On a (much) lighter note

Playing a board game with Allie tonight, I told her  remember at no one like a sore loser. She quickly replied, "Then try not  lose this time"!

Kids keeping it real.

If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be?

This was a question posed by one of my Liebster award-givers. I was thinking about it over the weekend and found the real answer (i.e. Not Catholic Guilt!).

If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be?  

It would be to have a diagnosis for Boo. It wouldn't magically fix her or earn me money. It might earn an enterprising young med student his degree, but it wouldn't "fix" Boo.

It would however, provide a compass. It would answer if we have Boo in the right therapies. What her prognosis would be. If she will continue to grown at her own rate or remain a peanut. If she will live alone, assisted living or need 24-hour supervision. Will the remaining hole in her heart remain benign or will she need surgery. Will she continue to turn blue in the cold or will she be able to play outside if there is a chill in the air.

I don't have concerns for Allie. I know that she will find her niche in life. That she will be happy and successful in whatever she puts her mind and dedication towards. But I am concerned that Allie will be responsible for Boo after we are gone. I know that Allie will live on her own. When she is 18 and going to college. If she doesn't go to college then when she gets a job. Either trajectory, it will be just that. A trajectory.

With Boo I don't know if or when she will plateau. I question her life span. I wonder if I am doing enough to set her up for success.

Her genetics and neurologist tell me that the science will be available in the next 3-5 years to tell us "what" is "wrong" with Boo but not what it means. We might know that XAB chromosome is damaged but not how it will affect her. That might it might take another 5-10 years to know her prognosis. By that time she will be 15 years old. And then it will be more of what we have done than what the science says which will have impact on Boo.

So, if I could have a wish that wouldn't magically fix things it would be two: One, for a diagnosis and two for patience to wait for one.



 

Not an easy morning

Today Boo woke up on the wrong side of the bed. Well the floor, actually as she had fallen off her bed and onto the floor. But still, not a good start. She still isn't feeling well and it snowed last night.

Boo does not like snow. She told Allie, I NO LIKE (see another sentence, she is making progress). It was only a dusting of snow, it should not have wrecked her morning. But combined with the fall out of bed (the fall was less than 3 inches, by the way) getting ready for school this morning was not fun.

For any of us.

As I am running after everyone trying to get out of the house and be on time I lost Boo. She was hiding with Bailey our crazy puppy.

At least they were out of the cage this time, right?

Isolation?

I have heard that moms with special kiddos isolate themselves because they feel that 'normal' parents won't have empathy, patience or understanding. We really haven't done that with Boo, but we had Allie first. So the relationships were already established. We are also lucky that we have a tight-nit group of friends who can go six months without speaking to one another, but in an instant pick up where we left off. (Establishing Girls Night In also helped)

So maybe we "special parents" are not isolating ourselves, but rather being isolated by those who do care about us (and I do believe they do). I think they isolate us for a couple of reasons. 

The first is that they do not want to burden us with their own troubles. They worry we have too much on our plate and feel guilty adding more. These friends do not get that we need to feel more than Boo's mom/therapist/taxi driver/pharmacist. This I know to be true, in my case. A friend is going through a divorce and didn't feel she could burden me. I don't think that friends understand that I have to be more than Boo's mom. I need to be Kerri. As much as I need to lean on them, it has to be a cooperative exchange.

The second reason is scarier to me. They do not want to "be" us. They do not want to look at their child and wonder that there might be something wrong. That they are lucky and (your know some do) feel that our children are spoiled/misbehaved. They want to see the perfection of their own children. Never realizing that our kids are perfect too. Some feel guilty for their 'perfect' family. Others feel self-righteous. And still others feel that there might be something wrong with their child, but if they are not exposed to Boo and my out-there with her struggles they won't have to admit it.



I count myself lucky that I have a circle of friends who love us because of Boo, not in-spite of her.  What is your opinion, Do we isolate ourselves or are we isolated by those who once were our friends?

Quiet weekend? Yeah, right.

We had the best weekend. It just wasn't quiet and relaxing. 

On Saturday we had dinner with friends. There was a dinner I didn't have to cook, dishes I didn't have to do, good friends and wine. Added bonus, I managed to kick the kids butts in Twister (at 42 I still got it!).

On Sunday, a day I was sure going to be a day of rest. Well....

Allie got invited over to her Crafty Aunts after Church. Husband decided to go to the movies with friends. (Zero Dark Thirty. He couldn't understand why I didn't want to go!). It was just Boo and I. I decided to tackle Allie's room. It was a disaster area. 

You know what they say about good intentions right? Well, they haven't tried to clean a room with Boo and a crazy puppy. But we did it. It is clean. Then I had the bright idea of surprising Allie by putting glow-in-the-dark stars in her room.

Picture it now....me, a step-ladder and Boo. Who do you think won?

CRASH!

And Boo laughing: MOMMA BOOM! AGAIN!!! (I am thinking woo hoo a sentence as I lay under the step ladder)

I see a pedicure in my future for next weekend. Who's in? 

Wow....

This week I received four Liebster Awards. I am overwhelmed by it all.

I started blogging as a form of therapy. I needed an outlet for what I was feeling, my struggles and my joys. Life with Boo has been eventful to say the least. I thought it would just be about Boo. But Allie keeps things so real that the blog became about her too. (She is kind of a scene stealer)

I stumbled on Love that Max thanks to a top blog award in Parents Magazine in 2011. Ellen's writing spoke  to me, but it was really thinks to her Friday link-ups that I began discovering that our family was not alone. I know, at some point, we all think we are in the worse situation ever. I frequently comment that how I keep my calm is seeing other families in waiting rooms.

But those families, I do not know their struggles or joys. They are just faces you see in waiting rooms. With the Friday link-ups I found people, not exactly like me but going through this special world with grace and humor. Humor is a must for me.

While I thank Kristi, Misty, Mama and Alana for the recognition, I really thank them for their blogs! Without them and the blogs I passed my award onto, I would still feel alone in this overwhelming special world. In October when Michelle hosted 31 for 31 Challenge I joined up. Not because Boo has Down Syndrome, but because the techniques that are used for DS Children work for Boo. It made me see, once again, that although Boo is undiagnosed she shares a lot of traits as kids with DS, Autism, Sensory issues and (ew) bowel issues. 

Just like every person is different, every special child is a journey in and of itself. Where we find commonality is with the struggle to get our children the tools they need to live life to the fullest.

So keep reading and commenting! Your advice, experience and humor help me navigate this world.

Thanks,
Kerri

And the holy crapness continues

Thanks to Mama Meerkat for giving me a Liebster Award!

It's so pretty

Since I already established that I am a rule follower, here it goes! My questions from Mama:


1. What got you first interested in blogging? To me, it was a therapeutic outlet. I had finally found moms like me and realized I could connect more if I shared what we are going through.
2. If you could take a vacation anywhere, where would you go? Africa safari
3. What is your favorite genre of music? 80's hair-band rock. You know how when Def Leopard comes on and you still scream the lyrics at the top of your voice? That is me in the car next to you!
4. What is your favorite hobby? Hiking
5. Are you a morning person or night owl? I am a mid-day person
6. What is your favorite part of your day? 8pm, when both girls are in their rooms and the glass of wine is poured
7. Have you ever gone scuba diving? Nope. I tried to snorkel once and thought I was going to drown.
8. Are you a cat person or a dog person? Dog
9. How do you feel about flightless birds? I feel bad that they haven't figured out how to use their wings. Wings would be so cool.
10. What is your favorite thing to cook? Spaghetti sauce, from scratch not a jar and then Calzones with the leftovers
11. Did you think these questions were a little weird? Nope, I just wish you had to answer them back :)

I knew better

I knew better. I swear I did. I should have listened to my gut rather than my bank account. Boo was up all night. Runny nose, sure. But more importantly she was constipated (you can file that part of the story under TMI). 

I sent her to school anyway. Because I had to work. Because I, again, put work before her well-being. Of course, husband did too but I think he is exempt from that rule. She lasted 2 hours before the school called me. They know and understand her bowel issues. But this was different, they said. 

So I left work and picked her up. I walked into the crazy puppy had destroyed Allie's fairy house and peed the floor. Karma, bit my butt I guess. The rest of the day was spent in this position. The only position Boo could find comfort.

I'm thankful Boo doesn't hold a grudge. 

Holy Crap x3

Wow. I just realized that people read my blog and like me. A Boy Named Silas is a boy who we should all try to emulate. He just doesn't seem to get down. And his mom awarded me with a Liebster.

I'd like to thank my mom for teaching me
how to read and then write!

I do not want to bore you with 11 more things about me. But I do want to brag some more about other bloggers!

Have you read I can Say Mama?  Not only is she not Martha Stewart, she is a real person who sees the best in life.

Another favorite is Michelle at Big Blueberry Eyes. I love that she is so proactive in the Down Syndrome Community. And also that she shares tips that seem to work with Boo :)

So here are my question's to answer from Silas' mom!

1. Think of the day your child received his or her diagnosis. What is the first word that comes to mind? Boo doesn't have a diagnosis. After 4 years we do not know why she suffers from Booitis (my pet name for it). I think at first, though when told she would be "special" the first word that came to mind (is sadly) despair.
2. Who is your favorite doctor, specialist, or therapist for your child and why? I don't have a favorite therapist, they all rock and have become great friends. My favorite doctor would be our primary pediatrician. Probably because he comes to the office in flip-flops if you catch him on a weekend.
3. What symptom of your child's disability breaks your heart the most? Constipation. Because there is no way to relieve or explain her pain.
4. What symptom of your child's disability is actually somewhat endearing? Her stubborness. She just WILL NOT give up
5. What is something your child is REALLY good at? Hugs. She seriously gives the best hugs.
6. In three words, describe how you have changed after becoming a special-needs parent.  I gained patience.
7. How has having a special-needs child impacted your spiritual life? It made me question more why God lets children suffer. Even though Boo suffers much less than most. (I still don't have an answer)
8. Would you take away your child's disability if you could? Why or why not? I think I would. Because just like I would like Allie to be a Harvard Grad, I want Boo to have a life without pain or difficulty.
9. What is the most disrespectful thing anyone has ever said to you or your child? I have been lucky. No one has been really disrespectful.
10. "One thing I wish more people realized about my child is ..." That she will not 'grow out of it' and "become normal" and we are okay with that.
11. If you were to articulate all the wishes you have for your child, what would they be? Seriously? How much time do you have? For both girls I want them to be the best they can be. If it means Allie becomes a Harvard Grad, bonus. If it means Boo goes a day without having to work so hard, even better.

Thanks again, to Silas's mom. Her blog rocks and you should totally check it out. I would renominate her, but I think that is against the rules!

A Holy Crap Moment

I am actually speechless. A little overwhelmed, a lot grateful and well mostly speechless. (My husband would never believe I could be speechless). I was nominated for not one, but two Liebster Awards. One from Kristi @ Finding Ninee and the second from Misty @ Meet the Cottons (she has another blog, too that I love called Take it or Leave it which you should totally check out).

So here it the deal. With the Liebster Award I have to do some work. Not just brag about my girls or vent about the world. The first rule, is done I send a heartfelt sincere THANK YOU shout out to both Misty & Kristi (sounds like they should be twins, doesn't it?). And I have to show the beautiful award.

Okay, I am so impressed that I figured out how to do show the award!

And now the easy part, bragging about the blogs I love and rely on to keep my sanity and sense of humor.  A Liebster Award is an acknowledgement that your blog rocks from another blogger. Okay, probably not the Webster's Dictionary definition, but what I believe I to be true about the following blogs. It goes without saying that Misty & Kristi are in my top 7 but since I already gave you those links, here I go....(in no particular order, I go to these all daily)

Big Brother, Little Sister and the Baby first, because Coop is freaking adorable. And second how can you not love to follow some one who lives half-way around the world, remains upbeat and has three kids with the best names possible!

Anybody want a peanut? I love how Jen is brutally honest about her families struggles. I like knowing that although my Boo doesn't have autism we face the same type of hurdles. I found her blog when I thought she was quoting the Princess Bride to describe her life! 

Musings of a Marfan Mom, I confess to not even knowing what Marfan Syndrome was before discovering Maya. I enjoy how her blog includes her own struggles, her sons' and now her adoption journey. It is life, complicated and she seems to excel at it!

From across the other pond, Looking for Blue Sky. Partly because she seems to get my sense of humor and partly because I love the Irish :)

Ever feel like you could live the dream? Go check out Susan at Trout Towers. Her kids are perfectly normal, it is the one blog I read that has nothing to do about special needs. Even though her kids are normal, she has a unique bent on life.

A new find, is livenowandzen although I have no idea how to pronounce it. But trust me, anyone who can apply my favorite all time movie (The Princess Bride) to this special life we lead is a rare find!

Last but not least, Flannery over at The Connor Chronicles. Again, we seem to have the same sense of humor. I love how she looks at her son and sees a kid with autism. Not an autistic son. And yes there is a difference.

Now that the bragging is done, here I need tell you 11 things about me. You might not find them interesting, but rules are rules.

1. I am a rule follower.
2. I believe in disciplining my kids.
3. I do not believe that just because Boo is Boo that means she can be a holy terror. And neither can Allie but my patience threshold with her is lower.
4. My kids eat healthier than I do
5. I wish I had straight hair
6. I love to read. Just no particular genre. Some days it is Percy Jackson and some times it is War & Peace
7. I refuse to read 50 Shades of Grey because my mom  and Tia's step mom told us it made them hot
8. I have only told 2 friends about this blog
9. I love Irish Pubs, but I don't drink beer (in fact I have never had one!)
10. I think kids should go to school year round. Not that I don't love them. But working and having to find surround care sucks.
11. I sometimes take the long way home so I can have 20 minutes where I don't have to be polite, nice or talk to anyone.

The next part is tricker, because I was nominated by twice I have to answer twice as many questions (sorry if you are bored). 

1. What is your secret dream? To travel around the world
2. What does your significant other not know about you that a friend does? Just about everything! Including this blog. I told him once, in an Irish Pub, but I don't think he remembers
3. If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be? This question is impossible! I think it might be to exorcise my Catholic Guilt complex.
4. How would you describe your personal style? Trying to be fashionable but failing miserably
5. What three words do you think your closest friends would use to describe you? Funny, Tiny and Fierce
6. If your house were on fire, and your family and pets safe, what three items would you attempt to save? My antique china doll, Boo's stuffed puppy and whatever cash was lying about
7. Do you believe in plastic surgery? Not for me, but like abortion not my call for you.
8. What’s number one on your bucket list? To hike the Knife's Edge
9. If you had one hour of secret free time, how would you use it? I would play Words with Friends and get a better score
10. Beer, wine, mixed drinks, water or soda? Wine, Pinot Grigio please if you are pouring
11. Are you afraid of the dentist? Hell yes
12. Name a food that you would not eat as a child, but enjoy as an adult. Lobster (my mom told me I didn't like it because we couldn't afford it)
13. What was the last movie you watched or the last book you read? Last movie, American Reunion (sad, but true) last book Threat Vector by Tom Clancy (does it count if I am in the middle of it?)
14. What is your favorite Girl Scout Cookie and why? I don't have one, although my Husband is addicted to Thin Mints
15. Do you have a favorite movie soundtrack and what is it? I don't think I do
16. Are you "a little bit country" or "a little bit rock and roll"? A little of both, I have them on my radio presets
17. Do you think it's weird that I sort my dirty laundry? I don't think it is weird, but sometimes the smell is bothersome
18. What is your favorite ice cream topping? Fudge
19. What word do you almost always misspell? Anything with "i" before "e"
20. Do you have pets? Crazy puppy
21. Words to live by. I love you no matter what
22. Are you a social butterfly or a recluse? This is tough, I used to be a recluse and now seem to be a butterfly!

HAHAHA this is the fun part, now my nominees have to answer my questions:

1. If you could change one thing about yourself what would it be?
2. High heels, sneakers or flip flops?
3. The Beach, the City or the Mountain?
4. Who is your favorite singer/group?
5. If you could vacation anywhere (expense is not a consideration) where would you go and why?
6. Do you mind that my blog is sometimes snarky?
7. What is one thing we would be surprised to know about you?
8. Favorite, guilty pleasure, TV show?
9. Favorite book or author?
10. Do you admit to having a favorite child?
11. If you could replace your life with one from the Disney Channel which show would you pick?

Wow, this was harder than I thought, but a lot more fun. Thanks, as always for stopping by. I hope you come back soon and learn more about our life. Kerri

Birthdays

From StoryPeople.com

I usually don't like acknowledging my birthday. But having Boo walk around the house saying HAPPY DAY puts a whole new spin on it. 

Driving Miss Allie

Allie talks. A lot. Sometimes it is mind-numbing and you feel your ears kind of throb. But you have to pay attention. Because once and a while she slips something important in there. Like her life's plan.

The other night I was driving her to her riding lesson, typically a half-hour drive. For a change it was just the two of us, the minute her butt hit the seat the mouth started moving. Because I am going for mom of the year I offered her use of the IPOD. I could have a quiet moment or two, right?

Wrong. Allie went into a soliloquy about what she wants to be when she get older. She started asking about how much the test was to be a vet and did she have to do a lot of math to be one. We went on and on and on about the different types of vets. I explained about college and yes there was math involved. But there is math involved in any job.

Allie: Except if you are just a mom, right?
Me: Nope, because Mom's get stuck helping their children with the homework. (Yes, I said it: get stuck!)

After riding, she got back into the car and told me she thought about it some more. She has decided not to be a vet. But that her new husband would be one. (quick aside--I have no idea who the old husband is or what he did for work!). But Allie is going to be a therapist.

Me: What type of therapist?

Allie: An OT because they get to do everything. Boo's OT does speech, PT and OT with her and that is the most fun therapy.

But the conversation, of course, didn't end there. Allie has it all planned out. See, Allie figures that Boo hates OT because it isn't a fun place to go. There is too much going on. So Allie's new husband is going to redo their basement as the perfect OT room. She has decided that if "special needs" kids think they are just going on a play date at someone's house they will not cry. She will have mats, a ball pit, a bounce house and everything Boo might need.

Me: Boo? 

Allie: Of course, Boo. She and all her friends from school will be my first patients. My new husband will let them pet of the animals he takes care of so they can have more OT than normal. They will tell all their friends to come to me. I will have fun, be rich and my new husband worry about the math.

And OT's get to use IPADS!

As we got out of the car and went into the house she told me, "Yup. I am either going to be a vet, an OT or a Princess."

....all of this lead me to wonder, does Allie pay any attention during her riding lesson?

Tag your it

I do believe the girls are tag-teaming us. Allie is usually my sleeper. It takes her a while to get to sleep, but once she is there all is quiet. Except this week. On Saturday she was awake from 2am-5am. On Sunday Boo was fussing from 3-4a. On Monday it was Allie's turn, Midnight-3am. Last night it was Boo's turn.

So I have a plan. 

I will initiate my plan in 15 or so years. When they are in their 20's before they have children and have to be up with them. But after they are through college when they can sleep through their classes.

I am going to call them, or go to their house, or if they live across the country hire some one to knock on their door and wake them up at 2am. Talk to them until at least 4am. Then go home and nap. Because by the time I am 60 I will no longer need so much sleep or be used to the deprivation, right?

Then I will tag one of you to do it to your non-sleeper. Who is in?

Did you grieve?

The other day I was asked if I had ever ‘grieved’ for Boo. I was completely taken aback by the question. Why would I grieve when my child lived? Of course, the person meant did I grieve the child I thought I would have (aka “perfection”).

The true answer would be, no I haven’t grieved. But not because I am a glutton for punishment or in denial, but because I accept—most of the time anyway—Boo for who she is. My sister-in-law thought that maybe I had so much trouble over the holidays because I hadn’t grieved. What she didn’t realize was that I never blamed Boo for my feelings. Nor was I upset that I couldn’t buy my 4-year old appropriate gifts and instead went with therapy based ones.

My problem was that I was feeling guilty and (I admit) kind of overwhelmed, depressed, and feeling that I suck at being her mom because of my own shortcomings. Not because of Boo’s. Yes, I struggle when I see typical 4-year olds. But that is not about grief. It is about wanting my child not to have to work so hard.

What I tried to explain to my SIL was that if Allie didn’t get into Harvard (hey, a mom can dream) I am going to be upset because she worked so hard to get into the school (again, a mom can wish). With Boo, I get upset because she works so hard to achieve things that are normal milestones for other kids. And at her birthday or the holidays I feel bad for Boo that she doesn’t get the magic like other children her age.

Most days, I am able to put Boo into perspective. Whenever I get too into the self-pity mode, I only have to look into the waiting room of any therapy or doctor’s office. There is always a child who struggles are more intense. Which that Catholic guilt in me makes me feel guilt that I actually think: thank God that isn’t my child. Come on be honest, I am not the only one! And I am sure some parent looks at Boo and has the same feeling.

Although they probably don’t admit it for the world to judge!

I am not sure what the grieving process is, or if I am in the midst of one and just don’t know it. I do know that it is exactly what makes Boo a ‘special’ child that I love the most about her. While I wish her struggle wasn’t so difficult, I know it is exactly her determination that makes her the girl that we know and love.

So I don't believe that I have grieved. And I do not think I want to. I would rather rejoice that Boo is Boo. 

All is quiet....

The sure sign that some one is up to trouble is when a peep is not heard.

 

I am wondering if this falls under the category of physical or occupational therapy?

It was definitely not speech therapy they were both too quiet :)

I blame Boo for my failings

It is day 9 of the Diet Coke saga. Yes, I am counting. So far I have been a total failure, and I blame Boo. First she hasn't been sleeping well since the company left and school started back up. Second, while she did not get the flu she did get a cold. Which she then passed on to her loving, Diet Coke addict, sleep deprieved mother.

So I decided a wean was in order. Forget cold turkey, who can just stop doing something they love? And I love, LOVE, did I say LOVE, Diet Coke in a can. Not in a bottle, not by a fountain, not in any other form. (Okay, that could be a Sam-I-Am rhyme!). But I do not drink coffee or tea and need caffeine. So on Saturday I broke down and bought a 2-liter. Convincing myself that I would only drink it on the weekend and let coworkers deal with the sleep deprivation. I also drank the 2-liter over 2-days so there was none left over to take to work on Monday morning.

I've been too busy to go to the store to buy more, so far that mode of denial is working. It's Thursday and I've gone 4 entire days without slipping.

Although I could use a ice-cold can right now....

Does your child know what to do?

After the tragedy in New Town, CT, many of the parents in our school (and I am sure yours) worried about their children’s safety in a new way.  Last night our PTA held a special meeting with our town’s safety officers. I have to say, I am beyond impressed. And that is knowing that I have an in at the fire department.

I never talked about the shootings with Allie. She came home from school and told me that the teacher had told them a bad man had broken into the school and tried to hurt the children. But not to worry because their school would be safe (exactly how she could promise that is beyond me). Allie told her classmates not to worry, that she knew the fire fighters and they would come and save them. Tall order for Daddy, but he is up to the task.

She also said that doing the lock down drill wasn’t scary. It is like a fire drill. A fire probably isn’t going to happen but kids need to know what to do so they aren’t scared. (Out of the mouths of babes, right?)

Last night was interesting for many reasons. The first, most irritating was that for all the brouhaha on the PTA Facebook page and e-mails from parents questioning if our school was safe enough only 15 people showed up. Come on people. If you are that concerned about your kids show up for the meeting (Yes, I have a snarky side).

Another interesting factoid was that our police, fire and school departments have been ‘drilling’ for different types of scenarios for over six years. That we parents just didn’t know what was involved. Until CT and we decided we wanted something done. Their response was an affirmative. Not only must something be done but they are training all the time to ensure the safety of our children. Things go on at school that we just do not realized.

But here is the thing. With all the training and drills for the children. Kids still don’t know what to do. A question arose from a parent about what would happen if a child was in the bathroom during a lockdown. The answer: the child would leave the bathroom (or hallway) and go to the nearest classroom. From there they would follow the teacher’s direction. So, of course I asked Allie if she knew what to do. Her answer: Well, first I would “finish” (that girl cracks me up she is so literal) and then I would hide under the stall.

So the kids do not always know. Or they are told but forget. And that shouldn’t surprise anyone. Allie forgets what happened at 10am this morning if she is asked at tomorrow at the same time. As parents it is our job to find out what the procedures are and reinforce them at home. Our safety team (yes, we have a team) told the PTA the most important thing we could do to help them, is after a drill to talk to our kids and provide feedback on what worked, what was scary/confusing, did the teachers act like it was a joke or important.

As I said, I didn’t have “the talk” with Allie about New Town. But that doesn’t mean we don’t talk about safety. And now I know how to direct the conversation.

Boo, is another story. We were told at her school that children with special needs (be it autism, undiagnosed, CP or mobility issue) were taken to another location. This was in deference to the fact that kids with autism, for example, if placed in a high stress situation with a lot of excitable/scared kids are more likely to shut down, elope or react in a way that is harmful to themselves or others. Since Boo spends half her day in an integrated preschool and half in the special needs program, I asked her teacher what would happen if she was in preschool. Would she be transferred with the preschoolers or go with the specials? The teacher didn’t know. She ‘assumed’ that Boo would stay with the preschool. But she would find out, for sure. Personally I am not too worried. Because Daddy would be responding with the fire truck and Boo has an aide that not allowed to leave her side. But what about the other parents who might not know that their child will be moved across town for their safety?

This is a long blog post. And I hope you are still reading because this is important. I urge you to get involved either with your PTA or safety team. Do you not have a safety team (EMS, police, teachers, school nurses)? If you need info, e-mail me and I can put you into contact with our EMS officer.

But here is what else you can do:

• Find out where you child is going to be at in the event of an evacuation (in New Town it was a fate that the fire station was next door).
• Find out what the procedures are, and ask your child if they know as part of a conversation not an alarming quiz.
• After a drill, send feed back to your PTA or school principal. Let them know how your child did. I promise they want to know.
• If you have a child with special needs, find out exactly what training has been taken (do they practice lifting wheelchairs down stairs with a child—not an adult) in them?
• See if you can join the team or what you can do to help in an emergency situation. Do they need people to help keep track of kids, reunite them with their families, etc…?
• And lastly, if your PTA hosts a safety meeting make sure you go. Be as involved with your child’s safety as you are their soccer practice (I warned you I was snarky).

It is does take a village to keep your child safe. So be an active member!

I play favorites

When I had Allie I swore I was one and done. I had a great job, a husband who tried to be wonderful, a well discplined dog and a seemingly perfect child. I did not think I had the capacity to love a child as much as I love Allie. I did not think I would have the patience for another child. Because, let's face it, having a husband and a dog is like having a more children. (I do love him, though, I swear!).

Then five years later, Boo appeared. I should start off with saying, that while not planned, Boo was not a 'mistake' or a reason for despair. Once we learned I was pregnant we were ecstatic. Okay, wait a minute, I admit I cried to my boss--but seriously I was ONE AND DONE! On top of it all, I am so not a baby person. Give me a toddler a tween and I can be the perfect mom. But babies? Pass the baby please to the maternal-type to my left or right.

What I learned, especially in the NICU, was that I could love another child. But that would not mean that I loved Allie any less. In fact, having Boo made me love Allie more. It made Allie grow up, and not be spoiled (I admit, she was spoiled). It showed me how great a girl Allie was, one who would teach me how to accept Boo for Boo. 

Although I am not a "baby" person (trust me, I used to change Allie with gloves on) I sometimes think she is God's little joke on me. "Oh Kerri, you aren't comfortable with babies? Have one for 3 years". But I have risen to the challenge, yes totally patting myself on the back. And have relished in the baby years that passed to quickly with Allie.


And I was right. I do play favorites. Allie is my favorite shopping companion, the one who shares my sarcastic wit, the one I want to talk in an opera voice for a day (yes, we did). Husband is my favorite, start a fire and pour a glass of wine favorite. Bailey is my favorite to go for a walk/run with and Boo? She is my favorite snuggle, the one I could hold all day and not get tired. Boo is my favorite quiet moment, Allie my favorite crazy moment, Husband my favorite 80's hair band moment. And Bailey my favorite unconditional love moment.

I think it is okay to pay favorites. Because life is never what we plan. Allie planned on the perfect sister, and got it. I planned on having another child that would fit in with our life-plan and got Boo. Bailey just wants someone to pat his head. And husband, well he hopes for more wine & fire nights. 
 
In those intervening years since I first learned I was pregnant with Boo, the well-mannered dog died of old-age. And idiot that I am, I convinced my husband to get a puppy.  And life got more complicated. But you know what, I may play favorites but I wouldn't change a thing.

Maybe just one.....

Fate

I'm going to be honest. I typically do not believe in fate. I believe that we shape our own destiny based on choice. I struggle with divine intervention, as I believe first God doesn't care who wins the Superbowl, second He  would be a loving God and wouldn't allow Sandy Hook-type events to happen and third that God would realize I am ill-equipped to handle any child let alone one with special needs.  

But every once in a while something happens that makes me ponder how control I do have over my life, how much is left to fate and divine intervention.

Boo has yoga at J's house on Saturday mornings and Allie recently began Pony Club at the exact same time (poor planning on my part, I admit). Usually it is not a problem and when my husband is on duty I can move yoga to a later time. Last weekend this was not the case and so yoga was rescheduled to New Years day. Again, what was I thinking? I came to my senses and just cancelled it all together. We had a pajama day instead.

I just received a text from J, the yoga instructor. Four of her five children have been diagnosed with the flu. Not just a cold, the actual flu. Not one of her children but four of them. (Okay, seriously how unfair is that!!!)

So I am again pondering. Was it just my overscheduling my girls or divine intervention or fate that yoga was cancelled and we escaped Boo being exposed? Because I know my girl's luck and exposure would equal a hospital visit.

Just in case, we are definitely making Mass this weekend!

So Long 2012

The New Year is here and I am very optimistic. Crazy, eh? Until I look at 2012 and realize it really wasn't as bad as all the news channels make you believe. In fact we learned quite a lot.

For example, In Feb 2012 we went on a ski trip with another family. Allie learned that she HATED ski school and wondered why the heck she had to go to school when it was February VACATION. But my man and I got to ski for two whole days as one of our friends is a non-skiier and fully prepared/competent/caring enough to babysit Boo at the condo while we realized that our 40+ year old bodies do not quite ski as well as our 20 year old bodies used to.

In April we went to VA for Easter where we learned that you cannot hide chocolate eggs outside. They melt. I mean, melt as in becomes chocolate syrup. M&M's lied to  us. Well not really. They might not melt in our hands but they sure did in the plastic egg.

In June I started blogging and learned that I am so not alone. There are plenty of moms out there being tortured by their family, in-laws, husbands and children. And yes, we all love our children, husbands and in-laws. They just drive us nuts sometimes. Blogging has allowed me to laugh, cry vent and learn. I have "met" (can you meet people you have never seen in person?) so many great people since then. All of us on a similar journey with different speed bumps.

In July I learned that Boo loves the sensory mat her aunt made her. I also learned that if you leave it on the deck the crazy puppy will think it is a water bed and bust it open trying to get the toys.

In September I learned that it was okay to be an idiot once in a while. As long as you accept and love your child more often than not. ALOT more often than not.

In October, I learned to be an advocate when Ann Coulter really ticked me (and a gazillion other people) off.

In November I learned that it was not only possible to travel to Disney with Boo, but enjoyable. I also learned that you can get Allie all the way to Orlando without her ever knowing she is going to the Happiest Place on Earth.

In December we all learned that the World is a pretty dark place sometimes. But the deaths in New Town does not define those families, the children's lives did. (I refuse to give any more attention to the killer). I also learned that while the world is sometimes dark, Boo's smile and Allie's wit will always brighten my day.

So bring it on 2013. We might have ended the year on a bleak note. But as I hold onto my family, I know that it will all be okay. Happy New Year everyone!

Photo taken by: Lisa Perez Fine Art Photography