New Year's....

Usually I forgo making New Year's Reservations. I mean resolutions. I figure why set myself up for failure? Instead I make New Year's Wishes. Since my wishes haven't come true  for 2012, I am so surprised that George Clooney did not show up on my doorstep to whisk me away, I have decided to make a combination list of wishes, hopes and resolutions.

1. I resolve to begin running again. I wish for motivation and hope for time in order to "just do it"
2. I resolve to be a better friend, to be there more for those who need it. I wish that they do not need it too often (because, really who wishes misery on their friends?), but hope they know they can ask me for help.
3. I resolve to give up Diet Coke. Cold turkey. Beginning Jan 1st. I hope I have the willpower to abstain. I wish my family patience in dealing with me being grumpy in the morning.
4. I resolve to spend more time hugging my girls and less time screaming at them. I wish for more patience and hope they learn behave like those perfectly behaved children my friends brag about.
5. I resolve to read more at night and spend less time watching Reality TV. I hope for the Real Housewives not to be so addictive and wish to find new authors who will enchant me.
6. I resolve to less time venting and more time rejoicing. I wish for less roadblocks for Boo and hope Tia continues to remind me how lucky I am.
7. I resolve to keep a cleaner house. I hope my family learns to clean up after themselves (especially crazy puppy whose dog hair is driving me nuts!) and wish for a cleaning lady.
8. I resolve to find balance in my life, between work/family/Boo's therapies. I wish for George Clooney to show up at my door and hope he says, Don't worry darling I've taken care of everything. See the maid, the live in therapist and I have a gazillion dollars so you no longer have to work. (sorry hubby!)

What are your resolutions, hopes and wishes?

My favorite day of the year

Today is my favorite day of the year. Well, tonight actually. Tonight is the night that Tia and I have our annual girls night out. Just the two of us, no children and no husbands. Not that we do not love both. But this night we go out to dinner, share a bottle of wine and just catch up.

I hope everyone has a fabulous weekend!

New Rules

Having survived the 2012 holiday season, I have determined new rules for Christmas 2013:

• The person who gives the gift must put the gift together. This includes, but is not limited to: horse stables, Barbie houses and the Euro-grow-with me chair. (By the way, the chair is the BEST GIFT EVER. Just a pain in the knees to put together.)
• If you are going to buy said gift that requires a  degree in rocket science to put together and you are not available for assembly you must provide the wine.
• Nephews who come for Sunday brunch should say thank you. Not ask why there isn't enough corned beef hash. (Because honestly, YUCK I didn't think anyone would be eating it anyway).
• Nephews should not ask, while in the midst of cooking the brunch and then cleaning up for me to teach them how to drive a standard. And then be surprised when I say not today.
• If you are going to participate in our Yankee Swap, at least have the gift look like you spent $20. Do not give a candle that I know you spent $5 on.
• If you are going to give a gift to the girls that takes batteries and makes annoying noises do not be surprised when my husband calls your house, cell phone, office and plays the toy on it's loudest setting for your pleasure. Especially when it is a piano that plays Linus & Lucy. Non-stop once Boo figured out how to hit the button.
• And do not be further suprised when he calls you at 2am. (yes, yes he did)
• And lastly, if you are going to give Allie a make-up kit with 72 shades of eye shadow do not be surprised at the revenge gift I am planning for next year!

What are your rules?

We did it!

We did it! We survived an influx of company, three different Christmas celebrations, Christmas Eve Mass and Christmas Day.

We survived playing Santa and putting toys together. (My husband and I have a new rule...who ever buys the gift puts the gift together!).

A good time was had by all, even if we are all exhausted.

Poor Allie. She & Boo have been sharing a room while the company is here for the week. Boo usually wakes up early and then (generally) will talk herself back to sleep. Except now she is in Allie's room and sees Allie when she awakens. So poor Allie has been awoken every morning at 6am. And, thank goodness for older sisters, reads to Boo in her room until she hears the adults get up.

Except this morning. Because today Boo woke up at 3am. And thought it was playtime! By the time I realized that I wasn't dreaming and I was hearing Boo shout, ALLIE BOOK with joy, I ran to Allie's room. Boo had managed to climb onto Allie's bed, stand on-top of her and drop the Princess Book onto Allie's head. (see what physical therapy can accomplish?)

Poor Allie! Who is such a good sport. As I took Boo from the room, Allie said that it was okay, she would read to her. Until I told her it was 3AM go back to sleep!!!!

It's official...

I have become the Clark Griswald of our family.

I hope you and yours have a Christmas full of peace, love and understanding.

And for all of us moms with children home on Winter vacation, I wish you to receive patience and wine.

Trust me, the wine will help with the patience!!!

Merry Christmas :)

Mom the year....so not

This is really in poor taste with what happened in CT and to the poor families who are truly suffering.  But oh well….here I vent!

Last night we took the girls on the Polar Express. A friend works it as Santa and was able to comp some tickets for us and his grandchildren who are Allie/Boo’s age. The other kids had so much fun. Boo was okay. First when the elves came she freaked but they were very nice elves and she ended up high-fiving them until Santa got on the train. Then all bets were off. She freaked! She was fine when he was at the end of the train, away from us, but when he talked to the kids she started screaming for the elves to “COME ERE” (away from Santa). She got really nervous that they would be hurt, I guess. Then he walked to us and tried to talk to Boo. She tried to hide in my shirt. She didn’t cry but she was terrified.

The thing with Boo is that she doesn’t cry, she retreats into herself. Which to me is more heartbreaking. Santa left the train and all was well.

Until this morning….when I left the house wearing the wrong shoes, forgot my badge, went to CVS to find out that the insurance rejected Boo’s medication (CVS is awesome though and is figuring it out for me), get to Boo’s school to find out that this morning is their Christmas play and that Santa would be making a visit. So here I am at the school, mom of the year not knowing about the darn play, wearing the wrong shoes. So I send a quick text to work saying I’m going to be late. EXCEPT I am not, because the aides tell me not to stay. That Boo won’t realize I am there anyway and they know I have to work. Then the aide I love, tells me it will probably break my heart to see Boo not doing anything when all the kids are acting out the  gingerbread play and Boo just stands there. That they promise to take care of her, and when Santa arrives they will keep her in the back of the room and if needed they will go for a walk during that time.

So I left.

And I HATE THIS!!!

I hate that I was relieved not to have to sit thru the freaking play. But more that I didn’t want to watch her sit there. That I am a jerk of a mom who didn't sit and support my child doing the best she could. I also hate that I don’t want to be here, at work. I WANT to want to be at the school.   

I suck at this.

I have TWO presents for Boo for Christmas. If I am being honest, if it wasn’t for Allie I wouldn’t even have Christmas. I mean I would still buy stuff for family, decorate and be in the spirit. But I wouldn’t have to deal with this whole crap load of crap feeling that Boo doesn’t WANT anything. She is content to have her puppy. Heck, I would probably be more in the spirit of the holiday if I could just relax and not let other's expectations affect my own.

But because I know if she doesn’t have something from Santa that is going to open a whole lot of questions from Allie. On top of it that family is making me feel like crap because they think I should buy stuff just to fill the tree (for both girls) regardless of the fact that one I cannot afford it and two that it make me depressed to see all this stuff just sitting there and Boo not using it at all—her room currently has 2 baby carriages, a high chair and cradle that were Allie’s that she is not interested in at all.

The rational, sane part of my head/heart reminds the flipped out side that last Christmas Boo wasn’t even talking so be happy with where she is. And I am, I promise.

But I am also sucking at this!!!!   

I'm a coward

This morning I sent Allie to school uninformed. I did not discuss the horror in CT with her this weekend. Oh, the news was on periodically. But the news is so out of her interest zone that she didn't pay attention.

There was mention of the horror at Church. But again, she barely listens to the priest on a good day. If it was discussed during CCD, Allie didn't mention it.

I did not deliberately shield her from the horror, but I did not expose her to it either. And this is why I admit my cowardness. Because I know at school today there will be talk and discussion.

I am very good at rationalizing. Allie won't internalize what happened in CT. She will never think that it can happen to her. By living with Bridget and being exposed to hospitalizations, Allie already knows that bad things happen to little kids. She never has made the jump that it can happen to her. I also believe that Allie is still so innocent. How can a girl who believes in fairies ever comprehend the horror of small children being executed?

This weekend, Allie asked me if a Fairy could be special needs? For once, I was at a loss for words. Allie went on to say that she hoped to go to Never Land with Tinkerbell and see the Winter Woods. But she wondered if Boo would be able to go with her.

Since I literally had no answer, she came up with one on her own: They would sprinkle Boo with a "little" pixie dust, then Allie would hold her hand. Since Allie would do that for Boo,  of course (!) the other fairies would do the same if one of them had special needs.

Because, in Allie's mind, you take care of one another.

And this, my friends, is why I let cowardice prevail. Because innocence should be preserved as long as possible. I do know that Allie will hear about the horror in school today. I plan on leaving work early to make sure I am home when she gets there. And I hope that she continues to believe that just because horrible things happen to other people, she is still safe.

To all those in Conneticut

Lately life has been tough. The holidays, birthdays, just general Boo-ness. But my child is home. She is safe and sound.

My thoughts and prayers are with the parents and family members who are all suffering today.


Have you heard of Story People? They seem to have great sayings for every moment in life. Even tragic ones. Tia found this one today:

www.storypeople.com

 

 

 

Just as those without "special" children cannot possibly know what we go through, we can only imagine what the parents, friends and families are feeling at this moment. And be eternally in awe of their strength.

We can also hug our children and be grateful. Grateful that at this moment we have more joy in our lives than we can ever appreciate.

 

 

A pet peeve

“Oh she will be fine”

I swear if I hear that phrase one more time I may not be responsible for my actions. And to hear it from some one who is a family member and should know better? Well....I bet their definition of fine and mine are quite different!

Here are some examples of where we differ in opinion:

Boo acts like a normal 4YO—only if a normal 4YO cannot understand that I am mommy and not the nice lady in the grocery store

Boo is just a late walker—sure, most children need to use a pediatric walker for 9 months before they are able to walk independently

Boo is a late talker—oh, thank you! I will cancel the 2 days/week therapy sessions.  

Boo should be able to eat cheese if she wants to—nope, see how she is screaming? That means she is constipated and in need of relief. Have you ever heard of the Chocolate Bomb? I really recommend it.

Boo doesn’t need a sweater it’s 70 degrees—sure, she is warm now. But in about 5 minutes she will get a chill and turn blue in her hands/feet. Trust me we’ve been to the ER enough.

Just let her cry it out—this during an EEG—they were amazed that she could cry/scream/kick for an hour and 15 minutes. That 10 minute rule, yeah right!

 

What are your pet peeve statements? And how would you really like to reply?

Advice welcome~

Recently I was asked: Why isn't Boo potty-trained yet? She is 3 & 1/2

I wanted to reply: Because I like supporting Pampers. They seem like a nice company. (this was during the weekend that I became an idiot).

But the truth is, I just don't think she is ready. She cannot tell me if she is hungry, tired, bored or why she is throwing the baby doll out of the baby carriage. She cannot help with getting her pants on or off and she could in no way get herself onto the toliet.

Then I second guess myself and think that in some ways I think she might be ready. 

The other night she took my hand, said potty and walked into the bathroom. I put her on the toilet and she sat for a minute. She told me she was all done and got off. Nothing moved, so to speak. But I was so proud of her for sitting there for a minute.

Over the weekend we got together with some friends and one of the moms said to me, "Oh Boo isn't trained either? Now I don't feel so bad about K". Okay, first I was thinking wow you are holding up your 'normal' almost 3 year old to Boo's 4 year old standards--yeah Boo! But at that exact moment her daughter came up to the mom with diaper bag in hand and proclaimed "I NEED CHANGING!". So, my second thought was, wow your daughter can tell you she needs changing but you don't think she is ready for the potty?

My third thought, you jerk-Kerri-here you are judging another mother when you are so irked that others judge you/Boo. (Yes, I frequently yell at myself and call myself names).

It also made me question, again, how to train Boo. With Allie I had a deadline. Her daycare only went to an age and she HAD TO BE TRAINED by 2.9 years for the new preschool. I started early, totally improvised and remember to this day me thinking to myself that there is no way to teach some one how to use the toliet. I mean think about it. How do you describe what they are supposed to feel in order to get them to the toliet in time. With Allie I literally put the big girl panties on and she peed the floor. I remember saying to her, see what happened? If you think it is going to happen again run to the bathroom! And if you do that, I will give you 3 M&M's (yes, 3!).

It was a long process, to say the least. And we went through a lot of M&M's.

But how to train Boo? I am completely unprepared. I have no idea where to start. She has such trouble communicating, she cannot self-dress, she cannot manuever easily into a chair (even if I got a portable one). And do not even get me started on her constipation/diarrhea issues.

I do not want to set her up for failure. I also do not want to be lazy. As much as I enjoy supporting Pampers and Baby wipes, they do make life easier. Her GI doctor told me that due to her low muscle tone, potty training really wasn't recommended yet. Developmental medicine told me that realistically she wasn't capable of knowing when to go.

That has been my excuse, really. That I do not think Boo is ready.

But then she took my hand and went into the bathroom.

Boo has proven doctors wrong before. Maybe she is ready, I at least have to let her try.

Just not tonight because I have to make cookies....
 

A letter to new "special" moms

I often say that Boo is not found anywhere in What to Expect. Nothing against that book, in particular, but it doesn't really prepare you for parenting in the world of special needs. Now almost 4 years later I figure there are definitely three types of books needed

1. For parent who receive just what they were expecting: a happy, healthy baby
2. For parents who know they are going to have a special child
3. For those of us who rouse the minute after giving birth and discover that they are in no way prepared for this unhealthy, unhappy baby

All of us love the child, regardless of which category they might fall into. However, for moms like me who were expecting child number 1 and got child number 3 a little advance notice might have been helpful.

Here is a not-so-short-list of things I would tell a new mom who just learned her life would never, ever, forever, not be What She Expected:

• The NICU nurses are awesome. They will tell you to take a walk, to sleep and let you hold your baby. It's okay to cry around them, because they understand when they are not taking care of your little one they are taking care of you.
• The Doctors don't know everything. Sure, they try to be all powerful. But the amount of science out there, combined with the limited about of understanding, leave a lot of room for improvement. So go with your gut. In the end you do not have to like the doctor, but you have to respect them. So if you do not, find a new one. They are not all the same and they are all replaceable. You are not.
• Yes, eventually you will brush your teeth. Just not today.
• Therapy begins as soon as you are able to put two words together. Do not listen to those who say they are just 'behind'. Go with your instincts. If you think your child should be rolling over, call Early Intervention. Do not wait for your pediatrician to be on board. Demand it. Honestly, they probably want you to start therapy but are afraid of hurting your feelings. I had one doctor tell me that most parents "aren't ready to hear" that their child is delayed. So they wait for us to tell them.
• Yes, it is possible for a child in their first year of their life to meet more doctors in one day than you have in your entire life. In fact, they may meet more doctors, nurses and technicians than the number of people at your Town Hall Meeting.
• No your arms will never tire of holding and carrying your baby so she doesn't throw up. But the Snuggly is a fabulous invention. If you do not have one, beg for one. Then ask some one to teach you how to put it on without throwing out your neck or (yes, I speak from experience). Added bonus of the Snuggly, you get to brush your teeth.
• You thought you became a parent, but in fact you became an advocate. 
• Find your "safe person" and create your village. You will need to have some one to be strong once in a while when you need to crack.
• And if you can, find another mom who has been in the trenches longer than you. Learn from her and then pass that knowledge on to the mom that comes after you.
• You will become SUPERMOM. Defender of the innocent, advocate of the needy and the most loved person in the world.
• This is still the best thing that will ever happen to you. After all, the most treasured memories are the hardest to come by.
• You love this child, and it will all be okay. 
• Cracking is okay. It will make you stronger in the long run and show you what you can handle.
• You will be okay. I promise. Your life has changed, and this is not the child you planned. And that's okay. You probably weren't the parent they were expecting either.
• Your child's milestones will not be found in any book. But you will more accurately remember them. So when you are sad that your little wonder isn't walking yet, remember how excited you were that they didn't have to see a specialist that week.
• Perfection just has a better definition now.

That is what I would tell a brand new parent in the NICU.

 

As if the holidays are not stressful enough?

I am filing this one under another important piece of information that is left out of the parenting manual that no one gives you. Last night Allie left a note for her Elf, Max. I am unsure if you were told about the Elf on the Shelf (it was left out of my manual). But Santa sent Allie's when she entered first grade. I thought for sure she would say, hey this is a doll.

Not my Allie. Not the true believer. This year she started leaving notes! Now not only do I have to remember to re-hide the little red bundle of joy, I have to write back! In a handwriting that is not my own. Last night, this is the note she left:

Why does Santa say I have to work harder? Does Alex like me? Do you want a dog or a cat? I got to see a whale show. what is your favorite game to play? Is there dogs at the work shop? Do you ride reindeer? Go up stairs and take a left if your at the a door go the other way. Go straight if you see a cottage go in it me and Emma decorated it for you! Do you know Benjamin Button?

I wanted to write, Well Santa says you have to work harder because you were an absolute bear to your father this morning! And to tell her that at 9 years old she shouldn't like boys. Instead, I sent a plea on Facebook to find out which of her friends had a Benjamin so I could be a good Elf and write a proper response. (How much do you want to bet it's "THAT" boy's elf?), I wrote in my left hand for about a minute and then figured if she cannot figure out that this doll isn't really going to the North Pole every night then I am going to take a chance she won't recognize my handwriting.

I am sending very un-Christmas like vibes to whomever invented this torture.

Being proactive

For the past couple of years, I have become depressed at Boo's birthday and Christmas. Which is kind of depressing in itself when you think she is only four years old! I just have never looked forward to the 'events' because, through no fault of their own, friends and family have given inappropriate gifts.

Oh, they haven't meant any harm. But people buy gifts that are chronologically-aged appropriate. Not where she is developmentally. So after every event, I would be down. It got to be that I wasn't looking forward to this year at all. Instead of wallowing (okay, I wallowed for a moment or two) I decided to be proactive.

I e-mailed any family member or friend that I knew would be giving Boo a gift. I sent a list of links and explained how the item would be useful. I included the price and a disclaimer that I knew this wish list was pricey, but since Boo's birthday and Christmas were so close together they would only have to buy one gift. Added bonus, they could collaborate on the gift. Either through gift cards or with one another.

I was honest. For example, I explained that the trampoline was not for play (well, not really) but for muscle tone, sensory and learning to jump. That I was not looking for some one to buy 'me' a chair, but a better chair for Boo to reach the table. She is too "old" for a booster seat. I want her to be a part of the table. This chair will help her with stability, etc...

And it worked. For Boo's birthday she got things she could use. Things that made a direct impact on her life. The trampoline? Within 8 days she was jumping! A year of therapy and all it took was having the tool available.

So, yes I felt incredibly guilty sending the e-mail. Like I was asking people to spend money on Boo. But in the end it worked.

What works for you? How do you get your friends and family to contribute to meaningful gifts, rather those you have to donate to another child?

Monday confessions V10

Five ways I escape....

I take the long way home from work.

Any of the Real Housewives shows.

Offering to walk the crazy puppy.

Girls night in.

PTA meetings (sad but true).