.

Normally I am running around like a crazy person. Especially after working all day. But last night I let Boo set the pace. Unlike the rest of us (at least in this family), Boo is content to just sit. 

And bonus, she was asleep by 7pm. Alone in the house, with a sleeping Boo, content pup, gelato, pinot and a new book.

Simply, awesome.