Friday, March 29, 2013

FMF: Broken

No FMF does not mean F*/*-/ my Family :)

Five Minute Friday

It is time for 5 minute Friday. Here are the rules: Write for 5-minutes, without editing, back-tracking, over-thinking. Always hard for me to do! And in complete honesty I had to re-start this one. More than once. Because this week's prompt brings so many thoughts.

 
Broken
 
 
Starting now....again (!)
 
When I think of broken I think of how we have not been broken by Boo but how how she has strengthened us. I remember when we first brought her home I wondered if our family could survive a child with (at the time) overwhelming health issues. What I learned was that I do not have to be strong all the time, my husband and I can take turns breaking.
 
 
I have been surprised how Boo has made our extended family bonds stronger. We have been completely overwhelmed by the support of our family, friends and community. By being "out there" with Boo and her spirit we have been truly blessed.
 
When her health stablized and we learned that she may be intellectually disabled it was like we were given good news and then but here is the price you have to pay....your daughter will be healthy (THANK YOU GOD) but she will struggle for the rest of her life. What comes easy for other children will be work for her. But she will GROW!

But I worried. So worried, that the world-at-large would look at Boo and think she was broken. You know, the stares at Church or the grocery store. You know in your head that their looks and judgement shouldn't matter. But your heart kind of breaks.
 
I read about how having a child with special needs isolates and breaks a family. Boo has done the opposite. We have never hidden Boo's struggles and because of that our friends and families have been accepting of Boo. They love her and protect her as much as her parents do.

Boo has a team of therapists, teachers, aides, friends and family that will make sure she is never perceived as Broken. Instead they see Boo.
 
End.
 
Be sure to visit the host, Lisa-Jo to see how others answered the prompt!
 
  
 

Thursday, March 28, 2013

If I could hang out with any celebrity it would be....

This week's Finish that Sentence Friday is so much easier than last week's (thank goodness!). Off we go....

If I could hang out with any celebrity it would be...not just one. I know I am a greedy girl. Here is my reasoning.

If I could hang out with any celebrity for cooking lessons it would be Curtis Stone. You know that guy from Biggest Loser and Top Chef. Oh you don't?

photo credit: google images

Hmmmmm...where was I? Oh yes, not only do I think (based on all his TV appearances) that he is a good cook, I think my kitchen would look much spiffier with him in it.

If I could hang out with any celebrity for a glass of wine it would be Sandra Bullock. I think she would just be like having a glass of wine with a gorgeous girl next door that ignored us in high school but realizes 30 years later that we are super cool. We could watch Curtis while he cooked and we sipped.

If I could hang out with any celebrity for my girls it would be Selena Gomez because then I could make Allie's wish come true. Plus if she really is a Wizard then maybe she can use her magical powers to clean my house.


If I could hang out with any celebrity for comic relief it would be Jeff Dunham. Yes, he plays with dolls. But come on that guy is freaking hysterical. Imagine having this at the dinner table with Curtis?


photo credit google images
what would we do without google?


If I could hang out with any celebrity for romance it would be Mark Walhberg. I know you were thinking George Clooney based on my New Years resolutions. And yes, he has a dream home on Lake Cuomo. But  his girlfriend is some ex-WWF wrestler and three times my height and muscle mass. I would rather eat weird food with Phil than take her on in the ring. But that aside, I have more of a chance running into Mark in Boston than I do meeting George on Lake Cuomo. This is only, of course, in the event that both my husband and his wife were ill-disposed. Not that I am planning anything....

If I could hang out with any celebrity for my husband it would probably be the Duck Dynasty guys because then they could take him hunting. I wouldn't have to go, right? Maybe Mark would be available that weekend :)

If I could hang out with any celebrity for travel it would be that guy from the Amazing Race who I cannot think of his name right now. I could google it, but you know who I mean. Phil something. It doesn't matter, really. But imagine all the cool places he could take us to and the adventures we would have. Other than sky diving or bungee jumping or eating weird food. Never mind,I would like to change my pick to Oprah for traveling partner. First class all the way, Atlantis and I am sure her friend Gayle would make awesome accommodations for us.

 
And that is how I finished the sentence this Friday. I probably should have been more high-brow and chosen a Saint or some who uses their celebrity for good. But, well....that is just not me!

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I'm exhausted, so I am doing a quick mind/blog dump!

I am so freaking proud of my nephew. He is part of the reason I am exhausted. Yesterday we woke up at 3 freaking AM to attend his swearing in as a Seamen before he left for Basic Training. I already miss him. He doesn't live close by but thanks to the Bruins we text every time a game is on.

Speaking of the Bruins...you would think I would go to bed early? Right, I mean up at 3am...but no I stayed up to watch the battle with the Canadians. That we lost. I think the big, bad B's had better shape up soon. Thankfully my nephew got spared the game. Although my other one was tortured with me.

Boo is sick. Again. With the creeping crud. Kristi I swear if her and Tucker keep kissing...kidding! Of course, mom of the year that I am, I sent her to school. No fever and she wasn't cranky. So I figure go and get well.

My friend, who lost a child to SIDS a year ago is doing a fundraiser in her son's name Colby's Crusade. I do not know how she survived the experience. I think of all I go through with Boo and am feeling so blessed. That Kandi would not hide under the covers, but share her story and help prevent another parent having to suffer. I am in awe. SIDS is the leading cause of death in babies. More than cancer, Cystic Fibrosis or heart disease. Before Kandi told me, I had no idea that an estimated 8, that is EIGHT, babies die every day from SIDS. And there is no science that can tell us why.

And I get ticked that Boo is undiagnosed.

On a lighter note, the hubs and I actually watched a movie together and it was Disney (yeah us!). Rock of Ages, you would think with all the talent, Alec Baldwin at least, it would be a good movie. It was one of those you were positive would improve. But not so much.

Of course now I have an 80's soundtrack playing over and over in my head.

Okay now going for caffeine. End of brain dump, thanks for reading my exhausted thoughts!


Tuesday, March 26, 2013

Are you in or out?

Are you out of the closet? The blogging closet, not the other one where I hid the fudge brownies!

I am 'out' to about all of 6 people that I know in my real life, as opposed to this still-toddler stage virtual one. This number does not include my husband, who has been told TWICE, but sometimes manages to forget. Only two of the four read on a regular basis. The others, I am not sure if I ever drew the map on how to get here. If they do visit here often they never let me know.

I remain on the threshold of that closet door wondering if it is a good decision to come out or safer to remain inside. On one hand, I get to use this forum like a therapist couch and on the other I am sharing more with strangers than my own circle.

In typical Kerri fashion I devised a pro/con list:
  • I don't offend anyone that I will meet in the grocery store. Like the time I complained about the friend who drank all my wine.
  • I can be heartbreakingly honest without fear that a friend will be calling to ask me if I am okay. Because you just know I will respond, if you read the blog than you know I am not!
  • I don't have to worry when I complain about how some random comment hurt my feelings and making that person feel bad.
  • I can say anything on this blog without a care that what I say may be misconstrued, gossiped about or whatever. If I don't like something you comment on this blog I can delete it (like that SPAMMER who tried to sell you something in my comments section) and move on.
  • I am potentially limiting people who can help Boo.
  • I am definitely limiting their understanding of her.
  • I am shrinking my village/circle/support system by not being honest
  • Staying in the closet where there are brownies, I am definitely not offending any family members when I vent via blog. Just imagine the Yankee Swap at Christmas if I tick off a sister-in-law.
  • I am not getting phone calls that asks was it X who said that about Boo?
  • I'm not getting calls from Mom either in embarrassment (what did you & Tia do in SPAIN!) or in worry (why didn't you tell me you broke!)
  • I am not letting Boo's friends and family know all about her hard work and triumphs.
  • No one is telling my husband all of the crazy things I write. (total bonus)
  • By staying in the closet I may not be helping friends who are too scared or tired to ask for help
  • I am not boring any friends who get tired of Facebook posts about the "R" word, World Down Syndrome Day and fundraisers for my favorite cause Children's Hospital. Although the fundraiser included beer so they probably didn't mind that one as much.
  • I might get more Top Mommy votes and move up from oblivion (warning shameless plug below)
Just Click To Send A Vote For Us @ Top Mommy Blogs
GO VOTE :)

After reviewing the list, I am still on the edge of the closet. Because I started this blog as a means of therapy. A place I can say anything and not worry about anyone else but me. Then as it evolved into a daily occurrence (something I never imagined) with followers, I thought it was too late now to tell people. 

Do I send a birth of a blog announcement? Or a hey, I've been keeping a secret announcement like I did for Jenn and Tia.

Plus, I think there are brownies and wine around in this closet, for sure somewhere. Probably under the shoes....

Monday, March 25, 2013

How to know if you are a mom

Quick disclaimer...this is not a dad bashing. But sometimes we all question (at least I do) if we are moms or something less. And taking a riff from Jeff Foxworthy I have come up with my own list to decide if you are a mom or not quite yet.

If you can tell instantly upon walking into the house the difference between your child's hazmat, your dog may have pooped on the floor or your husband just broke wind...you might be a mom.

If your child wakes up at 3am and can find you snug in your bed, after traveling up a flight of stairs in the dark and totally bypassing the other side of the bed, the one closer to the door....you might be a mom.

If you get called at work to find out if that shirt that is folded in the laundry basket is clean or dirty and/or if that thing is the fridge is still good to eat...you might be a mom.

If you can tell by your child's cry over the baby monitor if they will be going back to sleep quickly or if you need to run into their room to prevent a full-scale meltdown...you might be a mom.

If you can simultaneously cook dinner, do the dishes and stop a sibling squabble without burning anything...you might be a mom.

If you would rather lay on the couch and snuggle your child (at any age) instead of going out on a Friday night...you might be a mom.

If you eat the last fudge brownie in the laundry room while you let your child watch another hour of TV....you might be a mom. Heck, if you ate the whole tray of brownies in the laundry room you are definitely a mom!

If you have held a child on your lap while you have ate, drank or peed....you might be a mom.

If a child has crawled into bed at 3AM and it took the man person on otherside of the bed 4 hours to realize that there is a third person there...you might be a mom.

If you understand that meltdown-thirty  immediately  proceeds wine-thirty...you might be a mom.

If a child has broken and mended your heart at the exact same moment...you might be a mom.

If you have woken up on a Monday morning and thought to yourself thank God they go to school today...you might be a mom.

If you know the schedule of the PBS programming without looking at the guide....you might be a mom.

If you have ever turned a child upside down in public and sniffed to see if a diaper might need changing...you might be a mom.

And last but not least....


If you read this post and not only laughed but nodded your head...you might be a mom.

So, how do you tell if you are a mom?




Friday, March 22, 2013

Five minute Friday: Remember

Today's Five-minute spark is: Remember

Remember when we first met? We were twelve and there was a crazy teacher in the room who wore rocks on her head. Thru fate we sat at that science table together. I was shy, you were pretty. You asked me over that day afterschool.

It was the first time a friend had invited me over, just me, that I can recall.

We were fast friends, ultimate confidants. We spent weeks at each other's houses. I always wanted to spend more time at yours. You freaked me out with horror movies. I had to move my bed away from the windows after one Jason movie.

We traveled to Spain together, with a contract your mom made us sign that said we wouldn't let others come between us, we would not fight and we would not leave the other alone in a strange country.

You taught me how to use a tampon, in Spain of all places. And when it fell out because I did it wrong you were the only one not to laugh but call encouragement and more explicit directions through the door.

When my family fell apart, you stood by. When you had the life I envied, you always made sure to I was a part of your adventures. You went to college, married and traveled to another country without me. Yet you were always there.

Then you moved back and we found that even years and miles apart, we were still as close as when we were 12.

We have survived break-ups, marriages and childbirth. When I had Allie you were there with joy. When I had Boo you were there with joy and more importantly understanding. You are my rock, my friend and my sister.

Remember when we were 12 and there was that crazy woman teaching a class with rocks on her head?  Who would have thought we would still be holding on 30 years later......






Be sure to visit the host, Lisa-Jo Baker of 5-minute Friday at



Five Minute Friday
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Thursday, March 21, 2013

If only I could make her wishes comes true

Yesterday morning I was cleaning out Allie's backpack. I know, most mom's are on the ball and clean out the backpack the night before to make sure there wasn't homework. Me? I wait until 10 minutes before the bus comes. Innocently enough there was some St. Patrick's paperwork. A piece of paper with a 4-leaf clover where Allie had to write four wishes.

1. To see Selena Gomez
2. For Boo to stop having special needs
3. To stop having bad teeth
4. I would love some nice horse books

Okay, wish #1 is probably out. I do not think Selena Gomez tours. But I will set a Ticketmaster alert!  For wish #3 I know this is due to her having a pallet expander put in her mouth last week. It has not been fun. And I can totally grant wish #4 in her Easter Basket next week.  But back to the wish that broke my heart. How do you explain to your child that their sister/brother will not be 'cured'?

Allie seems to take Boo in stride, I thought. Out of everyone Allie seems to take Boo as she is, just her little sister.  Of course I had to ask. First I asked what Allie meant by special needs. In Allie's mind, special needs meant that Boo takes longer to learn stuff, things are harder for her and she has to spend so much time in therapy.

Why can't she just be normal?

I explained to Allie that Boo cannot be 'cured' (I know, MOM--with exaggerated eye roll) but that she improves with every therapy appointment.  That only a year ago Boo barely talked and now she has about 60 words and just started using 3-word sentences. That today she can jump, ask for a cracker and climb up and down the stairs.

But I have no life because of Boo!

Allie told me that if Boo wasn't in so much therapy then maybe we could do girl scouts, gymnastics, play-dates. I didn't want to shatter her innocence that it was my fault she wasn't enrolled in any of that stuff. Team sports gives me nightmares. Have you seen Dance Moms? No way in hell am I going down that road. I will take 15 therapy appointments a week!

But this comment opened my eyes to what we are doing wrong with Allie. I thought that by having her attend Boo's appointments she would have a better understanding and be able to work with Boo in a positive way. And she has, I have seen Allie tell Boo to use her words or how to make her use skills learned in OT. She can explain to her friends why Boo doesn't understand or act like a typical 4YO. However, I did not realize that Allie is beginning to resent having to spend 2 hours a day after school at the therapy center. She wants to be home or with her friends or anywhere else. This is something, though, we can fix. We can have some one pick Allie up afterschool so she doesn't have to attend every therapy appointment.

However, she is not going to be able to do team sports. I am not that accomodating!

I wish she was normal too
 
I told Allie that sometimes I wish Boo was normal, too. Think about how much simpler life would be if only Boo was a typical 4YO. If we didn't have to worry so much, attend so many appointments (slight aside-think of how my paycheck would increase if I could actually work a full week!) and not have so many meltdowns. I completely get Allie wanting a normal baby sister that she could have typical relationship. Even if that meant hair pulling and screaming matches.
 
But wait, there are perks!
 
We started talking about some of the cool things Boo brings to us, just being who she is. By not being that typical 4YO, she isn't in Allie's room destroying her toys (or worse, playing with them). That Allie gets to do more things because Boo isn't involved in activities (other than therapy--is that an activity?). That we have gotten to meet some really cool people and be involved in things like World Down Syndrome Day and the NSTAR Walk for Children's Hospital.
 
Allie thought the biggest perk was being able to cut in line at Disney World. I kind of agreed.
 
 
I really wish that I hadn't misplaced that parenting manual with all the answers to life's questions.
 
 





 

Wednesday, March 20, 2013

Got socks?

Tomorrow is World Down Syndrome Day!

The United Nations has designated March 21, 2013 as World Down Syndrome Day, a day to recognize terrific individuals who have Down syndrome. Countries from around the world will be wearing Lots of Socks to celebrate! I want everyone I know, either in real-life or this blogging one to participate.
DS Day
On 3/21/13, to celebrate the unique Down syndrome person, please participate in Lots of Socks! I am inviting you (and everyone you know) to wear brightly colored socks, mismatched socks, long socks, short socks, printed socks, one or two or three socks. If socks are not your style consider wearing a blue or yellow t-shirt in recognition of our friends who have Down syndrome. Or better yet, do both!

This is a great way to demonstrate that although the socks are different, they are still socks. Just as a child with Down syndrome (or any special needs) is still a child.

For those who may not know, children with Down syndrome are born with an extra chromosome 21, giving them 3. The good news is that with knowledge and medical advances the life expectancy for people with Down syndrome has risen from age 25 in 1983 to age 60 today! People with Down syndrome attend school, work and participate in sports and other extracurricular activities. And while all people with Down syndrome experience cognitive delays, the effect can range from mild to moderate to severe.

So just like any child, a child with Down syndrome has unknown possibilities.

I hope you and your children will celebrate the extraordinary lives of people with Down syndrome by wearing lots of socks on 3/21.
For more information:
Massachusetts Down Syndrome Congress
http://www.mdsc.org/
National Down Syndrome Society
http://www.ndss.org/Down-Syndrome/
World Down Syndrome Day
http://www.worlddownsyndromeday.org/

Tuesday, March 19, 2013

Oh so helpful

Remember the grand plan I had to whisk my husband away for a weekend? A great friend even offered to watch both girls. How lucky was I, that Boo didn't terrify her? I guilted a family member into taking crazy puppy. Well, not really guilted. I told her that if she took crazy puppy for the weekend her husband would stop asking to get a dog.

We were all set for this weekend. Except, I told my mother. Whom I love! But then she asked if we were coming down for Easter. I explained that I didn't want to travel two weekends in a row nor could I afford two trips in less than 7 days. I could tell she was disappointed.

I get home and tell Hubs. He "was looking forward" to going down South to get out of this freaking cold weather. I told Hubs my dilemma. His response? Whatever you want to do. HONEY.

Oh, so helpful.

Going back and forth all night, I decided I was being selfish. That the girls would love to see their grandparents. That we are the only ones ever willing to travel down there to see them. They always have to travel to see family. That the holidays are tough when it is just the two of them.

And then Boo got sick at about 3am. (side note, guess who was working?) Again, I was on the fence.  I know our friend will be awesome, and am so thankful for her offer. But.....

Between the guilt and the worry it just isn't worth it. I cancelled our reservations and I will beg "J" to keep her offer open for when it is warmer. That we will try again for some time away. I was also thinking that this is something our parents never worried about. They never traveled without us. Back in the day, people just didn't travel as often period. Let alone a vacation from their kids.

Yes, I admit, it would be a vacation from the girls!

I called Hubs and let him know that I cancelled the reservations. His response: Why? I told him my reasoning. His reply: Well if that's what you want to do.

Did I mention how helpful he is?


Monday, March 18, 2013

Favorite holiday.

St. Patrick's Day is my favorite holiday. First, I don't have to go into debt buying a bunch of presents that no one really wants. Second, hello music and wine. Enough said! I joke that Hubs will work Valentines Day every year, but will make sure he takes March 17th off for me.

He does know the way to my heart. He even got a sitter for yesterday! Well, his mom. But woo hoo.

We decided to early for a late-lunch/early-dinner and then get the girls by 5-ish. Yeah right. See, there was this fire.....we had barely got into the Pub when his radio went off. You could tell he wanted to leave. He was like a little kid doing the night before Christmas dance. Luckily we were with friends so off he went.

A couple of glasses of wine, Irish jigs with strangers teaching the young ones how to clap to "No, Nay, Never" he returns. He felt it was the best holiday ever: beer, Sheppard's pie, and a brush fire. And this happened:


Instead of leaving at a respectable 4pm, it was more like 7-ish. (hey at least it was 7-ish pm and not am!). We went to pick up the girls all was well. They had a fantastic time with their Grammie.

Best holiday of the year. No cooking, no shopping, no credit card debt and a picture I can embarrass my husband with!

Friday, March 15, 2013

Five minute friday...or 2 posts in 1 day I am adventurous like that

Lisa-Jo Baker started a 5-minute blog writing funcapade I don't know when. I always thought I would join, but never have. Until I saw today's thought and laughed out loud. So here I go :)


Today's prompt: REST

Why is rest so funny to me? Because I don't remember what it felt like. Seriously, this week alone:

Monday--Boo was up all night with her stomach issues

Tuesday--Husband was in and out all night on Fire calls, making the puppy go nuts each time he came home
Wednesday--that puppy? Well he managed to eat FIVE of Allie's toys including: a clothespin (why she had one I still don't know. Seriously didn't even know we had one in the house), a Barbie, a block, a brush (bristles and all) and a maraca. Yes, a maraca. He then proceeded to throw up every 2 hours until 6am. And guess where Hubs was? You guessed it: FIRE STATION!
Thursday--Allie got a pallet expander. I thought all was well. Sure she was a little swollen but who wouldn't be? Until 3AM when she woke up in pain. Rather than really deal with the pain, I let her crawl into bed with us. Guess who was home? Right, husband. So why do mom's always end up in the middle of the bed, getting kicked, drooled on, punched and I don't know what?


And this was just this week. Put that over the past 4 years with Boo (sadly, cannot blame Allie she is usually my champion sleeper) and I think the last time I 'rested' was before I had grey hair.

Now check out the rules and go visit the host for 5 minute friday below!



Five Minute Friday
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I did something really stupid once....

It's Friday and I am joining in on Finish that Sentence. And this week's starter is "I did something really stupid once..."

Well, how to attack that one? I mean, I would love to say I did something really stupid ONCE. But let's face it, my track records is really not the best. To say I did something stupid once would be an understatement.

After thinking about it, and not for very long, I realized I usually do something stupid when a party is involved.

There was the time when I arrived a half-hour early to my surprise baby shower thinking I would help the host set up for her housewarming party. I arrived before most of the surprisers! Last year, I took Allie to a birthday party, knocked on the front door and the mom answered in her pajamas to tell us that the party was the next day.   More recently, last weekend I took Allie to a birthday party. We arrived at the location and we were not just 15 minutes early, but a week! Thankfully it was not at the person's house but at a gym. I thought I was in the clear until the next day at CCD she told her friend, guess what my mom did AGAIN.....


Now make sure you join in. I cannot be the only one who did something stupid once, I mean twice or thrice!!! And as a note of caution, may I suggest double checking the invitation to a party before you leave the house?




Finish the Sentence Friday
 
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Wednesday, March 13, 2013

Making it all come together

Yesterday at speech therapy Boo was in a mood. Not a bad mood, but a mood. She didn't really want to participate in speech. She wanted to move around. Thankfully our speech therapist  "C" is awesome and quickly tuned in the best way to make the 45 minutes productive.

They moved to the floor, where Boo could lay/flop/jump/sit on C's lap. Was Boo really focused on speech? Nope. But C was patient and demanded that Boo not only interact but follow thru in using her words to request.

Of course it got me thinking.

Her other therapists don't do that. We went from speech to occupational. Where the therapist worked wtih Boo but didnt' make her use her words. Then onto physical where again, the therapist worked with Boo but didn't make her use her skills from OT or SPT. And in reviewing the afternoon, "C" didn't make Boo use her OT skills (unless trying to eat the playdough counts as OT skill).

I'm not short-changing any of the therapists. I adore them all and am always so thankful for the love and attention they show Boo. But....

Wouldn't it be more effective if the insurance company would allow them to co-treat? Instead of spending 3 hours in therapy (after spending 8 hours in school) working on different skills, wouldn't it make more sense to have the therapist work together?

We did get authorization for one co-treat a couple of months ago. While it was for PT/SPT and OT was neglected, it was awesome because we got to see how many missed opportunities we had to encourage Boo's language development.

I think it would also help us at home. By the time we finish 3 hours of therapy, we forget to integrate everything in the home.

If only I ran the Insurance world!



Tuesday, March 12, 2013

3/21 (yes, I know I am early!)

My child does not have Down syndrome. However, a lot of the strategies and treatments that have proven success on children with DS work for Boo. So I am so thankful for the children and people with Down Syndrome who happen to be in our lives.

We have learned so much from their struggles and successes.

March has been named Down Syndrome Awareness Month. World Down Syndrome Day was established in 2006 by Down Syndrome International, with the goal of raising awareness and mobilizing support and recognition of the dignity, rights and well-being of people with Down syndrome across the world. March 21, the 21st day of the third month of the year, was chosen to symbolize the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome. In 2012 the United Nations began celebrating this wonderful day.

"It is important to celebrate World Down Syndrome Day on March 21 because there should be a day to celebrate the needs of people with Down syndrome. We are able to do things that other people can and can’t do – just like anybody from around the world," says National Down Syndrome Society (NDSS) Goodwill Ambassador Chris Burke. "No matter who we are or where we live, give us a chance to do something with our lives so we can look forward to the future."
Photo credit: Google images


And by the way, how super cool is it that Chris Burke lived his dream to become an actor? Talk about breaking a glass ceiling!  Okay, back on point...(yes, I did have one)

So anyway, Boo does not have Down syndrome. But she does have special needs and I think that a lot of her needs are helped by the tools created for Down syndrome. So in the self-interest of solidarity I am shouting from the bottom of my heart about World Down Syndrome Day.

And I am asking everyone I know (either in real-life or virtual) to show their support of all the awesome people with Down Syndrome. How can you? Well, I have found a couple of cool ideas. So on 3/21 choose one or more and join the party!


Photo credit: Lot's of Socks


The first is to participate in Lots of Socks. This year the International World Down Syndrome Society is encouraging people to wear two or three or more different socks. Why should you participate? It is a great visual to people that even though the socks you are wearing may be different they are still socks. Just as children with Down syndrome (or plug for Boo "Special") they are still children.
 
Wear a light blue or yellow shirt. These are the colors of the National Down Syndrome Society. They also have wicked cool shirts go here to order: 3:21 Signature Clothing

Photo credit: Google images
 
Tell your friends and family about the day. Tell them how your child may/may not have Down syndrome. But that we support all of the differently-abled children in the world. And wearing socks is just too fun not to participate.
 
Acknowledge how awesome a person in your life who has Down syndrome. Give them a shout out on Facebook, e-mail, send a card proclaiming their awesomeness. Better yet, educate some one on the facts of Down syndrome not the myths.
 
Here is another thing you can do....give to a charity that provides services to those families who have Down syndrome. Heck, offer to babysit! There are many organizations out there. This is the one that I know about: 
Heartbeats for Down Syndrome. This organization was founded by four mom's whose children happen to have Down syndrome. Together they collect care packages and deliver them to Children's Hospital Boston. Their loving packages for the patient and families with Down Syndrome give a moment of comfort when they are facing cardiac surgery or long-term hospital stays. To find out how you can help please visit their  website or Facebook page!
Sign-up or support some one who is participating in this year's Best Buddies event(s). Best Buddies is not limited to Down syndrome, but encompasses all of our children with developmental disabilities.

There are many other organizations that provide support and encouragement. But acknowledging World Down Syndrome Day doesn't mean you have to give to charity. You can just wear Lots of Socks, a blue or yellow t-shirt or all 3!
 
 
So spread the word, we have 9 more days to let everyone know about this cool event. And bonus, you won't have to worry about that missing sock the dryer ate.


photo credit: ndss.org
 


 
 

Monday, March 11, 2013

Fear....

You know fear as a parent. When you are pregnant you fear that your pregnancy will be difficult, you fear labor, you fear an imperfect child, you fear that you will never again be able to see your feet.

Then your child is born and you begin to fear a whole different set of things. You fear they will never sleep thru the night. Then they do and you fear something happened so you go in to check on them, waking them up in the process and start the whole process over again.

And then the first day of school. You begin to fear a whole bunch more!!!!

But when your child is special needs, you end up fearing all of the above with an extra dose of holy crap.

One of my fears with Boo, is actually about sisters. Allie has always loved Boo. From the beginning, she was attentive and patient. We are extremely lucky. Allie has never shown the sibling rivalry, jealousy or acted out like we have been warned.  Allie has always been a loving, if photo hogging, protective big sister. She is Boo's biggest champion, her favorite person and not to give her too much to gloat over, the most patient with Boo.


First love


I wonder how long it can possibly last. I was recently reading a book called, Easy to Love but Hard to Raise. In the book there is a chapter called A Tale of Two Brothers. Laura Shumaker tells of her two sons, one with autism and one a typical boy. When they were little, the younger brother always defended his older brother.

But as they grew up, the younger brother became embarrassed. He no longer invited friends over. Laura didn't notice until the older brother went away to a live-in school. That was when the younger brother thrived. Her house became kid central, there were more activities, etc.... Laura never realized how her younger son had to change the boy he was meant to be because of how his brother shaped their world.

I never want that to happen. I fear the day Allie becomes embarrassed by her sister (more than the run-of-the-mill sibling crap). Allie is Boo's champion and caretaker. I overheard Allie recently say that when she is older her house will be big enough for Boo to come live with her.

Selfishly, I want it to remain that way.

This weekend I was honored to attend my two nephew's Eagle ceremony. The brothers, while they aggravate one another to know end, have this wonderful bond. They do everything together. Born just 17 months apart, they act like twins. Where one is you will find the other. They have that "normal" sibling relationshipk, one that Allie and Boo might never have.

I remember when I had Allie. I was a one-and-done mother. I saw my nephews (who are much older) and thought no way in hell can I handle two.  I didn't think I had it in me to love (or have the patience for) another child. Now, I cannot imagine my life without Boo. She has completed our family in ways I never imaged. 

But....she does impact in ways we never thought she would either. 

We try not to let Boo's many appointments, therapies and Boo-ness affect Allie. She has her riding, her friends and I joined the darn PTA to become more involved with what is going on in Allie's life. But Allie is not always invited to birthday parties,she is not invited for play dates and hardly ever has friends over. I am not sure if it is due to Allie being Allie, just 3rd grade politics, our own business (I don't ever think to offer to have more kids running around!) or if her friend's parents feel Allie cannot go because of Boo. That we are too busy or stressed or whatever.

Boo is Boo. And she is to be valued to for the love and joy she has brought into our lives. I worry how to keep her Allie's joy and not her burden.

I wish, pray and hope that Allie will always love Boo more tomorrow than she does today.






Friday, March 8, 2013

Beautiful Blogger Award

I need to thank Sylvia over at Faithful Mom of 9 for awarding me the Beautiful Blogger Award.

 beautiful-blogger-award           very-inspiring-blogger-award11

I cannot tell you how touched I am that this great lady, a mother of 9 kids (my head is spinning over that one, seriously 9???) According to the rules, I have to list seven facts about myself and then answer a bunch of questions. So here I go!

Seven things you might not know about me:

1) At 19 I wanted to be married by 21 and have 4 kids by 28. I didn't get married until well into my 30's, had Allie and rethought the number of children I wanted.
2) I love to travel and married a man who thinks camping is traveling.
3) I miss living in the city where you can have something other than pizza delivered.
4) I met my husband playing volleyball. I am 5'2 and he is 5'4. What the heck were we doing playing volleyball?
5) I was completely shy until I hit 35 and no longer cared if I embarrassed myself. Or my husband and children.
6) I work in clinical research. This gives me enough knowledge to be dangerous when it comes to Boo's care.
7) I am not a nurse because I do not like naked people or bodily fluids.

As if that wasn't enough information about me, I also have to answer Sylvia's questions.

1) What is your earliest memory? Is my brother trying to feed a deer at Santa's Village. He had those mittens on that were strung together so he couldn't lose one. Do you remember those? Anyway, the deer ate the food, and then tried to take off the mitten. That was still attached through his coat to the other mitten. Did I mention there was a fence?

2) What is your favorite out door activity? Sitting on the beach with my toes in the water and my ass in the sand. (love Zac Brown). Is sitting considered an activity?

3) What is your favorite cause? Probably St. Jude's because I love that they are dedicated to research AND that there is never a family bill.

4) What is your favorite charity? NSTAR's Walk for Children's Hospital because it allows us to pay tribute to the wonderful staff who saved Boo's life and make her the Boo she is and will be. We have walked the past four years and have raised almost $10,000 since 2009.

5) What job is your dream job? Not having one. But if I had to have one, it would be to be an advocate for Special children.

6) What is your favorite song? Right now it would be Ho Hey by the Lumineers. All time favorite would be Devil Went Down to Georgia or anything by Jimmy Buffett (yes, I know he doesn't sing Devil).

7) What is your favorite movie? the Princess Bride. My name is Inigo Montoya, you killed my father...

8) Do you have any phobias? If so please tell us what they are! I am afraid of heights. But I love skiing and roller coasters. I close my eyes.

9) What is your favorite animal? Dogs. Even if they are crazy puppies.

10) What is your favorite flower? The Gerber Daisy. They are just so happy looking.

11) If you could live anywhere you wanted to, where would that be? Right where I am, but with a maid.

Thank you Sylvia for making me feel beautiful!

I tried to cook....

I am a good cook. I swear. But this one time I made spaghetti sauce. From scratch. I used a starter sauce from the freezer that had been left over from the last time we had pasta. I added tomatoes, fresh spices, all the fixings to make a wonderful sauce.

It simmered all day, enhancing the flavors.

My boyfriend, now husband, came home from the fire station. There was wine. There were candles. There was pasta. He took a bite. Got a funny look on his face. Tried another. Took a sip of wine. And....

Him: You know honey there is a funny aftertaste.

Me (quite insulted): What do you mean a funny aftertaste? I spent all day on this meal!

Him (bashfully--we were not dating that long): No, it's "fine".

I took a bite, yup. It had a weird taste. But there was no way in hell I was going to admit it. A couple of more bites and then....

Him (astounded): Is this a potato? Wait, is this a piece of meat?

It seems that I may have defrosted the beef stew and used it as my starter. It was some time before either of us trusted my sauce again.

And that is how I Finished This Sentence Friday...I tried to cook! Please click on a link below and join in!

Finish the Sentence Friday
 
 
Hosted by....





Wednesday, March 6, 2013

Trying to spread the word...

Today is spread the word to end the word day. It should probably be renamed to DO NOT spread the "R" word day. That kind of rolls of the tongue easier, doesn't it?

Anyway, I was always on the fence with this one. The "R" word didn't really bother me until freaking Ann Coulter decided to say the President was like my child. Which if we were kind we could say that she was trying to give him a compliment. I mean really, how nice for some one to try to emmulate Boo, the best hugger out there. But we do know better. 

And still as much as her ignorance set me off (a kind word for swearing at the television), I have really not been that staunch an advocate. And here is why.

I'm from New England. Now I know that is not an excuse for anything other than knowing how to drive in a rotary, where to find the nearest Dunkin & Donuts, that in Somerville there are more liquor stores than streets and what mall-bang are.

In New England it is not uncommon to hear the words 'wicked', 'awesome' and 'retarded' without any malicious intent. And sometimes in the same sentence: Those wicked awesome Sox played retarded last night. (And by the way the "r" is silent and becomes an "h").

But here is where I have a hard time melding where I live with who I live with. I have friends, family, co-workers use that word. I have heard Boo's therapist (one of my favorite people) use the "R" word to describe something benign. I have asked them to find another adjective. They immediately apologized and then repeated the R word again 5 minutes later.

I "hear" the word now. Before it was an adjective, now (for me) it is like dropping an "F" bomb in front of a preschooler. And just because they might use the word, for me, is not worth losing a friendship over.

I believe in the freedom of speech. I also believe in living in a world without hurt. I am also a realist and know that those two concepts cannot live in harmony.

So the next time you say the "R" word, think of this face....



And ask if you would say that the wicked awesome Sox were playing like Boo or are you just hoping they would try as hard?

So, please just find another word. The dictionary is full of them.






Tuesday, March 5, 2013

Allie-ism of the day

Allie was telling me about something that happened at school. Now I admit to half-listening because it was a very long story. But then she ended it with....
 
They should know that I have trouble making decisions. I mean really, I cannot even decide what socks to wear in the morning


I still do not know what she had to make a decision about (I think it had to do with something about a Wizard Club and what spell to use) but man, I love that girl!

Strange weekend happenings

We seem to have strange relationships with Boo's team. From her teachers, to her aides, to her therapists and physicians. They text us, just to say hello. They meet us out for walks. They meet us out for drinks. We recently had a fundraiser for Children's Hospital in Boo's name and every member of Boo's  therapy team were there. None of whom is associated with Children's.

Of course, the fact that the fundraiser included Sam Adams helped the turnout.

But this weekend took the cake. The wedding cake that is. Boo had an OT who has left the center Boo goes to in order to work in the school system. Unfortunately for us, not in Boo's school system. But we were so happy that K got a job close to her home, with better benefits and much nicer hours.

About a week ago I got a text from K asking me to go with her to shop for a wedding dress. It was a mass text (I know because I got replies from other people). So I figured she texted me by mistake. Until she re-texted me to see if I would be able to get a sitter.

So off I went with Boo's previous OT, her current SPT and pool PT therapist to look at wedding dresses.

I am so glad I am not a bride.

But I am so glad I went. After the torture of dress shopping, we stopped at a Korean Hot-Pot restuarant. It was so much fun. I also proved that I am completely inept at chopsticks. Thankfully 2 out of the 4 of us were experts. They 'fed' the pot and then myself and Boo's SPT got messy trying to eat.

It was funny to see them out of away from the therapy rooms. To learn their sense of humor matches my own (we almost got thrown out of the bridal shop), to learn more about their families (which is only fair since they know so much about us) and to NOT focus on Boo. Sure we talked about her, but as friends not as therapists. It was even better when we all realized we were NOT in the wedding, but invited guests. 

I was kind of nervous going off for the day with people I have known for 4 years but not really known. I am glad that I stepped out of my comfort zone.

The night ended at an Irish pub, as the nights should.

Monday, March 4, 2013

Tagged, now you are it!

Part of the blog-version of Tagged is that I now get to be nosy with some of you. Hmmm...who to chose? How about

Leah over at Sunshine in a Hypotonic World. Since she just finished painting a beautiful masterpiece in her daughter's room she should have time to answer some questions. I am seriously jealous of anyone with that kind of talent!

Becca over at The Bates Motel. Her daughter Samantha is a beautiful girl with Down Syndrome. But DS does not define her or their family.

Sylvia over at Faithful Mom of 9. Honestly, not only does she have NINE children she is faithful. I am not quite sure how she does it. 

And last, but not least...Rachel over at Tao of Poop. Because any blog with the word Poop in it is just funny. And she is.

Unlike, Kristi I did not ask permission before tagging!

Okay ladies, it is time to answer 50 or so questions about you and yours! (FYI, you don't have to answer all of them, but it would be fun if you did).

1. Favorite movie?
2. Would you sky dive?
3. Would you rather be a Pirate or Cowboy?
4. Who would you rather have over for dinner: George Clooney or George Carlin (yes, I know Carlin is dead!)?
5. What song do you want played at your funeral?
6. Cruise or hike?
7. Are you athletic?
8. If you pretended you were athletic, what sport would you play?
9. Are you afraid of bugs?
10. (this one is a toughie) What is the hardest part of your day?
11. (not so tough) What is your favorite part of the day?
12. What is your dream job?
13. How did you meet your spouse/lover/partner?
14. If you could change one thing in your life, what would it be? And NO you cannot answer have more money. Unless you are Donald Trump answering this question.
15. Would you prefer a dozen roses or a box of chocolates?
16. Speaking of George Carlin (see question 4) how weird was it that he was the conductor in Thomas the Train?
17. Speaking of Thomas the Train Conductors, who is the strangest person to play the conductor: Ringo Starr, George Carlin or Alec Baldwin?
18. Favorite charity or cause?
19. If you could spend a weekend with any famous person who would it be and why? Oh, and if you pick a Kardashian be prepared for me to heckle you.
20. Favorite book or author?
21. What country would you like to visit, other than your own?
22. Do you remember your first kiss?
23. Favorite decade?
24. How happy are you that you are now half-way thru this list of personal questions?
25. What was the last thing you ate?
26. If you could change places with anyone for the day, who would it be and why?
27. Of the many quirks that make your child special, what is the most endearing one?
28. What book are you currently reading?
29. What would you tell your 20-something self NOT to do?
30. Favorite take-out food?
31. How did you get started blogging?
32. Speaking of blogs, which one must you read every day? No, you don't have to pick me. BUT it would be cool if you could provide the link so we could meet your favorite bloggess. I promise no one's feelings will get hurt. Okay, I cannot promise but I don't think they will.
33. How many languages do you speak?
34. Have you ever hidden in the closet to eat the last piece of chocolate in the house?
35. What is your least favorite chore?
36. Would you want to rule the world?
37. What adventure would you tell your 20-something self they had to do before getting married and/or having children?
38. If you could be a super hero what would your name and super power be?
39. How happy are you that I could only think of 39 questions?

Okay, now you must go forward answer the questions and then torture some one else with 50-or so questions of your own!