As The World Spinns

Some Pictures

lspinney2006@yahoo.com (Laura) — Wed, 18 Nov 2009 10:28:00 +0000

From the New England Conference. I'm still working on getting the video uploaded so you can hear the amazing Kandoo Band.
Enjoy!

So Many Things...

lspinney2006@yahoo.com (Laura) — Mon, 09 Nov 2009 10:47:00 +0000

To say and share with you all. And once I'm able to regroup and collect my thoughts in a somewhat organized manner, I'll share all the details and pictures.

I will say, the New England WS Conference was AMAZING! Everything went smoothly and it left me with such an overwhelming feeling of gratitude to all my family and friends who were so gracious with their help. KERRY......I LOVE YOU!

To those who were there and took pictures, could you please send them to me!

Okay, okay, I'll share this bit of info too........the 2012 WS National Convention location was officially announced by Terry at our conference......BOSTON!!!!!

On another exciting note:
Michaela got her first 5th Grade report card on Friday......HONOR ROLL and CITIZENSHIP!!!!
All subjects, except math, at 5th Grade level...I am so proud I could burst!

Sophie

lspinney2006@yahoo.com (Laura) — Sun, 18 Oct 2009 10:25:00 +0000

It is with deep sadness that I am sharing the news that little Sophie Henkel passed away at 12:18 this morning. Our sincerest condolences go out to her
family and friends. Rest in peace little angel.

Please keep Sophie in your prayers.
She has Williams Syndrome just like Michaela and so many others. She had open heart surgery on October 14. They replaced her aortic valve and removed the bad portion of her aorta above the valve that they are replacing. She was placed on a bypass machine as the Dr's worked to fix her heart. She needs a miracle.

Update #1:
"Dr. told us yesterday he would try to keep Sophie's own valves and fix them better to do that than risk her heart rejecting a donor valve. But that if he could not do that he would patch her aorta and harvest her good valve and put in a donor valve. The longest it was supposed to take was 5 hours. She's still on bypass with no other news. She's on bypass and we are past our time limit.

Update #2:
"We have just spoke with Sophie's surgeon. They have left her breastbone open because her heart may still need a ventricle assist machine so he needs to be able to access her heart to hook up the machine up directly. The Dr is more concerned because of the heart not being able to regain a good beat. Dr's are worried about swelling and bleeding also. Thank you for praying.

Update #3:
"We have laid our eyes on our Sophie. She is still on a breathing machine. She has more wires than the griswolds house at christmas. Very critical night in her recovery. Thank you all for praying and your words of encouragement. They are keeping us standing upright."

Update #4:
"Sophie has a lot of hurdles to jump. She's not breathing on her own and her heart is not beating on it's own. She's loosing blood, some is normal but she's loosing more than they would like. She's critical but stable."

Update #5:
"Sophie's blood pressure dropped rapidly at approx. 4 am. Her heart was not able to function without putting her back on ecmo machine. This machine is functioning for her heart and lungs. Trying to allow her heart to rest. They performed CPR. She did loose oxygen to the brain. They don't know what affect that will have for now."

Update #6:
"Because Sophie's heart is not moving right now, blood has coagulated in her left ventricle and formed a clot. She's now scheduled for surgery to remove the clot. Thank You all for your prayers and words of encouragement. We are blessed by the outpouring of support."

Update #7:
"Sophie's scheduled to have her second heart surgery tomorrow am to remove the clot. Dr will have to cut her heart open to get the clot out. Another BIG hurdle she will be fragile again. They are shooting for 10 am, give or take. It's very important to remove the clot."

Update #8:
"Just spoke with Dr. Sophie's heart is not functioning or showing any signs of improvement and it should be. Her kidneys and liver have suffered from the surgery. Dr. will not remove her clot; she will not survive it. If her heart does not show signs of function we need to decide if we want to start the transplant process. However they can not do it if her liver is damaged. She needs a miracle."

Update #9:
"4 am Sophie's kidneys are not functioning. Dr is going to take away her sedation med later this am to see if sophie's body will move. She has not had any movement to any external stimulus. She should have some. Nancy's birthday is sunday. Maybe they will have cake together."

Update #10:
6:30 am. "Just turned off all pain meds and sedation so she can wake up."

Update #11:
As of 2 hours ago, October 17th
"Sophie has a pacemaker hooked up. They shut that off for a moment and they found no electrical activity in her heart. She has not moved or become awake thus far"

Memory Bank

lspinney2006@yahoo.com (Laura) — Sun, 27 Sep 2009 11:14:00 +0000

Happiness is something you decide on ahead of time... it's how I arrange my mind.
It's a decision I make every morning when I wake up.
I have a choice; I can spend the day recounting the difficulties we face, or be thankful for the things that are beautiful.
Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy things and memories I've stored away.

Life is like a bank account. You withdraw from what you've put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

Thank you for your part in filling my Memory Bank. I am still depositing. Remember the five simple rules to be happy:

1. Free your heart from hatred.

2. Free your mind from worries (try).

3. Live simply.

4. Give more.

5. Expect less.

Heart Ache

lspinney2006@yahoo.com (Laura) — Thu, 24 Sep 2009 14:05:00 +0000

Michaela walked out of school yesterday and looked so sad....she said' "I just want to go home."

That's not like her.

I opened up her communication binder to see what was up....the wind was knocked out of me. I knew this was coming, they are pre-teens, but my heart just aches and I can't shake the sadness I have for her.

As you can imagine, the common topic these days for 5th graders is "who is dating who".....I know, REALLY?! You are only 10, for goodness sakes! But, that's what it is.
Apparently, this was the topic of discussion at Michaela's lunch table yesterday. Of course, she doesn't truly get what they mean by "dating"....and quite honestly, I don't think many of the others do either, but anyway....She does understand about "liking" boys and boys "liking" girls and she has a little thing for an incredibly nice boy in her class, who happened to be sitting at the same lunch table.

So a few of the girls were listing who they were dating, and Michaela joins in and tells them she's dating 'P'....who is sitting at the table and turns several shades of red....not that I blame him. He's such a great kid, he turns to her and says, "I'm so glad we are friends, but we're too young to date." I just want to hug this boy, he couldn't have handled it any better.

But unfortunately, Michaela 'got it' and was embarrassed and sad. No, sad isn't the right word....she was heartbroken. When we talked about it later, she asked if she'd ever have a boyfriend, to which I answered maybe someday when you are older.

Then she drops the bombshell question and my heart felt like it was ripped open.....

"Why can't I be normal?"

So Far, So Good....

lspinney2006@yahoo.com (Laura) — Wed, 23 Sep 2009 10:18:00 +0000

Both kids are into their fourth week of school and so far, all is well.

I was worried with Michaela. On the third
day of school she woke up crying and saying she was done and didn't want to go. She was having SEVERE anxiety over fire drills...long story behind that. It killed me to drag her to school crying and begging to stay home. She managed to make it through the day and the next 5, after we talked and were able to put words to how she was feeling. That 8th day, there was a fire drill! She was great, the school has been amazing and the new guidance councilor has worked hard to come up with a plan to help her. They gave her a "fire drill buddy" and for whatever reason, it's worked. She was so proud of herself that day, and we just kept saying,
"see you made it through, there was a fire drill and you're still OK"
She's been fine since, thank goodness!

Overall, she's loving 5th grade and has been eager and willing to do all her homework. No arguing, for now any way.
We have a wonderful new music teacher at school and he's started a new program of a Recorder Marching Band...more than 85, 3rd, 4th & 5th graders learning to play all same song on the recorder and march. They'll be marching in our local holiday parade in November. Michaela is absolutely loving this! She's also doing chorus.

As a 5th grader, she is able to pick an instrument to learn to play. Ever since she was in 1st grade, she's wanted to play the flute...of all things. Probably one of the hardest instruments she could choose, especially for a kid with WS. But, how can I say "No"? I have to at least let her try and when she's this determined, who knows what she's capable of doing!
So, we picked up her flute last week and she's probably practiced making a sound with it for a good 4-5 hours over the weekend...like I said, determined. It also makes a BIG difference that her music teacher is excited for her and is wanting her to succeed. He even offered to give her private lessons a fews days a week.

Michaela and I also started a Yoga class for special needs kids. Today will be our second class. It was fun and she LOVED it! It will be such a good thing for her.

In the next few weeks, she'll have Bowling Club starting up again and horseback riding lessons. This kid has a full plate and she's as happy as can be!

Aaron has adjusted just fine to high school. In fact, he loves it. I figured he'd probably be fine, but when you're coming in to a school as one of 850 incoming Freshman, it might be a little overwhelming. He's going to a big private school, Pinkerton Academy, it has almost 4,000 students! He says he finally feels like he's having to actually think....that's good, I guess. He's in all high level courses and they even allowed him to take a Sophmore level engineering class....he's loving that!
He joined the Robotics competition team and has a list of all the other clubs he wants to join.

As you can imagine, these two keep me busy!

Not My Finest Moment

lspinney2006@yahoo.com (Laura) — Thu, 27 Aug 2009 23:19:00 +0000

Not my finest 'Mommy Moment' today. I took the kids down hill tubing with our close friends, these are girls Michaela has been friends with since they were all 3yrs old....they love all of her, for who she is...thank goodness, because there are days when she just decides to be completely quirky and stubborn all at the same time.
Makes me want to just...AAAAAHHHH...want to...I don't even know what! She frustrates the crap out of me and if it were socially acceptable to just leave your kids on the side of the road, today would have been the day.

She took all of 4 runs down the tubing hill and decided she was done. We still had almost 2 hrs of time left. She wanted to go have lunch and then go back to one of the girl's houses to swim....which was the plan BUT after the 2hrs of tubing.
I REFUSED to leave, there was NO WAY I was taking that from Aaron. That poor kid sacrifices more than he should already.
She started crying...made me more annoyed...I got right in her face...told her she was ruining the day and she could just sit there by herself. I made her pull a tube over to the side and sit in it. I told her if she moved even an inch from there, I would send Aaron with our friends to have lunch and swim, and I would drag her pain in the butt home! She sat there, in that tube, for 2 hrs, while the rest of us enjoyed the tubing...I should have felt bad, but I didn't.
Some days, I'm just sick to death of this WS crap, sick of making things work just for her and angry at the times when she doesn't fit in, even with her closest friends.
Maybe a better mom would have found a way to make it work for her....I just didn't even feel like trying to think of another solution. Today, I just had had enough.

Where Are The Parents?

lspinney2006@yahoo.com (Laura) — Fri, 21 Aug 2009 14:32:00 +0000

Where Are the Parents?
By Sue Stuyvesant, Parent

To make a long story short, earlier this week a question was asked by
some nitwit official as to why there weren't more parents (of special
needs kids) involved in the local PTA and other issues that have come up
that directly involve our kids. His question, which was passed on to me
was, "Where are the parents?" I went home that night, started thinking -
and boy was I pi**ed - and banged this "little" essay out the next day
on my lunch break. By the way, I took copies of this to the school board
meeting that night, gave it to a couple of influential people and it
WILL get around...... .......

Where are the parents?

They are on the phone to doctors and hospitals and fighting with
insurance companies, wading through the red tape in order that their
child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a
system that seems designed to confuse and intimidate all but the very
savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift
their 100 lb. daughter onto the toilet. They are spending an hour at
each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering
medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency
rooms, waiting for tests results to come back and wondering, "Is this
the time when my child doesn't pull through?" They are sitting patiently
in hospital rooms as their child recovers from yet another surgery to
lengthen hamstrings or straighten backs or repair a faulty internal
organ. They are waiting in long lines in county clinics because no
insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2
or 3 hours a night, and must constantly be watched, lest he do himself,
or another member of the family, harm. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are
designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they
try to make up for the extra time and effort that is critical to keeping
their disabled child alive. They are struggling to keep a marriage
together, because adversity does not always bring you closer. They are
working 2 and sometime 3 jobs in order to keep up with the extra
expenses. And sometimes they are a single parent struggling to do it all
by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything. They are trying
to patch their broken dreams together so that they might have some sort
of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this
document is granted with the provision that the document remains intact.

Quoting Michaela

lspinney2006@yahoo.com (Laura) — Thu, 13 Aug 2009 12:32:00 +0000

She's looking out the window, it's raining and the sun is starting to come out....
"Hey look, it's raining sunshine!"

Always the optimist!

Our Weekend in Pictures

lspinney2006@yahoo.com (Laura) — Mon, 10 Aug 2009 00:21:00 +0000

Thank You, Thank You, Thank You...

lspinney2006@yahoo.com (Laura) — Tue, 04 Aug 2009 12:05:00 +0000

To our AMAZING Williams Syndrome family for a great time on Saturday!
As always, it was a ton of fun hanging out with you all. I do think the Margarita Machine was a HUGE hit!
We had 17 families join us....a total of 71 people!
We couldn't have asked for a more beautiful day. It was HOT, the pool got a lot of use! I don't think Michaela or Jamie came out of the pool all day, except to eat lunch!

Some of my most favorite moments were:
...watching Michaela having such a good time in the pool with everyone
...Ari making a face at Michelle...sorry Michelle, it was tooooo funny!
...the feeling of comfort having these great people at our home
...hanging out with Kerry, Michelle, Dawn, Sharon, Nanci, Teresa and their
families in the quiet moments after the BIG crowd left.

Make a Smilebox slideshow

Getting Excited

lspinney2006@yahoo.com (Laura) — Tue, 28 Jul 2009 12:47:00 +0000

For our annual Williams Syndrome Pool Party on Saturday!!
Looks like we'll have 16 families attending....that's more than 60 people, YAHOO!!!!!

Hopefully the weather continues to stay nice and warm....we bought a solar cover for the pool and hopefully it will be above 80 by Saturday.

Can't wait to hang out with all my WS mom's!

Some Pix From The Lake

lspinney2006@yahoo.com (Laura) — Fri, 24 Jul 2009 12:22:00 +0000

We had a great time up at the lake house. The weather was beautiful.
Kids went tubing, jet skiing, played games, had a home run derby, and went fishing. Michaela has a new pole this year, thanks to Uncle Dave....she outgrew her Barbie pole....this new one is pink and purple. She was sooooo excited! She has the record for most fish caught and now biggest fish caught....she caught a 14.5 inch large mouth bass Saturday night....she named Rainbow.

Make an on-line slide show at www.OneTrueMedia.com

3rd Annual New England Region WS Pool Party

lspinney2006@yahoo.com (Laura) — Mon, 20 Jul 2009 12:07:00 +0000

DATE: Saturday, August 1st
TIME: 11:30am til whenever you want to leave
PLACE: My House!!

Bring a salad, side dish or dessert to share....and don't forget to bring your bathing suit, sun block and towel!

Email me if you would like more information!!

Some Summer Fun

lspinney2006@yahoo.com (Laura) — Mon, 13 Jul 2009 11:38:00 +0000

View from the beach at Great Island Common, New Castle, NH

My sister, my neice and nephew were here visiting for the last week, from Kentucky. It was great to see them and spend time.
It was a busy week...we went up to the lake house in Maine for 4th of July, I took them to the beach, we went into Boston and did a Duck Tour, we went shopping, and we spent time hanging out by the pool.

When we were at the beach, Michaela decided she wanted Aaron and my brother to bury her in the sand....

then she wanted them to put chips on her so the seagulls would land on her....it was HYSTERICAL! She loved every minute!

The Duck Tour was fun, even though it poured down rain all day!

The weather has FINALLY started to feel more like summer!!
We're off to the lake house in Maine again this weekend with the WHOLE Spinney family. I have my new Margarita machine all primed and ready to go!

lspinney2006@yahoo.com (Laura) — Wed, 01 Jul 2009 01:28:00 +0000

We're heading in to Mass General tomorrow for Michaela's brain MRI.
They told us to expect a long day there....I am so dreading this.

Another Year Down

lspinney2006@yahoo.com (Laura) — Wed, 24 Jun 2009 10:21:00 +0000

I just can't believe the school year is over, and it's the end of June.
It just goes by so darn fast!

Both kids had an amazing year and did really well.

Aaron had his 8th Grade Awards Ceremony on Monday morning. I couldn't have been more proud. He won awards for academics, including the President's Award for Outstanding Academic Excellence and the President's GOLD Award for Volunteer Service...he had 114 hours of community service this year.
The Graduation Ceremony was very nice. There were 300 graduating 8th graders....and that's just in Aaron's school, we have another Middle school, who had their ceremony after ours, that graduated about the same number. He'll have an incoming Freshman class of 750.
The high school he'll go to has close to 4,000 students. It's a private school and looks like a college campus...it's beautiful and has been around for over 200 years (Pinkerton Academy). He's excited to go and is taking all advanced college prep courses. They even let him take the Sophmore level engineering class. I think he'll be busy next year!

Michaela's last day of school was yesterday. She had such a great year. She made Honor Roll again....we're so proud!!! She has grown so much this year, in all areas. And, I've seen SO much progress academically. They got to visit the class they will be in next year and see what kids will be in their class. She has a fabulous teacher and a great class of kids for next year.....I know I'm excited for her!!

So, here we are. The first day of summer vacation, and it's cold and rainy out....feels more like April than the end of June. It had better change real fast...you know, like...hot...humid...80+ degree heat. The kind of heat that makes you sweat even if you're standing still in the shade.....that's what summer is!!! I'm going to start to get really cranky if that sun doesn't come out soon...and no one wants that!!

Keeping Up

lspinney2006@yahoo.com (Laura) — Sun, 14 Jun 2009 10:47:00 +0000

Well, actually, I should say 'not able' to keep up!
I'm checking in on everyone, I just can't seem to find a moment to update the blogs these days. Once the kids are out of school I'm hoping things slow a bit.

Aaron graduates 8th Grade on June 22nd....I still can't believe he'll be in high school! Michaela's last day of school is June 23rd. I'm a little sad to see the year end for them, it's been a great school year for both.

Whrilwind Week

lspinney2006@yahoo.com (Laura) — Sat, 23 May 2009 17:47:00 +0000

It's been a crazy week.
On Tuesday, my father-in-law had a stroke. He didn't tell anyone so they didn't get him to the doctors until the next day, at which point he was immediately admitted.
They can't regulate his heart and the right side of his face is effected, he has slurred speech and is hard to understand. No news as to what the treatment plans are.
It's always something.....

I had two big functions at Michaela's school that I was in charge of and had to prepare for, both were yesterday. I left my house at 8:00am and didn't get home until 10:00pm. They both went off without a hitch, a big relief and I'm exhausted! I've been a PTA officer for the last two years and next year I'm President...yikes....what am I thinking?

Michaela was supposed to have an MRI on Wednesday. I re-scheduled for July 1st. I'm second guessing that decision today. She's been having dizzy spells where she's loosing her sight....this is a new one. Does it ever end?

I'm so glad it's a long weekend. We're heading up to the lake in Maine on Monday for the official start of the summer season.

Hope everyone enjoys the long weekend!

10 Years Ago Today....

lspinney2006@yahoo.com (Laura) — Tue, 12 May 2009 10:32:00 +0000

You came into this world, completed our family and changed ours lives. You've shown us the joys of living in your excitement of everyday and the way you happily greet each morning. You've taught us that the appreciation of the small things are just as important as the big.

Happy 10th Birthday, Princess

May you always fly to your heart.....

Welcome To The Club

lspinney2006@yahoo.com (Laura) — Tue, 28 Apr 2009 11:02:00 +0000

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my friend. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful...Dude, that's retarded...Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son (or vice versa). You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet child be far better than OK. You will show them boundless love. They will know that they are accepted and cherished and celebrated for every last morsel of who they are. They will know that their Mama’s there at every turn. They will believe in themselves as you believe in them. They will astound you. Over and over and over again. They will teach you far more than you teach them. They will fly.

You will be OK.

And I will be here for you. Every step of the way.

With much love....

Join Us

lspinney2006@yahoo.com (Laura) — Tue, 21 Apr 2009 14:10:00 +0000

At Brady's Walk....
A Walk For Williams Syndrome

We are walking in honor of Michaela

Sunday, April 26th

DW Field Park ~ 331 Oak Street, Brockton, MA

Be there for 12:30.....Walk starts at 1:00

If you can't make the walk, but would still like to contribute
send me an email at lspinney2006@yahoo.com

Thank You!!!

Wooo Hooo

lspinney2006@yahoo.com (Laura) — Fri, 17 Apr 2009 19:31:00 +0000

Michaela made Honor Roll again!!

Rights Of Passage

lspinney2006@yahoo.com (Laura) — Thu, 09 Apr 2009 21:02:00 +0000

We all go through these, sometimes they're a big deal.
Tomorrow my 9 year old daughter will go through one. All 4th grade girls know about "The Movie". They giggle about it at lunch and out at recess, they've heard all the rumors about what they will 'see'. I remember doing that myself, when I was their age.
Tomorrow is the big day where all these young ladies get a taste of womanhood....they get to see the puberty movie....all about the menstrual cycle.
YIKES!
Now, I've already had this talk with Michaela when she started on the Lupron shot to STOP puberty. She got it, she understood, she asked appropriate questions, but this was done in private and she was told to keep it private. Because, at the time, none of the girls her age were having these issues. I'm certainly not against the showing of this movie, it's rather harmless. Corny, yet informative. I went to the Parent viewing so I would know what she was seeing and to anticipate how she would react to what was shown.
I'm not sure if I've ever mentioned that my lovely daughter does not have a filter...she tells it like it is and has a comment for everything. Funny, but THIS is where my small bit of anxiety is, not the topic or content of the movie, she'll be fine with that. OH, but, God only knows what will come out of her mouth....well, actually I have a good guess.
I soooooo wish I could be a fly on the wall!

Thank You.....

lspinney2006@yahoo.com (Laura) — Fri, 03 Apr 2009 20:28:00 +0000

Abi and Hannah!!!!!
I love the pictures you made.
Love your friend, Michaela