Sunday, December 27, 2009
Wednesday, October 21, 2009
Monday, October 19, 2009
Dakotah turned 16 on Saturday. We ushered the night in 60's style, with retro clothes, lots of Beatles music, tie dye stuff, and peace signs, baby. Add in a dinner and dance, and a fun bartender for mocktails, and the night was fantastic.
I hope Dakotah remembers the night for years to come. She wrote on her facebook page that night:
“Life gives us brief moments with another...but sometimes in those brief moments we get memories that last a life time...”So true...
Here are some pictures of her magical night.
Getting ready for the night with her friends Alex and Jess:
Her friend, Nick, showing her the picture he took of the "Imagine" memorial in NYC at Strawberry Fields. Telling her the story of the guy who decorates there every day.
Opening the frame that has tickets to "Never Shout Never" in it:
Wednesday, September 09, 2009
The girls started school on Tuesday. Dakotah has a pretty full course load, but she seemed ready to return and dig into the routine. She has just two years left of high school, and even she seems a bit shocked by that - its going by as fast for her as it seems to be for me.
Paige was more than thrilled to start back at school too - she loves it, loves being there, loves being with her friends, loves the routine. Unfortunately, there have been some bumps for her start this year - we haven't figured out busing just yet, and I was more than shocked to arrive Tuesday after school to pick her up to discover that her aide had been cut to just a half day.
I was most upset because it was done without speaking to me, or even informing me, and even her teacher and the aide herself were surprised with the news on the very first day of school.
She has an IEP in place, and I'm confident that it will be ironed out, as it seems to be mostly a scheduling blip made during the summer by the former principal, but it isn't solved yet, and I've got my hackles up about it - ready to make some noise if it doesn't change by week's end.
Right now, she is physically dependent for help with basic needs like walking and toileting, and its not even comprehensible that anyone would think she could go a half day every day without assistance in those areas. Couple that with the fact that she is non-verbal, and needs someone to work with her academically during the day, and well, it is not only unacceptable that they do not carry out the IEP as outlined, it is illegal.
I'm trying to be calm and nice about it, but I'm also determined and quite ready to be assertive in any way that will bring the quickest result. The nice way would be to schedule meetings and bring representatives in, etc, but the fast way is probably to make some noise publicly - the whole squeaky wheel theory, you know.
So, we'll see how that goes.
My job has been really stressful lately too - my boss isn't sure of the direction of his company, and every day seems to bring a different "game plan" to the table. Its difficult trying to follow rules and procedures when they change on a daily basis. So, I don't know where that is going either.
And of course, regular "life" stuff happens - the engine on my van went; it was a $2,000 repair. Next week, we are putting in a new oil furnace at a cost of $1,500. Back to school uniforms and expenses have crept up on me - its always something :)
Last Friday night, Dakotah was at a friend's house for an end of summer party, with about 20 or 30 of her friends from high school when one of the boys was called away suddenly. They found out later that his dad had died very suddenly of a heart attack at the age of 52.
All of Dakotah's friends went to the wake tonight - the first one Dakotah has ever been to. It was emotional for them all, and powerful to know that they were all supporting one another and leaning on each other to be there for their friend Cody.
I was proud of her for going, and would have liked to be there when she did, but it was sort of a rite of passage for the kids as they all went in to express their sympathy together.
As I was driving to school to pick Paige up today, I was thinking there isn't a single spot in my life that doesn't feel stressful. Of course, that isn't completely true - everyone is healthy, well-fed, has a nice warm bed to sleep in, etc.
But, I was feeling a little whiney, to say the least.
Then, I arrived at school, went into Paige's classroom, where I was met with the most beautiful little girl-our friend Emma - who ran to me, jumped in my arms, hugged me tight, and said my name over and over again, and then jumped up and down with excitement.
With a greeting like that, who wouldn't leave with a smile on her face, no matter how goofy the world is acting right now?
Wednesday, August 19, 2009
She can fast forward or rewind the dvd with exact precision to the spot she wants to watch, and she has spots on her favorite movies that she likes to watch over and over again. Anyone who visits our house leaves us humming a tune or singing a song that they can't get out of their head for probably hours after, lol.
So, the other day, she couldn't find the movie she wanted. She had the case, but no movie. So, she picks up the case, looks for a dvd in the group that has no writing on it. She then took the blank dvd and the case of the movie she wanted to the computer, handed it to Wayne who was sitting there, then opened the door to the dvd writer on the computer, put the dvd in, and waited, hoping that Wayne would find a copy of it and burn it for her.
She is so smart that girl of mine!!!
Saturday, August 08, 2009
Tonight, coming back from the bathroom, Wayne let go of Paige's hand for a few seconds, and she STOOD ALL BY HERSELF in the middle of the living room. No other support, no walker, no wheelchair, no wall to hold on to, nothing but air, baby!!!
She was scared to death, and wasn't too happy until we started screaming and celebrating, and then she realized it was something to be proud of.
She couldn't figure out how to sit down without help, and didn't lift her foot to take a step, but she stood and it was glorious!!
How lucky I will be to witness first steps again!! Yahoo!!!
So, as I realized it was still there, I reached to pick it up, and as I did, my foot collided with the big column base at the foot of our stair railing. It hurt like a beeotch but I shook it off - until I laid down in bed, and touching my toe to the sheet sent throbbing, pulsating pain into my foot. Every time I moved, it woke me up.
Geez. Now its all bruised and swollen looking and pushing its two brother toes off to the side.
You don't realize how much you use a tiny little toe, especially one that's not even on the side of your foot. It stretches with every step. Every time someone comes within 10 feet of me, I scream, "watch my toe!!!"
Kirby is like a magnet to it - he's stepped on it about 20 times already.
I'm pretty sure I'll recover from this tragedy, lol, as I did the same thing about 15 years ago when I tripped on Wayne's golf bag. Its already feeling a bit better, but it would be nice if I could suck some sympathy out of it for a while. :)
Good thing I don't have big feet - I can't even keep these small ones out of the way of anything.
I think I need to invent a toe sling.
Or maybe a toe cast.
And then you could all sign it in teeny tiny letters.
Monday, July 27, 2009
Today would have been my dad's 77th birthday. He died nearly 12 years ago, before he even had a chance to grow old. I think of him often, and miss him dearly. Most milestones - his birthday, holidays, the date of his death - pass by with a peaceful calm feeling, knowing he is still here with me, and that one day I shall meet him again.
I'm not sure why, but today its hard - really hard - to miss him. Its nearly 2 a.m. and I'm sitting quietly in the dark, thinking of him, and praying for the strength to get through the day without the deep, engulfing sobs that I feel wrapping their hands around my throat.
I'm lonely for him. He was such a good father.
In The Light
A shadow of joy flickers; it is me.
I told you I wouldn't leave.
My spirit is with you.
My memories, my thoughts
are embedded deep in your heart.
I still love you.
Do not for one moment think
that you have been abandoned.
I am in the Light.
In the corner, in the hall,
the car, the yard
These are the places
I stay with you.
My spirit rises every
time you pray for me,
but my energy comes closer to you.
Love does not diminish,
it grows stronger.
I am the feather
that finds you in the yard,
The dimmed light
that grows brighter in your mind,
I place our memories for you to see.
We lived in our special way,
a way that now has its focus changed.
I still miss you
and long for the
many words of prayer
and good fortune for my soul.
I am in the Light.
As you struggle to adjust without me,
I watch silently.
Sometimes I summon up
all the strength of my new world
to make you notice me.
I show you that I am here, and you feel me.
Called to you by your grief,
I try to impress my love deeper
into your consciousness.
As you should, I call out
to the Heavens for help.
You should know that
My soul is now healthy.
Your love sends me new found energy.
I am adjusting to this new world.
I am with you and I am in the Light.
Please don't feel bad
that you can't see me.
I am with you wherever you go.
I protect you,
just as you protected me
so many times.
Talk to me and somehow
I will find a way to answer you.
Whatever your question,
whatever your fear,
I will hear you
I will see you with my new eyes.
I am learning to help wherever you are,
wherever I am needed.
This can be done
because I am in the Light.
When you feel despair,
reach out to me.
I will come.
My love for you truly does
transcend from Heaven to Earth.
Finish your life with the enthusiasm
and zest that you had when we were
together in the physical sense.
You owe this to me, but more importantly,
you owe it to yourself.
Live life for both of us.
I am with you because I love you
and I am in the Light.
Sunday, July 26, 2009
Its funny, but I almost forget the dreams until I have them again, and then I wake up thinking, "there is that darn dream again." Last night's dream was the one about my sister finding out she is pregnant. In the dream, I see her go through all the stages of pregnancy, with her giving birth to a little boy. Then the dream fast forwards, and I see the little boy about two years old.
In the dream, I am near the boy, but I can't touch him. And I never learn his name. That bothers me, both in the dream, and when I wake up. And I ache for this little boy, totally jealous of her getting pregnant by "accident."
There is so much strange in this dream - first, Kathy's boys are 27 and 31, and she is, well, past child-bearing age, lol. I'm very close to her and her boys, and don't understand why I dream that I can't get near this child.
And, in my waking hours, I am not, not, NOT desiring to be pregnant, lol.
This dream, and the few others that I keep having bother me for days after I have them...I feel vulnerable, haunted by them.
Does anyone else remember their dreams so vividly?
Sunday, June 28, 2009
Wednesday, June 10, 2009
I thought this was a great idea - I'm always writing letters to my children, and just the other day, Dakotah and I were discussing this...how sometimes I write her a letter and give it to her, and sometimes I just tuck it away. I told her it made me feel good to know that when I am dead and gone, and she is going through all of my "stuff" that she will find pieces of her life and words of wisdom from her Mom in places she least expected it. In fact, I would like to add the words, "whisper words of wisdom" to the edge of my tattoo - because I think that's one of my most important jobs as a Mom.
So, here is my letter to 15-year old me, on my birthday!
Today, you are 15. Later tonight, your friends will throw you a surprise birthday party in Kathy's basement. It will be one of the first sort of girl-boy parties you have, and you will remember this party for years to come.
You're just beginning to grow up, and although it may seem slow to come to you now, adulthood is just around the corner. I wish I could offer you the wisdom of the years in the way that a 15-year-old could understand. Enjoy your high school years with vigor - laugh often, study hard, and avoid high school drama.
In a couple of years, you will be voted most likely to succeed in your graduating class, along with most sensitive and, ironically, best couple. Just to let you know, that best couple thing isn't really going to work out, as your long time high school boyfriend is actually gay. He's gonna figure that one out in a few years, and you are going to have to take the ribbing of people who tell you that you 'scared him gay.' But, not to worry, there will be a few other suitors along the path over the next few years.
You should really listen to the advice of some of your teachers, especially your English teacher, Mr. Gigi, who tells you over and over again that you are a writer - that its natural and easy and fluid in you. Don't be so worried that its not a real job - give it your all, and maybe it will be. Believe him when he tells you words are powerful, and that you have the power...
Oh, and take advice from your business teacher too - even though you are learning to type on a manual typewriter, and can fling that carriage halfway across the room faster than most, this talent will soon be obsolete. You won't even believe what its eventually replaced with. Still, she has some good advice - sit up straight, put your feet flat on the floor, no chewing gum and DON'T LOOK AT THE KEYS.
And as long as we're listening to advice from teachers, keeping one body space between you and the next person is always a good idea too. ;)
That permed hair of yours - you're going to wonder what the hell you were thinking someday. Same goes for that blue eyeshadow, the turned up collar on your shirt, and the three piercings in each ear. You're probably still going to love the smell of Love's Baby Soft and Jovan Musk though.
And I'm pretty sure that you'll re-discover clogs in the form of Birkinstocks at some point in your life.
Don't believe it when people tell you that you can't change the world. Its nonsense, and uttered only by people who don't realize the power of one person, of paying it forward, and of remembering to be grateful.
Some things you might consider NOT doing in the next few years - getting into bars underage on the arm of your brother-in-law, mooning a policeman at a town hall dance, showing up at a Halloween party dressed as Woodstock from Peanuts, only to realize its more of a drag queen kind of party, popping out of a birthday cake, winning a "party naked" t-shirt, harrassing the Chuck E Cheese mouse...
And if you decide not to take my advice and still do those things, be glad that this thing called "Facebook" has not yet been invented.
Be prepared for lots of surprises in your life. At 15, you cannot even imagine what the next 30 years will bring you - the friends you will make, the friends you will lose, the jobs you will have, the journeys you will take. Relish them all, and realize they are all forming a part of who you are and who you become. Shake off the bad stuff, and fall to your knees and thank God for the good stuff.
I know you love school - spend your life being a student. Absorb the world like a sponge, learning life's lessons in places that you least expect to find them. Remember, everyone has a story, and those stories are what make us human. Share yours and take great interest in others.
When you are voted Most Sensitive, it will be because you are an emotional person...something you will debate over and over again whether that is a good thing or not. Don't mistake being sensitive for not being strong. You are going to surprise yourself and everyone who knows you with your strength in the years to come. You are going to learn to appreciate that you love deeply, cry often, and laugh even more. You will understand and be grateful and you will not want to change that.
You will be blessed. Many, many times over. You will look back on your life often and be so surprised at the journey. But, you will not wish it away; you will celebrate it.
Its gonna be a great life - see ya in 30 years.
Thursday, June 04, 2009
Its that crazy, fun time of the year where its busy and fun, but almost too busy to be any fun, lol.
The girls have just a few weeks of school left. Dakotah will be halfway through high school in just three weeks. She has had a few meetings at school to try and pick her courses for the next two years, with the "what do you want to be when you grow up" thought behind it.
She really isn't sure, and is really a bit stressed about it, so afraid she will make a wrong choice, or that life will somehow throw her a curve ball that she can't anticipate, and that she will wish she had taken another path.
Of course, life is a journey, not just a path, and no matter what she decides now, she will encounter lots of surprises in the years that follow. Heck, I'm 45 and still probably cannot answer that "what do you want to be when you grow up" question.
Maybe, I'm just not sure I'm all that grown up yet. :)
I want to give her great wings to fly, and want her to know that the world is hers for the grabbing, but I do it all with a big lump in my throat, knowing how fast she has grown up before my very eyes.
We look forward to new phases in her life with great anticipation, and a tiny bit of bittersweet "seize the moment" flavour.
She is such a great kid, and so far, fingers crossed, these teen years have been no more trying than a constant quest to keep her room clean...a quest I simply cannot seem to succeed at, no matter how much I nag at her to do it.
Paige is doing wonderfully - she is not walking on her own yet, but she loves being outside, and begs to go for a walk at least 10 times a day. She loves being outside, even if it means in a stroller for right now.
We are installing a pool for the summer, and I'm so happy for that - both girls love the water, and it will be so good for Paige's physical strength. I'm going to want to sneak way from work many afternoons, I'm sure!
Life is strolling along at a very normal pace for all of us now, and I'm not going to complain about that at all!
Wednesday, May 06, 2009
My friend, Camille's, daughter had her Confirmation on Monday night. I don't know if you can tell, but if you look closely at her left hand, she has her fingers crossed - she is either making a wish, or telling a lie, rofl.
I was so honoured and happy to be her sponsor. It was such a magical night - Emma was so sweet, and so adorable, and so affectionate all night long. Every time she looked at me, my heart melted.
As I said to Camille, it was as if the Bishop were tying our heart strings together as he Confirmed her. I felt so bonded to her, and tied to her soul in an incredible way. Every few minutes, she would just gently pat my hand, or kiss me so softly. We were both just adoring one another.
I know we all go through times early on when we feel like everyone is looking at our children because they have Down syndrome. We worry that people are staring at us or making judgments about us.
That feeling eventually goes away, and I can't even remember the last time I worried, or even thought about anyone noticing Paige had T21.
But Monday night, well....I really felt like all eyes were on us. There were probably 50 children with parents and sponsors at the Cathedral, and I felt like every single parent and sponsor was looking at Emma and me - with envy and jealousy that *I* got the privilege of standing beside her, putting my hand on her shoulder, and praying for her. I felt like every set of eyes in the room was looking at us, wishing they could be us, as we snuggled and hugged through the service.
My heart nearly burst when Emma was standing on the kneeler in front of me, and reached around and took my hand to put it on the pew in front of her, so I was protecting her on both sides, and then, as if it weren't just right, she took both my hands and wrapped them around her waist. I could have fainted from pure joy at that moment.
As I whispered to her over and over again at the end of the ceremony "Thank God for you, Em, thank God for you."
Thursday, April 23, 2009
The dentist's office shares the same waiting room as the neurology department. While we were waiting for Paige to go in and have her teeth cleaned, we were people watching as we often do. Paige love, love, loves to people watch, and is content to sit and do it for a very long time. She loves being in a mall where she can see many people come and go.
For me, I am a dreamer, I guess, and I believe that everyone has a story to tell. When I people watch with Paige, I try to imagine the story that I would be told if I were brave enough to ask - imagine the beautiful, maybe heart-wrenching stories I could learn from an old lady out buying lottery tickets, or a little girl happily buying her first pair of school shoes.
So, it was with this kind of absent minded dreaminess that Paige and I saw baby Michael. Now, I have no idea if that was his name, but I think he kind of looked like a Michael. He was about 3 or 4 months old, dressed in a navy blue and tan plaid shirt with little khaki pants on and a sprig of white blonde hair on the top of his head.
Baby Michael and his parents were coming out of the neurology department, and both mom and dad were visibly upset. Dad was nearly gasping for air, as tears streamed down his face, and he struggled to hold it together. He was clinging to his son for dear life. Mom was red-faced, and tear stained, with that deer-in-the-headlights look that is never good.
They were escorted across the hall, to the surgery clinic. Once they were left alone for a minute, Mom folded into Dad's arms and they rocked back and forth and just hung on to one another, rubbing baby Michael's back as they did.
Within a minute, they were again whisked away into an office.
I so wanted to shoot them magic words bubbles - and I'm not even sure what those words would be. All in a moment's time, I wanted to tell them that it was o.k., that they were in good hands, that they were strong, that the love they had for their baby would make them nearly limitless in what they could endure for him. Maybe I wanted to say, "I know, I know" or "I understand."
But, of course, I don't know much of anything, other than they had just received devastating news of some sort.
I pray that the desperation that I witnessed was fear - fear before acceptance of something that could perhaps be fixed, something that would allow them to love and cherish their dear boy for years and years to come.
I pray that the days ahead for them are good ones, that the life lessons that are about to be thrust upon whether they asked for them or not, are good ones.
Most of all, we prayed for baby Michael tonight...a sweet little boy who's story or name we will never really know.
But, I'm sure when Paige and I said our prayers, Our Good Lord knew exactly who we meant.
Sunday, April 19, 2009
Wednesday, April 15, 2009
Here is my latest attempt at home-made Easter eggs - truffle-like and filled with chocolate, vanilla, nuts or coconut inspired by Bakerella - yummy, but a little goes a long way - we still have too many left!
These are still in the rough stages, still drying, so there's lots of drippy's on the edges.
Thanks to Dakotah and my friend Julie for their groovy decorating skills!
Tuesday, April 14, 2009
If your heart needs to swell so much it feels like it will burst,
If your soul needs a hug so warm and tight you never want to let go,
If you want a feel good moment that will carry you through the day,
Then take just seven minutes to watch this video - you'll be so glad you did!
What beauty we might miss...
Tuesday, March 31, 2009
Sunday, March 29, 2009
If you like to cook, like to eat, like to read about cooking or eating, need a recommendation on a product or an ingredient, then you MUST bookmark this blog and visit frequently.
Julie is the consummate cook - she spends hours devouring recipe books, and then tweaking the things she reads into delicious one of a kind food. She is also a great researcher, so if you are trying to decide which mixer is the right one for you, she's the girl to go to. She can find you the best, at the cheapest cost!
I can't wait to see where Julie takes her blog - I'm excited to see decadent recipes, and consumer information about food warnings, specialty recipes like low sodium meals, or how to prepare a whole week's worth of meals on a shoestring budget in just one afternoon.
Make this blog one of your dailies - you won't be sorry!
Monday, March 23, 2009
I miss you terribly, and long for the sound of your voice. I still have that same dream I've had since you died - the one where you are sitting in the corner chair of my dining room, while I am entertaining guests. Only I can see and hear you and you are telling funny stories and commenting about the people around the table and the things they are talking about, making me laugh right along with you.
Its a strange dream, and its funny that it keeps happening, almost identical every time I have it. I've begun to look forward to the dream, and am always happy when I wake up to remember it. I can see your crystal blue eyes so clearly in the dream, and can hear your voice as if you are sitting next to me.
Its a strange combination of emotions - this missing you so badly, literally aching for my dad to be alive again, and then feeling so happy and so blessed to have had such a great father who left us too young, but with amazing memories of an incredible man.
I imagine for anyone who truly loves their children, there is no greater honor than to die knowing your children adored you, to know you were a good parent, and that you made a huge difference in the lives of the people you created.
Please know that you excelled in all of these areas, Dad. I have adored you forever, and will continue to adore you forevermore. You guided me and shaped me into the person I am, and I am forever thankful to you for that.
As much as I miss you, it was your soul that made you an amazing father, not your physical body. And I feel just as close to your soul as I ever did. That makes the missing you part just a little bit easier.
I'm hoping you've saved a seat for me in Heaven, because the minute I get there, I'm going to be jumping from cloud to cloud, looking for the man with the gentle voice, the white hair, and the amazing eyes - and I'm going to sit right down beside him, and tell him that I love him.
And then, Dad, you are never going to leave my sight again.
Love you with all my heart,
For any of you who haven't experienced 15 and 16 year olds yet, let me just tell you that the crazy 8-year-old parties you've witnessed are nothing. Those you can organize, and at least somewhat guide the children through the chaos. The cool things are balloons and treat bags and messy cake and ice cream.
When you're a teenager, the word party takes on a whole new element. Dakotah thought that perhaps 20-25 people would be the appropriate number of guests. I kindly suggested 8-10. We settled on 14. I might not have bargained quite enough on that one.
So, set up with a whole list of household chores to d0 (hey, I had to get some benefit from it!), Dakotah cleaned and organized, and did everything I asked of her last week. Which was actually pretty darn nice.
And when the honored guests began to arrive, I did what I promised - I slinked myself, my husband, and our youngest daughter up the stairs so that the guys and girls could do their thing.
I wish I had my computer upstairs at the time, because I had so many thoughts about this little get together...
Its strange being on the "grown up" side of things. Listening to the kids talk and laugh and just be goofy reminded me of my teen years, and they truly don't seem like as many years ago as they really are. It seems strange that I was the supervisor, the one "in charge" - when I so vividly remember being a kid just like them.
I have always believed that one of the keys to successful parenting is to know your children's friends. As much as a pain as it is to have kids hanging around your house all the time, I think it is well worth the investment in time (and groceries!) to have them be familiar with your home, and for you to be familiar with them.
I want to know what the kids Dakotah hangs out with are like, and I want them to know what to expect from me...where I am willing to compromise, and where I am absolutely not willing to compromise.
Dakotah did a really good job as hostess; she turned music and voices down when they got too loud, she stopped the sillies when kids were being crazy, and she checked in with me often. She even tolerated me coming and going every hour or so, just to kind of make my presence known.
I have to say, I think she really does have a pretty good group of kids she hangs out with. Even though the language sometimes left a bit to be desired when I wasn't downstairs, they were polite and respectful when I was. Some of the bits and pieces of conversation that drifted upstairs was a bit interesting at time, but nothing particularly shocking.
I was a bit surprised at the "couples" that seemed to be there - but these are kids in their mid-teens, and its a rite of passage to have a boyfriend or a girlfriend; its the time to begin to learn some of the intricacies of relationships, and to learn about who you really are. I felt kind of old and like my own mother when I wanted to sit between them on the couch. ;)
I haven't experienced the boyfriend thing with Dakotah quite yet, so getting a little taste of it was just another notch on the belt of this motherhood thing.
Right now, she is a social butterfly, who travels in a big pack of kids. Every weekend there is a party, or a movie night or something going on. I spend gads of time taxiing her here, there and everywhere. Most weekends, I don't see 5 minutes for myself, and there are times when I just want to scream "enough already."
I really do want her to love her high school years, to have fond memories of it, and to make good friends that she may carry with her for a long time. I want to have a good relationship with her, where she feels that she can talk to me about anything. I'm not seeking her friendship, but her trust in me as her mom, which sometimes takes on the role of disciplinarian and advisor, and yes, sometimes even dictator.
I don't know that I will agree to parties at our house too often - I was just too nervous, feeling a bit too out of control, and fretting a little more than I probably should have. It was just too many bodies to be responsible for.
But, we all lived through it, and everyone seemed to have a good time.
Every day these two girls of mine bring me new experiences, and new things to ponder. I wonder what our next adventure will be!
Although I'm two days late posting for World Down Syndrome Day, I didn't not want the day to slip by without comment from me.
I'm so happy that people from all over the world celebrate Down syndrome on March 21st. Its a wonderful feeling to share that kinsmanship with people I will never know, and with many, many people I have gotten to know simply because one tiny little extra chromosome happened in our lives some years ago.
Before I had Paige, and admittedly, perhaps even for a while after I had her, I never understood when parents who had children with disabilities would say they wouldn't change a thing about their child.
Surely, that must not be true. O.k., its easy to say that you love your child just as they are, but wouldn't you really want them not to have Down syndrome, or any of the other number of things that a tiny genetic blip could make happen in a body?
Just last week, when I was discussing genetics with my sister, she said, "well, of course, if there were some magic pill you could give her that would make her walk and talk and...."
Hmmmm....I began to think. What if there were a magic pill? Would I be rushing to get a prescription written? Excited to give it to Paige right away?
To be honest, if there were a magic pill that would have taken away the medical issues she has had - esophageal atresia, gall bladder problems, reflux, orthopedic problems, the list goes on and on and on...I may just sign up for it.
Because its never easy to see her hurting, to face another surgery, or another health set back. Its ingrained in my body as a mother to want her to be healthy.
But being "healthy" has very little to do with her developmental delays, or her extra chromosome.
I really have no interest in THAT magic pill. I truly do understand now what it means to love your just child as she is. I love every single part of her - her silly giggle, her sweet hugs, her goofy little ears, her starfish hands, her brushfield spots, her long skinny legs...
I love the good stuff and the rough stuff. I love how she has this intricate way of communicating with me that involves very few words. I love strolling through milestones, and jumping up and down with excitement at goals that have taken forever for her to meet, when I might otherwise have missed them completely had she raced through them.
I love the journey - the people we meet along the way - the experiences we have - the way the world looks a little more beautiful seeing it again from her eyes.
I love this little soulmate that God has given to me, keeping her just a tiny bit closer to me, tied to my heartstrings with a tiny little extra chromosome, that will allow me a few more years to claim her as mine, all mine.
I love the wings she will sprout, that will slowly let her fly away from me, and the beautiful eyelashes that will look back at me and flutter, and make my heart soar.
I love every single thing about her, and no, I would not change a thing. Not a single thing.
Perhaps most bothersome is that what you said really was a slip of the tongue - something you said that you immediately realized was wrong, and needed to be taken back. Because that tells me that perhaps in the confines of your own space, when the lights are down, and you are just "you" and not the President of the United States, that you do make these kinds of jokes. People don't slip and say words that aren't part of their everyday language.
Certainly, you understand that your conduct must be beyond reproach. That "I didn't really mean it" isn't an acceptable answer.
A great many people in your country have embraced you as the President primarily for your stance on disabilities. In assuming this position, you have accepted the responsibility of setting a good example for the people of our country. Your words, as well as your actions, will be scrutinized.
I'm sure this is one mistake you won't soon forget. I think that's a good thing.
Sunday, March 15, 2009
As John says, there is no nice way to use the word "retard." If you are using this word without thinking about it, consider some of the other words that you would never, ever call someone, and add this word to the list.
Please. Please consider how hurtful it is, how deeply ingrained the indignity is when someone utters it in a mocking tone.
If you know me personally, please do it for Paige. If you are visiting this blog because you have a family member with a developmental delay, please spread the word to your family and friends.
There is no shame in having a developmental delay or a disability of any kind. Trust me, some of the greatest human beings you will ever meet are ones that you may have just walked right by without even noticing or acknowledging. Do them and yourself a favor and see others as fully living and loving human beings, no matter what the differences.
Please stop using the R word - replace it with respect.
Saturday, March 07, 2009
What Dave says is so true - each of us creates a little hole in this world through our words and actions, through our sense of humor, or our grumpiness, or our ability to love, or our desire to express an opinion or any other of innumerable ways.
I write often about Paige and sometimes about her differences - but her differences are really no more grand or more pronounced than anyone else's. Maybe they are a bit more visible to the general population, but in all of our striving to fit in, to be like others, I believe we all carry an innate desire to be distinct and memorable too.
Sort of like a carbon footprint, only maybe a little nicer, the hole in the world we create is up to us. Some of us will choose a nice, neat little hole, with smooth edges and not much definition. Others will leave a giant blast that says "I was here!" in enormous, eye-capturing ways.
I think our hole will be in the eye of the be"hole"der - as I can imagine that I would describe Dave's hole in the world to look differently than Joe would describe it.
Over the past few days, I've contemplated the people I know and what their holes would look like - a big variety of shapes and sizes, and edges to be sure. Yet, everyone has created something to be remembered - something distinctly theirs.
Perhaps this thought of Dave's - that we all have a hole in the world that is ours, is a great equalizer. I imagine none of the holes will say "this person's IQ was..." or "he stuttered" or "she had seizures."
Instead, just like I said to Dave, we'll see some smooth spots, and some rough spots, and probably something funky and groovy too.
Certainly, there are people like Dave who's little hole in the world will never be forgotten. And the rest of us will never be quite the same for seeing it.
Sunday, March 01, 2009
Dakotah: I hate when you post pictures of me on your blog, then everyone can see them.
Me: But you posted them on Facebook, and you have like 500 friends that can see them.
Dakotah: Yeah, but your friends are old.
So, my dear old friends, here's my smarmy daughter :)
Sunday, February 15, 2009
Paige was pushed up to the side of the table with her back to the restaurant part of the food court. She was dressed for Valentine's day - with her big puffy white jacket on that has big pink and teal and blue and green and yellow hearts on it. Her hair was down, and she looked cute as a button, if I do say so myself.
As we are eating, this young man about 15 or 16 wheels by us in his electric wheelchair. He is very blonde, with striking blue eyes. He goes by us, and tries to get a glimpse of Paige - definitely trying to check out the girl who uses the same means of transportation that he does.
Because of the way she was facing, he couldn't get a good look at her. So he came back by. And then he went by again. And again. Finally, he parked himself half way across the food court facing us.
We were all like "omg, he is TOTALLY checking her out."
It was so funny, most especially because Dakotah was also with us. And if any of you have ever had a 16 year old daughter, you know the preparation involved in going to the mall - the contemplation of what clothes to wear, how to fix your hair, putting on makeup, selecting the right shoes - the list goes on and on.
No one seemed to notice Dakotah - but that boy sure seemed to want to get a good look at Miss Paige.
That's the 2nd boy in a month that has been sweet on Paige.
Look out, Dakotah, your little sister is gonna be competition in a few years :)
Saturday, February 14, 2009
We were just remembering some of our favorite Valentine's moments. There are, of course, those traditional memories, when Wayne and I were young, and he was trying to woo me - and would send dozens of roses to me leading up to Valentine's Day, with some really neat gift arriving on the day itself. Or the hours I spent madly in love with him 250 miles away, scouring the Hallmark stores for just the right card - and not, being able to decide on one, would send off many to him.
We were laughing because of all the sentimental ones we sent to one another, the only one we can actually remember the words to was one I sent to him that went like this: (sorry, adult content, lol)
Outside of the card: "Know what I like most about being your sex kitten?"
Inside of the card: "Playing with your squeak toy."
My dad was always romantic to my mom on Valentine's Day, and would always bring her yellow roses, her favorite, for that day. But, the last year he was alive, just a month before he died, he wasn't able to do much for her, but she brought him a little stuffed raccoon that was dressed in a sweater with hearts on it, and a little red mask, along with some candy.
The last day we saw him alive, Paige (not quite a year old) was laying on his bed with him, cooing at him, and just being near - and he showed her the raccoon. She was playing with it, and I heard him say to her, "why don't you take care of this for me."
She still has it, and needless to say, it is very, very precious to us.
When Dakotah was in Jr. Kindergarten, just barely 4 years old, she spent almost an entire week copying the names of her friends onto Valentine's Day cards, and signing them all. I remember she couldn't fit her whole name on one line, and she tucked the letters of her name anywhere she could fit them - too cute!
And one year, her and I spent hours and hours and hours cutting dozens of hearts out of pink and red felt, and then tying them with ribbons to her pants and shirt, and putting them in her hair for "heart day" at school - the class that wore the most hearts got a pizza day. I'm pretty sure she was instrumental in helping her class be the winning class.
On Paige's first Valentine's Day in school, she was in what we called the "black period" - her favorite color was black, and everything she colored was black!!! Our whole house was decorated for Valentine's Day in BLACK hearts - taped on cupboard doors, the refrigerator, every surface we could find. She sure colored a lot of hearts that year, lol.
Way to go goth, Paige. heh.
So...keep it simple today. Make a memory for your loved one. Write "I choo choo choose you" in lipstick on the bathroom mirror. Tuck a red paper heart in someone's pocket. Lift your little one's shirt up and cover his or her belly in kisses (note, this also works with husbands, lol). Trace a heart in the frost (or dirt) on your car's back window.
Be goofy and sentimental!
Thursday, February 05, 2009
Its not always easy being the navigator of this ship that sometimes takes us through rough waters. Especially with Paige's very limited verbal skills, I don't often know when she is feeling sick. She has an incredibly high level of pain tolerance, and does not indicate to me that she is not well until she is really not well.
I think I, and probably every mother of a child who is medically fragile, find myself in a constant battle with my instincts. Am I overreacting? Am I taking her symptoms too seriously? Am I worried about her having something really bad when its probably just a cold or a stomach bug?
Or conversely, am I trying to brush it off, hoping she will perk up in a day or two, and we can avoid a long wait at urgent care, or another needle prick, or yet another unpleasant procedure performed on my child who is already feeling miserable.
I don't want to be an alarmist. But I do find myself googling symptoms when she is sick. Could this be "it?" The inevitable shoe dropping that silently hides in the back of my mind - a constant reminder of just how incredibly lucky we are to have this little girl in our lives, how lucky we are that she has received such great medical care, and that she is working hard to thrive.
And...I don't want to be the mother that the doctor looks at in disbelief, that I didn't recognize how sick she was, that I hadn't been in a week before, trying to help her get better.
On top of that, is that maternal ache that every mother feels when her child is sick. I would take 10 times the sickness, 10 times the level of pain, in order to spare her a single moment of it. I fret and wonder, how long has she been feeling unwell? With her cast coming off, we expected some discomfort, and indeed, she has been grumpy and moody for a month now, something very uncharacteristic of Paige. Has she been sick this whole time?
When Paige was younger, I was actually more overprotective of Dakotah, because I always had this sinking feeling that I was going to be so in tune to Paige's medical needs, so on top of them, that I would miss something big in Dakotah, and she would become the child who's life we were begging God to save.
I tell Dakotah all the time that I'm learning to parent her just as she is learning to grow and become independent - that there is no manual, and that we must do the best we can do at this job called life. Each day brings new lessons, new worries, and new joys, and thankfully, most days the joys are so great that the worries and necessary lessons become just a small part of who we are.
I thank God that He has bestowed me with the gifts of my children - constant reminders to never take anything for granted, and to fall to my knees daily and thank Him for the splendor of what He has given me.
Tuesday, February 03, 2009
She seems to have a lot of different things going on at once - which is why the symptoms have seemed so willy nilly to me, I guess.
Her weight is also really down - from 60 lbs in October to 36 lbs last night - that's a lot of weight on a kid her size. So, we will keep monitoring that, and work on getting some meat on her little bones once she starts eating again.
Poor monkey was so, so sick...I'm glad to see her a little less miserable.
Monday, February 02, 2009
She is drinking a litte bit, but only milk - I imagine the juice is hurting her mouth. The last solid food she had was last Tuesday. I'm worried about her, but was told at the ER yesterday that it was just something she had to get through. She slept for nearly 36 hours straight from Saturday night to this morning - only waking up when I woke her.
She is a bit perkier today, and has been awake a few hours, so I think she is on the mend, but its a sloooowwww mend, lol...
Friday, January 30, 2009
She still can't really push herself up to sitting yet, and is barely able to roll from side to side, and then three days ago, she came down with a bad cough - really yucky sounding lungs, but no runny nose or anything.
She had been vomiting when she choked on mucous for the first couple of days, and now she is vomiting as soon as she has as much as a sip of juice. She isn't eating or drinking at all, and is so listless and just looks really, really sick.
She is still peeing, so she isn't dehydrated yet, but she is one sick little kid...
Tuesday, January 20, 2009
Monday, January 19, 2009
"PAIGE IS BACK?? Um, I forgot how cute she is, can I be her boyfriend?"
Delivered with a big set of dimples, and a sweet smile, who could say no, lol...
Tuesday, January 13, 2009
At least that's what Miss Paige would tell you freedom is! Her cast came off last Thursday. Finally...it is behind us. Forever, hopefully.
These first few days have been rough for her - as her muscles are reacting to being out of the cast and she is having a lot of tremors. She is incredibly stiff and doesn't want to be moved around too much just yet.
And her skin is pretty gross. When the cast first came off, we couldn't even wipe it because it would peel off when it was rubbed. Now, its getting a bit crusty and crackly. I didn't know this until her cast came off last year, but skin actually regenerates inside of a cast similiar to the way it grows in the womb - a moist environment that makes it like newborn skin.
She is even covered in a fine layer of hair, like a newborn is - and its very funny, because its exactly the shape of the cast - from her ankle up on one side, from her knee up on the other. Even the little hole that was cut out for her belly is not furry, but everything else is.
She's still very unsure of herself, and is just starting to sit up - she had her first bath on Sunday, and I think it felt wonderful, because she was anxious for another last night.
She has a hard time regulating her body temperature, as the cast was sort of an insulator, so she doesn't like being cold at all!
So, next week, she will try half days at school to see how it goes. She will go in her wheelchair for now, and we are getting a walker for her, that she will be able to start using within the next few weeks. Her surgeon guesses it will be between 9 and 12 months before she starts walking independently, which I think is a good estimation - she was just, just starting to take a few steps before this last surgery.
She has been a bit tempermental, which is soooo unusual for Paige - pretty demanding and hard to please, lol. But each day is getting a little better, and hopefully it won't be long before the last two years are just another story for our family to tell.
Thanks so much for all of the well wishes and prayers - they surely helped!
Sunday, January 04, 2009
and a new one just begun.
Tomorrow marks the official end of our Christmas holidays. The routine begins again, as Dakotah heads back to school, and Paige and I settle in for a week of appointments and housecleaning, and trying to get some work done, all while making sure there is plenty of snuggle time for us.
After a few days of post holiday let-down, I'm ready to start the New Year. It will be the first year since Paige was born that we are not anticipating an upcoming surgery, and I'm anxious and excited at the prospect of settling back into our lives without this hanging over our heads.
On Thursday, fingers crossed, she will get her cast off. And thus will begin an anticipated year of rehabilitation for her, as her muscles work to regain their strength, and her new hips learn to support her, and she starts taking those first tentative steps yet again. Its been 15 months since she walked independently and, God willing, these surgeries will pay off, and she will conquer that skill again one day.
She has flourished in her cognitive skills while she has been in the cast. Its been fun, and amazing to see how quickly she is learning and picking up new things. She is fascinated with words and letters and reading, and I'm so, so happy about that. A lover of words myself, and someone who can get lost in books for hours, I'm so happy that she too cherishes books and words.
Paige has never been one that has leapt through milestones; instead, she meanders, and takes her time, stopping often to linger over the tiniest new task learned for months and months before moving on, so this has been an unexpected and delightful surprise for us.
As I should have learned already after nearly 16 years of parenting, you just never know. You never know what the next day will bring to you, what the next challenge will be, or what the next celebration will be.
Both of my children remind me daily that there is no roadmap to this thing called parenting - there is no anticipation of what will work in six months, there is only now.
This year has been a big year of learning and growing with Dakotah as well. As I watch my oldest daughter grow into an amazing young woman, I have had to refine my Mom skills many times this year.
The balance between trying to keep an honest, open relationship with her, one where she feels that she can come to me, and talk with me about anything, and trying to remain the parent, the one who sometimes has to say no, or be strict is not often easy.
There are no black and white lines, and the greatest wisdom I have gained over the years is the ability to think before I speak or act. Not always an easy task, sometimes analyzing a situation for a while makes the judgement a bit clearer.
The challenges to a young woman are great, and she is handling them all quite well. Its very hard for me to want her to have the very best time of her life during her high school years, and at the same time, wishing she would just stay home with me, and let me tuck her into bed at 8:00 like I used to!
I constantly lecture her that we all make mistakes, but there are mistakes and then there are mistakes. A dumb mistake is saying something to a friend and hurting their feelings needlessly, and then having to make amends. That is a mistake of growing up; and there are lessons to be learned.
But, some mistakes can never be corrected; getting into a car with someone who has been drinking; putting yourself in an unsafe situation, etc.
Little by little, I have to both guide her and let her go with nothing but a fervent prayer that she will make wise and good choices.
I have definitely learned to "pick my battles" as any experienced parent must do. She has rules that she knows she cannot break; and some that she knows she can probably persuade me to bend a little too.
Last week, she finally talked me into allowing her to get a "monroe" piercing...a tiny little diamond between her nose and her lip, just to the left. A year ago, I would have NEVER thought I would have allowed it, but she has researched it and paid for it herself, and is taking good care of it, and I know, when its all said and done, if the worst thing she ever wants to do in her teen years is staple her face, well, so be it, lol.
She has handled the challenges of being a teenager so well; getting good grades, having good friends, making good choices. I'm so proud of her.
I wonder what these two silly, crazy, wonderful daughters of mine have up their sleeves for 2009 - what they will challenge me with, what they will surprise me with, what will make me cry and what will make me laugh.
I hope I will be calm and wise, and have all the answers for all of the challenges they present to me. Most likely I will not, and I will learn right along with them about this life of ours.
One thing I know for sure. They always, always, always know they are loved. Without exception. Without condition. Without hesitation. Without reservation.
With everything that I am, perfect and imperfect, they are loved.