I sometimes wonder if by not having a diagnosis for Boo-itis our lives are easier than others. This past weekend when we had our semi-family reunion a cousin was telling me the story of a co-worker whose twins had a horrible syndrome. The daughter had already gone home to Heaven at only 3 years of age and the son was likely to go home by age 6. The parents had lived with the knowledge that their twins would most likely not survive long in this world and felt blessed by the short time they had. L asked me if the doctors have any idea what is wrong with Boo (in a nice way where you didn’t want to slap the person). I explained that the doctors say Boo is an enigma, that she just doesn’t add up to what science knows to be true. But that, finally, I am okay with the not knowing if Boo has X syndrome or Y whatever. Because at the end of the day, no child comes with a user’s manual.

Visiting the hospital with Boo I constantly think to myself, there by the Grace of God do I not have to travel that road. I have an acquaintance I met in the waiting room of Boo’s therapies. She knew from ultrasound and lab testing that her child would be “special”. She believes that because she and her husband were able to prepare for a life with a disabled child, she had it easier than us. We had no idea that Boo would have to be such a fighter, nor that we would learn that being a parent also means being an advocate.

Boo’s difficulties (to my mind) are manageable. She is happy and relatively pain-free. Boo is growing, taking her time about it, but growing. She hasn’t been hospitalized (almost) a year. Boo is learning, again at her own pace. Boo is just Boo.

By the doctors not being able to tell us what to expect, we can expect the world for Boo. At her last neurology appointment they told us she would be eventually labled intellectually disabled, no known cause. However they cautioned us to live life as we have. To continue to push Boo to her potential (just as we do Allie) and to continue to harrass her medical specialists to provide the best care possible. The neurologist (who has had Boo since the NICU) admitted at this appointment that she never thought Boo would walk or talk. That looking at the child she was in her first year, they never expected her to make the gains she has. But they were determined not to undermine our desire to acquire all the therapies possible.

So even the doctors expect the world for Boo.

Sure I continue to wonder why and stay up at night wondering what could have prevented her having such a hard road to travel. And I will continue to Google and generally harass Boo’s physicians and therapists for answers. I do wonder if finally getting a diagnosis will help Boo or hinder her progress.

We are undiagnosed, and still okay with that. But that doesn’t mean we stop looking for answers.

I am not a pretty runner. Nor am I fast. I look like one of those cartoon figures huffing and puffing. I haven’t run in about a year. Last year I ran for stress, and to make sure I didn’t kick the neurosurgeon! I did a 5k and that was it.

This year I haven’t run at all. And my thighs are showing it. So I figured if I had a goal that would get my butt out of bed in the morning. I downloaded the 1/2 marathon training schedule and today I set out on the first step.

And failed miserably. In my defense, I also had a dentist appointment and ran afterwards. With a mouth full of Novocaine. I chose a popular bike path because I am competitive and figured if there was some one watching me I wouldn’t walk the 3miles. I didn’t count on the heat and humidity of mid-morning or the fact that after having 2 cavities filled my face would be so numb that I would not be able to swallow the drool running down my face.

It wasn’t pretty. At mile 1.5 I slowed down and took a sip of water. Which in my numbed state poured down the front of my shirt. At mile 2 I started walking. At mile 2.25 I got embarrassed because a teeny bopper with a blonde pony tail lapped me. She looked like an advertisement for hot pink spandex.

I slowed down to a crawl at mile 2.75 and walked the rest of the way. Face numb and lungs burning. Maybe a 1/2 marathon was too ambitious.

I know what you would say: Ya think? So I texted the always reliable Tia that maybe training for a 5k was a more reasonable goal. Always the supportive one, she didn’t say YES YOU IDIOT. She is so kind, she said not to give up and a 5k was a great goal.

The day got so much better (insert sarcastic voice here). To reward myself I went to the supermarket to get some sushi (I know what you are thinking, sushi from a supermarket GROSS but the one by me does a fab job). I passed the nachos and thought my husband would like those. Reached up to the top shelf to get the Queso sauce and BAM!

Two glass jars of Tostidos Cheese Queso sauce fall onto my head and then onto the floor. On the upside they did not break until crashing to the floor. On the downside, my friend’s teenage daughter had to clean up the mess. I don’t think I can ask her to babysit again for quite some time.

I really should have just gone into work after the dentist rather than taking the day to myself.

It’s been a while since my husband & I have gone out alone together. We have this great Irish pub we love. Since I was dying for a hamburger I convinced my husband to ask his mom to babysit so we could go out to dinner. Alone. Just the two of us.

Well we are really not go at doing that! At Boo’s therapy he mentions to her OT that we are going to this Pub. She loves that place, so next thing we know…..

Sitting at the bar and Boo’s therapist walks in. Not just one of them either…five of them! We had a great time. It was cool because we didn’t focus on Boo (other than how cute she is). We talked about their lives, what was going on in one of the other therapists lives, their crazy parents, everything under the sun.

I always joke that since Boo has been going to this center since she was 3m old, we are no longer patients but family.

Last night proved it 🙂

Today is Sept.11th. (yup, I know you know!)  Married to a firefighter, I sometimes think 9/11 means something different to me than others. Kind of like being a parent evolves once you realize your child is special.

I always took what my husband did for work lightly. I mean, yes he is a firefighter but it was a remote thing to me. Kind of like my job, he has no idea what I do at the office all day. It doesn’t mean we do not respect one what the other one does. It is just a given. 

I go to my job, he to his. He used to tell a story that until you were a firefighter you had NO idea what they did. He was right.

We had been dating for over 5 years when 9/11 happened, engaged for almost a year. In our time together he had been electrocuted in a fire (he smelt burnt for about a week–not a pleasant smell), been dropped 2 stories in a training drill, been caught in a backdraft and had thrown out his back when he was lifting a drunk on a stretcher and the drunk started flailing. 

In all the years we have been together, he had mishaps but nothing serious. I know what you are thinking…electrocution, not serious? Well it wasn’t like he was admitted to the hospital or anything. He had an ‘incident’ at work, went to the ER and came home. If I remember correctly, he waited until the rescue brought some one else into the ER and then had them drive him home on the way back to the station. He didn’t even tell me about it. A friend called me at work, told me he was sent to the ER. I went home to put the dog out (not crazy puppy–before his time) and there he was on the couch. 

So until 9/11 I knew that my future husband was a firefighter but I never worried about it. It was just where he went to work.

I am sure I am not the only one who remembers exactly where I was when the Tower was hit. I was at a meeting and the waitress came running over to tell us to come to the TV. The meeting ended and we went back to the office (where coincidentally we had just gotten cable TV for the waiting room) where we watched the 2nd Tower hit.

My future husband called me to say he was on the short list to go to Boston if it was hit. As a member of the confined space team he would be one of the first deployed. My future brother-in-law is on FEMA, he was sent immediately to NYC to begin search and rescue. 

My future husband wasn’t allowed to leave the station for 3 days as we all waited for the next calamity. Thankfully that didn’t happen.

But I will never forget sitting at home, watching the coverage, seeing the men and women walk into a building to save others. Or watching them run into the building as it fell to save their brethren. 

This morning as I was in the shower getting ready for the day my husband called in that he was leaving for a structure fire. The girls and I went on with our morning, getting ready for school and work. Just as we were leaving he came home safe and sound.

Few of us can imagine having the courage that these brave men and women had. But my husband does. Thanks to my husband and those like him how risk their lives so we don’t have to!

There is nothing like a weekend stuck inside due to crap weather to get you over a pity party. (And I fully admit that last week’s post was a pity party of epic proportions)

With the cold, damp weather the girls, crazy pup and I were basically stuck inside. Husband, of course (!) was on duty so I had to get creative. We made brownies, played bubbles and walked the carriage. Boo kept throwing the baby on the floor!

 Then the girls and pup decided to play hop on mom. Well, that quickly got out of control. So when the energy just got too pent up….couch volleyball was created.

(note to self, take socks off before diving for the ball on the hardwood floor).

 While Allie and I were competing in the couch volleyball Olympics, Boo was moving all of my kitchen chairs into her room (I guess she got bored of pushing the empty carriage).

Am I the only one perturbed by the underwhelming coverage of the 2012 Paralympics? Not only did our athletes not receive the daily medal accolades on the evening news, the closing ceremony wasn’t even presented on the prime time networks!

For the US Team, 20 of the athletes were veterans. Some of them wounded in Iraq & Afghanistan! Like this great man, Navy Lt. Brad Snyder. Lt. Snyder lost his sight when he stepped on an improvised explosive device while on duty in Afghanistan. One YEAR ago. Last week he won a second gold medal at the London 2012 Paralympic Games. Click “like” to thank him for his service with the Navy and cheer him on with his new Team USA. His story with videos: http://ow.ly/dxUf6

Lt. Snyder (taken from US ParaOlympics Facebook page)

Personally, I think his military record is more impressive. And further, I believe his Olympic record is more impressive than any able-bodied Olympian. Not to take anything away from Keri Walsh & Misty May, but these game have something called murder ball. In this game they have technicians to re-weld the athletes wheelchairs!

Murder ball

 The great news is, that although the Games did not get a lot of play in the US media, they did break all the records. Over $70 MILLION in ticket sales with over 2.7 attendees. Including the Royal Family. Read more about the games here: CBS Coverage

I want to say THANK YOU to all of our Olympians for doing their respective countries proud. You are the true champions!

This past week was wonderful. We had a house full of company for the long weekend, Allie is exhausted from all of kids. She (and Boo) had a great time playing with their cousins, the ones that are their ages and the ones that just act like it.

It was a hard weekend for me and not just because I did 15 loads of towels! I know Boo is delayed, that she will most probably be labeled “intellectually disabled” within the next couple of years. She has made such gains this summer in the new special-ed program and I am so proud of her.

This weekend I was taken by surprise to see just how far behind she remains. As Allie and her cousins ran around the yard, played on the bounce house, climbed all over the playground Boo tried to keep up. She really did. She was so excited and squealing. But every time she got close…ZOOM they were off in another direction.

It was great for Allie. She got to play with kids who could keep up. She ran around the amusement park with her Uncle and got to go on all the rides (poor husband was working!). Boo was content to sit in the stroller and watch them have fun.

Boo was fine. Allie was fine. I was guilty. Because instead of seeing all the gains Boo has made, I saw her flaws.

I saw Boo not catching up.

I saw people not understanding Boo’s efforts when she tried to communicate.

I saw Boo not being able to jump on the bounce house.

I saw Boo getting overwhelmed when we went to the playground that had sand surrounding the play structure.

I saw Boo not  being able to do things a typical 3YO can do. Things that her cousin (who is 3m younger) did without any difficulty at all.

Although, Boo was MUCH better behaved in the restaurant 🙂

I feel horrible.  I feel guilty. I feel like I let Boo down.

I admit to having high expectations for Boo. When they said she wouldn’t walk, I got her more therapy and a pediatric walker. A year later she walked. I have always set reasonable (in my mind) goals for Boo and never felt that as a mom I was short changed.

I have never looked at another child and was envious. I have felt that it wasn’t fair that Boo had to work so hard. That I would look at other parents and cringe when I heard them complain about their toddler getting into things. I would think to myself, if only!

But until this weekend I never looked at the other children and held Boo up to their level of development.

I have always looked at Boo and been proud. Sure I’ve been embarrassed (like that time in Church) when she acts up in public. But I’ve always been able to rationalize that those staring didn’t know Boo and could kiss my right cheek.

But this weekend, I was one of those idiots who judge my daughter.

It’s the first day of school, it’s the first day of school, it is the first day of school! This is how I woke Allie this morning. Singing and dancing.

It is amazing, all summer she and Boo have been up at freaking 6:45 in the morning. Today, first day of school? I had to wake Allie up at 7:30!!!!!

But I don’t care, because it is the first day of school!!!! WOO HOOOOOOOOO 🙂

Boo has an issue with her left foot. I am not sure what the issue is, but Boo really (and I mean REALLY) does not like socks or shoes on her left foot. She will walk around all day with the right shoe/sock on. But her left? Oh no, she does not like that at all. 

We do manage to get the shoe on in the morning, but left unattended and she has that shoe off faster than a prom dress on prom night.

She is no longer allowed to wear shoes in the Jeep, since her last left shoe ended up somewhere on the highway.

Yesterday afternoon as we sat around the fire pit, enjoying the peace and quiet of the day I heard my mom yell BOO NO!!!!! I jumped up and in slow motion watched her left sneaker plop right into the middle of the pit. 

You never realize what a fire hazard those light up sneakers are. I apologize to our neighbors who saw (and smelt) the black plume as it rose above our yard.

I will be investing in sneakers AGAIN. If only I could buy the left ones 🙂

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 🙂