Category Archives: thankful

I’m thankful for more than wine

If we were sharing a glass of wine, I would tell you I am so very thankful…

I’m thankful that it has been over a year since Bridget’s hospitalization.

I’m thankful for the teachers who continue to be innovative, patient and kind in how they teach both my girls.

I’m thankful for the friends that live through the woods who are up for a last minute dinner (and better yet, provide it!).

I’m thankful for pancake breakfasts and late night texts. Continue reading

This week

Today I am very thankful. So thankful I am participating in the Ten Things of Thankful hosted by Lizzi

1. I am thankful for the friends who got what I was trying to say when I spewed venom earlier this week. That I would not trade Boo for the world but once in a while life becomes too much.

2. For Walt Disney & Company, I understand not one more parent wants to hear Let it Go but to see Boo’s face as she watched the Ice Show? Magic. Pure Magic.



3. For sisterly love.


4. That more people got the humor of Helicopter parent than were offended. Come on people lighten up, life is too short!

5. The I Run 4 group for their dedication and willingness to provide emotional support for families.

6. For M&M’s. Lame, maybe. But they are important to my state of mind. The fact that I can just eat three and provide amusement to others is an added bonus.

7. For older sisters willingly giving up their toys to their younger siblings.

8. For the friend that took Abby for a weekend of one-on-one attention. 

9. For this video right here that shows Abby is not the only sibling who loves unconditionally. 



10. And lastly, for this moment. This moment right here when Boo was a just a little girl in love with princesses and castles. 



The fact that she just tells us to OME ERE and look at the castle and not really play with it doesn’t matter. That she just holds the three punsel (Rapunzel) Barbies stolen from her sister, meaningless. What I see here is a little girl who loves Princesses just like her older sister did. That she made Abby bring this up from the basement and place it just so in her room. That Boo WANTED this castle, relayed it to her sister and made it happen. 

Some Milestones are different than others. This one is pretty freaking cool to me. That Abby grabbed my phone to capture it, amazing and so grateful my girl is so wonderful. 

Both of them.





”Ten

TBT JUMP!

It’s Thursday so it’s a throw-back day. This post was originally published on 19-APR-2013 as part of the 5-minute series. Where you are given a word and just write, unedited, for five minutes straight.



The prompt: JUMP


Ready, set, go

Dear the Fellow that I fired, remember when you told me that Boo would never walk, talk, know us. She was six-months old. You told her father and I that she had a brain disorder which meant her brain pattern was ‘too slow’. 

I went home and cried. Then I call your boss. You know the head of Neurology. Who told me you had no right, no freaking right to tell me that my daughter might do or not do anything. She has an unknown genetic disorder NEVER SEEN before. That very rarely do you take MRI’s of 6-month old brains. Exactly what would he have compared to Boo too? 

So he told me you were off our case. We got transferred to another Fellow. An awesome doctor who believes in our daughter.

Four years later, after 9 months of therapy Boo jumped. Yes, you freaking jerk, my daughter not only laughs, signs and talks, knows her sister, her father, myself and HER FRIENDS. My daughter also walks and loves her puppy!

Boo not only loving but kissing her puppy!

And this week not only did she jump, she jumped over a line.

What you took for granted in your knowledge of all things is that you knew nothing of my daughter’s strength, joy, heart and determination. You did not know that she has a circle of people who make her more than you ever gave her credit for.

Boo jumped. And I hate that for a minute you made me think she wouldn’t.

Damn you, you made me doubt my daughter. Just once, at 6m of age. After I talked to your boss, I never did again.

Boo jumped.

END

Darn it I am out of time! I had so much more to say on this subject. Obviously I have some unresolved anger at that Fellow. But I am also thankful for the Fellow his boss assigned Boo’s care, who is now an MD. This wonderful doctor who saw the potential in Boo and never told me to give up!

TBT–Just deal

Throw-back Thursday, this post was originally published on 10-OCT-2012. It’s about the time Abby became Boo’s advocate. For real. As in stand up for her sister to adults. This was probably one of the first times I realized that Abby was a warrior sister.




Boo had a tough week, so far. This weekend was wonderful, visiting my parents. The girls were spoiled for the short time we were there. Even though we were only gone for a couple of days, it was enough to mess with Boo.

To add to her difficult week, yesterday not only did she have to travel 3+ hours to Children’s for a GI check-up afterwards she had to take Abby to an orthodontist appointment. After spending 12+ hours in the car driving home from being spoiled, to spend 6+ (round trip) hours in the car then have to pick up Abby and just to sit in another waiting room for Abby was a bit much to ask of her.

While in the orthodontist waiting room, Boo was….shall we say….exuberant in her joy over a book of puppies.  I don’t think the receptionist or the other families in the waiting room have ever experienced such exuberance. I was just happy that Boo was in the stroller (although I had a funny moment when I imagined their experience of an unconstrained Boo). Rather than being embarrassed I was so proud at how Boo was labeling the things in the book. Okay, I was embarrassed at the volume of her expression. But I was proud too 🙂

When it was time to leave, I asked if there happened to be a handicapped entrance/exit. Abby and I had to carry Boo’s stroller up 5 steps to enter the office building. The look of utter surprise from the receptionist face was priceless. Turns out, the building is not handicap accessible. Something that would not have occurred to me pre-Boo.  Now we are lucky, I could have either carried Boo into the building or she could have walked. But that would have meant that Boo would be racing around the office (as would anyone after spending so much time in a car seat). So instead, Abby helped me get the stroller up and then down the stairs.

As Abby and I were carrying Boo’s stroller back down the stairs she commented on how Boo was so loud, she could hear her way in the back of the office. I asked if the doctor said anything about it, here is Abby’s reply:

They asked if the person making all that noise was Boo and I said yes.  Then they said, wow she is really loud. I told them she was special needs–just deal with it.


Any embarrassment I may have felt faded in that moment.  Abby is right, we have to deal with their building not being handicap friendly and they just have to deal too.

Boston Children’s Hospital

It’s quite simple. We owe Boo’s life to Boston Children’s Hospital. Those first scary days in the NICU? It was the nurses who saved my sanity. I will never forget the panic on the doctors face when he gave Boo oxygen and said she needs to be transferred. NOW.

We went to Children’s not because we were scared. When Boo was born I told the nurses and the doctors that she was breathing funny. They sent us home, me the over-reactive new mother. A complete 180 from when I had Abby and they wrote in her chart, failure to bond.

We took Boo home. Went to the Pub because she was “fine” and it was David’s birthday. This is back when they gave you a free meal on your birthday. The next day the VNA nurse came to our house to do a well-being check on Boo and asked, why is she breathing so funny. She was breathing at 110 breaths per minute. The average newborn breaths at 30 breaths per minute. Two hours later we were at Children’s Hospital. Sure that this was a fool’s errand and again we would be told that we were overreacting we brought Abby.

And spent the next five hours with Boo hooked up to monitors and her sister seeing first hand that Boo wasn’t safe. David and Abby went home at 11pm when we finally got a room. It was 2am when after an ECHO and found out she had FIVE holes in her heart. Then came that scary moment when Boo lost consciousness and I received my first introduction to the NICU. They asked me to leave so they could do some tests. I will never forget coming back, seeing nurse straddling my 5 day old newborn and screaming at another nurse that I couldn’t be there right now. Not because I was interfering but because she didn’t want that image in my head.

But it is. To this day I see that nurse, Allison, straddling Boo trying to get blood out of dehydrated veins. I see Mary, who when Boo passed out in my arms and I was alone screaming HELP HER and she did. Then she taught me not only where the oxygen was but where the HOLY CRAP button was. I will never forget going home one night to try to sleep but not. Dropping Abby off at Kindergarten and the head of the school offering to drive me back to Children’s because I looked like death warmed over. That morning I went back and Boo wasn’t where I left her. I thought my child had died.

For one moment imagine walking into a hospital and not finding your child where you left her. Imagine how it feels that you left your child for eight hours and she wasn’t there.

But no, she was safe. Just transferred from the scary NICU to the not so scary part of the NICU. The ward that looked like a cattle barn. 3 patients to every nurse. She was getting stable. We were sent home seven days later. 


I was terrified. I didn’t want to leave. Boo spent the next two years sleeping on my chest. She ended up with 10 doctors working to keep her stable. Over the next five years she would have surgery on her spine, she would aspirate and be hospitalized over 12 times.

Boo survived.  Despite our fears. Because of Boston Children’s Hospital.

The first year of her life we formed Bridget’s Brigade. Our family and friends have walked every year since. Bridget’s Brigade has raised over $20,000 in support of the only hospital we trust. We walk to fund the research that may someday, far in the future, tell us why Boo must suffer. We walk for the other parents who walk into the NICU and think our child will not come home.

Throughout the years we have acquired many specialists. We have held Boo down for sleep studies, lab work, EEGs, surgery and MRIs. We have also watched our child triumph. To do things no one thought she would be able to do. Love her sister, walk and run and jump. She has words. Boo has friends. Boo has more support than I would have ever realized that moment when I thought she was gone from my life.

The morning when my heart broke and was rebuilt in an instant.

We walk for Boo and the thousand other children who bear unspeakable pain. And the parents who bear witness.

We ask you to share our story and support our cause. Last year Boo and Abby kicked off the Walk. We walked with 20 of her friends and this year will walk again. We ask you to please donate to her team:

Every donation, as little as $10 goes towards helping children like Boo. It helps children who are suffering unspeakable pain. It helps parents who have the utmost faith in a hospital to save their child’s life.

I only have one thing to be thankful for this week: My Boo and the hospital who never stops believing in her.

Ten Things of Thankful

Thanks but I’d rather have a glass of wine….

It was difficult to find the thanks this week. But I’m going to try because Lizzi is hounding encouraging me. But this week was full of floods.

The first flood was quite literal.

1. I am thankful that if a frozen pipe is going to burst in the walk-in closet on the second floor that my husband was there to go all handy and run around the basement for the shut-off valve.

2. I am thankful that the plumber who came over on a Saturday morning did not make us take out a 2nd mortgage to pay his bill.

3. I am thankful that Abby was there to feed Boo breakfast, snack and lunch while her dad and I contended with the flood.

4. I am trying to be thankful that although Abby wouldn’t change Boo into clothes or hey a clean pull-up. I am thankful nothing escaped the close to exploding diaper.

5. I am thankful that although I hadn’t showered before the flood there was still hot water left to take one after it was under control.

The second flood hurt more as this time I had a flood of emotions. 

6. I am thankful for restraint when I didn’t smack the psychologist who said that saying Boo was autistic wouldn’t change how I would feel about my child. Although I did scream really loudly in my head NO SHIT HARVARD. 

7. I am thankful for Boo’s PT not only babysat Boo & Abby so I could decompress but then stayed up until 1 am with me as we talked about Boo being labeled autistic meant to me, to Boo and more importantly to those responsible for her care.

8.  I am thankful for Jenn who always knows what to say and for Tia who thinks she doesn’t always know what to say but is the first one there to lift me up. For Becky taking Abby on the best play date of her life so Boo could attend a birthday party.

9. I am thankful that when Boo attended a birthday party (her FOURTH!!!) and when the party host asked if Boo was “a little autistic” I could reply, yes but that is like saying someone is a little pregnant. And I said it with a smile not with gritted teeth.

10. I am thankful that while I spent another birthday at CHB this time it was with Boo’s cardiologist who told me that while Boo still had a hole in her heart it would not require surgery. Just observation. She doesn’t have to go back to Cardiology for FIVE YEARS. Can I get a WOO HOO and a FREAKING THANK YOU!!!! for the best birthday present ever?

Ten Things of Thankful

October Thanks

This week it is (again) easy to give THANKS. That is capital letter thanks, mind you. It’s been a very busy week let alone weekend.

10. My friend R answered my call, well text, this week. David was supposed to race with me this weekend. However he had some excuse called work. I have never raced alone so I asked R to go with me. And she did! We had a great day together.

9. “R” accomplished her goal of finishing a 5K in under 30 minutes! She wasn’t expecting to do it today.  Woo Hoo I was so glad to see her smile as she crossed that finish line. ‘

8. After the race I convinced “R” to go to attended the free after race celebration. We had a great hour just chatting.

7. The family was a plus 4 to another friend’s Halloween party invitation. It was a costume party and I am not quite sure who had more fun, the adults or the children.

6. We all wore costumes, even Boo. She was the child in PJ’s who should have been in bed. Also known as the one kid whose mother was smart enough not to attempt a costume that she would have to put into a car seat.


5. Boo showed everyone how to twerk.

(apologies, still haven’t figured out how to import videos from my phone. To see Boo twerking visit her Facebook page!)

4. We had a great time at Allie’s school Halloween celebration. 

3. My mother-in-law watched the girls so R and I could do the 5k. 

2. Crafty Auntie K did the pumpkin carving with Allie and Boo so I didn’t have to ruin another Halloween.

1. The true heroes of the world showed us the true meaning of bravery and what it means to ROAR. Thanks to the children, parents and staff of Dartmouth-Hitchcock Hospital Medical Center in Lebanon, NH for making my week.


Now it’s your turn. Tell me what you are thankful for this week.  After looking at those kids out rock Katy Perry I am sure you can think of just one thing this week to be thankful!

Ten Things of Thankful

I’m thankful Kate didn’t run away

Ten Things of Thankful



For about six months now I have been stalking Kate from Another Clean Slate. If you don’t read her regularly, you should. It is so cool to see how I should have lived out my late 20’s early 30’s. You know, if I could have handled living in a city. And been a young, beautiful urban professional.

As many of you know, I’ve been signing up for 5k’s. So this week I am thankful that:
1. Kate answered my e-mail eons ago and rose to the challenge of doing a 5K with me.

2. That Kate finished her first 5k of this year. The bad part is she doesn’t think she did well. The awesome part is I know better. The race wasn’t that busy and she not only finished but finished looking as good as she had when she started.
Me, not so much.

3. That meeting a blog-friend in person is super scary, but turned out to be so comfortable. We seemed to pick up the conversation just as if we were e-mailing one another or reading her blog.

4. That David didn’t freak when I told him we were meeting another couple for the first time that I had never met in person. (He is kinda paranoid about the land of Blog)

5. That when Kate saw David & I for the first time dressed for the Mullet High-5 she didn’t tell Joe to lock the car doors and immediately drive away.


6. That David & I finished this race with our best time ever. 27 minutes. It really helped that the course was just about flat, the sun was hidden and the rain had stopped. Oh I am really thankful that the rain stopped an hour before race time.

7. David let me cross the finish line first this time. Even though he totally held back to run with me.

8. That my friend A landed 2nd place in our age-bracket. I was super proud of her. I finished 82 out of 180 runners. Definitely Kate and I were not last which is always my second goal next to just finishing.

9. The race ended with free beer (which I don’t drink David got two!). When I had my first sip of wine and Kate her first sip of beer she noticed it was only 10am. Neither of us judged so I feel thankful for that.

 


And last but not least, I am glad to say that sometimes things just work out. At our race this weekend Kate and Joe had to endure meeting a bunch of people they don’t know and everyone was just so happy to see one another. David & Joe got along great and they were not ‘strangers’ at all. I am not so sure I would’ve been that brave.

So, thanks to Kate for making my week!

For anyone who wonders why I was dressed so stylish…this is what the true Mullet Marathoners look like:

Oh and Kate, the next time we get together I a) promise not to make you run and b) will be dressed more appropriately!
 
One last thing, congrats to all my friends who participated in Buddy Walks around the Country today!



There are heroes and then….

There are heroes and then there are SUPER HEROES. Those individuals who leapt buildings in a leaping bound, the wonder women with magical bracelets and an invisible plane.

Man, I’d like an invisible plane. That would be super cool.

When I was younger I wanted to be a member of the A-Team. I thought the Colonel Smith was the best, loving it when a plan comes together. Who wouldn’t have a crush of Faceman? I wanted to big brother like BA Baracus (I thought at least one of his necklaces would look good on me). And Madman Murdock? He was just like this Uncle I had…Anyway I thought, as a tween, I would be cool and safe as a member of the A-Team.



Then I grew up.

And I realized the superheroes are not that common. That a plan doesn’t always come together. That you need to sometimes be a BA to get things accomplished. I also realized something else. Superheroes come in all ages.

The woman who hugged another in an elevator.

The father who pushes his son every year in the Boston Marathon.

The soldiers near and afar who put their lives at risk every day so I can sit in my home and drink my wine.

The makers of my wine.

The grandmother who looked at a child having a temper tantrum and told the parents it does get better.

The doctors who saved my daughter’s life.

The therapists who enrich Boo’s life making her the best she can be.

The school teachers who have more patience than Saint Teresa.

The friends and family who answer my HELP ME calls.

The people who run into the emergency rather than running away.

But I do have one SUPER HERO….

Allie.



Who looks at her sister with love and empathy. Who has adored her sister from the moment they met.



The sister who braved multiple hospitalizations to see her baby sister. The girl that explains to other children that Boo has a “funny” pattern in her brain that makes her “special”. The girl who has attended so many therapy appointments that she can run her own.  Last week, after coming home from a sleep over, Allie took the time to go through Boo’s speech therapy:

Boo: I EKRJWORYOWEHFOFJSFROREEEEEEEEEE
Allie: I
Boo: I
Allie: Want
Boo: Want
Allie: To
Boo: To
Allie: Have
Boo: Have
Allie: Cookies
Boo: COOKIES!!!!!

This is a super hero at just nine years old. Allie possess the ability to calm her sister, to hold on while Boo deal with a hazmat situation, who calms a head-banging moment, helps her swing and jump. Allie is the protector and the “mad” girl who cracks Boo up with her antics.  Kind of like the A-TEAM all mixed into one little package.

It helps that she is cute beyond belief.



I hope to she maintains her membership in the hero society. I cannot wait to see how she changes the world.

Who’s your hero?




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I’m thankful…

This week I am thankful for so much and am happy that The Considerer, Kristi and Joy have created this weekly remembrance.  A time to look back on the week that was and say, you know it didn’t really suck.

10. School is officially out. Now, I know I will be singing a different tune next week. But to have no homework battles? Allie is doing the happy dance.

9. A night out with colleagues. I never go to business dinners. I usually make excuses don’t have the time. But this week I went out to a nice restaurant with peers whom you would think outside of work we had nothing in common. Holy crap did we laugh. It was truly a beautiful night out, even if the Bruins lost.

8. I fit into my skinny shorts without having to suck in my gut, that much.

7. Remember that tent/tunnel system? Well guess who moved in…

Yup, Bailey discovered the tent


So I am thankful some one in the house is using it.

6. That while Allie did not get the BEST TEACHER EVER for fourth grade the one she ended up with she is not nervous about.

5. That Boo’s summer program starts in just nine days. Please understand, her teachers and aides so deserve a break. I do not know how they do their job day in and day out with a smile on their face. But I am beyond thankful that they will be back soon. Even better her aide Sydney should be returning.

4. At a recent party there was a bounce house. Boo not only went into it willingly she loved it. The older kids ran all around and she laughed, jumped and was involved. This is huge from just a couple of months ago when the bounce house terrified her.

3. Kristi for letting me know how pet rocks came to be. It had been really bothering me for a long time. In all seriousness, Kristi’s posts make my day. The fact that she took time out of her busy life to help me with a photo issue has not been forgotten.

2. I have two nieces due to be born within the next week. Kind of funny that they are being born so close together when they live a million miles apart. After a long time waiting to have children, my brother and step-brother’s wives are due on the same day. I just hope they don’t choose the same names.

1. That there are only 66 days left of hearing I’m bored summer vacation.

Happy Weekend everyone! I hope you take a moment to enjoy a glass of wine, a ray of sunshine and a quick thank you for making my days easier!


Ten Things of Thankful