Tough Day

We are home now and resting. Our day started about 5 a.m. (who am I kidding... I didn't sleep!) and surgery began at 7:30 a.m. You know you are becoming too familiar with the routine when you put on scrubs and escort your baby into the surgical suite. Still I respect this team so much for honoring my son's comfort and giving me the peace of staying with him until he is gently sleeping. Then the waiting begins. That's the hardest part, watching the clock and every time the doors swing open you look for a familiar face to bring news. Will it be successful, have we bought some time, have we waited too long? News finally comes. A lot of stuff in his ears and a totally collapsed eardrum; it is sucked in and immobile. The surgeon spends 20 minutes just freeing up the eardrum. The t-tubes don't fit, so we have to try the grommet tubes again and the surgeon hopes the eardrum will reanimate but he is guarded and he begins talking about the next surgery where he will attempt to drill the bone. I shut my eyes, block out the information, because today I can't hear it. Today I want to be optimistic and I want to go hug my little boy. In recovery he is having a hard time waking up and he is in tachycardia. His heart is racing up above 148... he keeps scrunching his face but he looks good and his sats are good. I talk to him and his heart slows a little, then he scrunches and it is back up again. This goes on for a while; I'm not sure how long and then there is a smile and a..."love you."

Way To Go Dads!

I wanted to pay tribute to those special dads that go to IEPs and doctors appointments, give up their favorite foods to participate in a GF/CF diet, learn sign language, redesign the house to accommodate, and travel different roads. You will recognize them as the ones that have no vacation time because they've used it all for appointments. You will see them reading package ingredients in grocery stores. You will see anytime they are in a picture they are with their kids... hamming it up. When these dads speak of their child it is not of what their child can't do... it is with deep reverence for what they can do. It takes a special kind of manhood to embrace the challenges of parenting a child with special needs... a selflessness, unique courage and a quiet bravery. I applaud you.

Let's Build a Better World

I have heard, "It takes a village..." I have also heard "there are... half a million people with Down syndrome in the United States alone, or just about one on every other street corner."(Michael Berube). That's roughly the population of Washington D.C. and based on those numbers I would say we can build a better World. I know Gavin is busy building a better World. Every day he builds friendships, he changes attitudes and he spreads joy. Navigating "Normalville," does require wearing a hard hat(and sometimes the use of a hammer). When I see this smile I know no matter how long the construction takes it is worth the effort.

Your Heart Will Stay

Every now and then
We find a special friend
Who never lets us down
Who understands it all
Reaches out each time you fall
You're the best friend that I've found
I know you can't stay
A part of you will never ever go away
Your heart will stay

* I'll make a wish for you
And hope it will come true
That life would just be kind
To such a gentle mind
If you lose your way
Think back on yesterday
Remember me this way
Remember me this way
Hmm……….. this way

I don't need eyes to see
The love you bring to me
No matter where I go
And I know that you'll be there
Forever more apart of time, you're everywhere
I'll always care
*

And I'll be right behind your shoulder watching you
I'll be standing by your side and all you do
And I won't ever leave
As long as you believe
You just believe
*

Forever Love my Angel

Dear Sweet Julia,

From the moment I saw you, I knew you were the one. Wherever you were that is where I wanted to be, and the line was long behind me. Everything we did together was the best. Just hanging out eating Cheetos and pretzels, watching a movie. Partying on birthdays -- hamming it up for the camera. Bouncing in the bounce house. Blowing bubbles. Chalking the sidewalk. Sharing toys and sharing stories. Our stories, that no one else knew. As if your beauty wasn't enough, you're smile and laugh were like a magnet. For you I would do anything... and be happy doing nothing. Just laying around, snuggling and holding hands.

I can't imagine trick-or-treating without you. As a fairy, or a princess... no one could sparkle more. I can't imagine prom without you. I can't imagine anything without you.

My mom joked that your family better like us, because we were going to be together for a long, long time. She knew the way I doted on you that I was a goner. My heart was spoken for and I could only hope you felt the same way.

I guess God felt I needed an angel more than a girlfriend, because that's what you are now. I sure will miss my girlfriend... every minute of everyday. Someday, when I see you again, I hope you'll save a dance for me.

I love you Julia.
February 26, 2002 - February 27, 2009

Then All The Reindeer Loved Him

As they shouted out with GLEE... Come on, you know the words. Are you humming them in your head right now? That's it.

Sing for the season. Sing with joy. We are recipients of amazing gifts, and we are witness to miracles all around. Sing with celebration.

May your holiday be wonderful and may you be surrounded by those you love.

My Grown Up Christmas List

As I look at these three amazing young men... I know I have the best gift I could ever wish for. I get to watch them grow up every day. I get their, "I love you's." It was only a moment ago in my mind's eye memory that their lives hung in the balance. I learned then that they are borrowed from God and I need to be grateful for every minute... and I am. Still, if I were to crawl up into the big warm lap of the man in red velvet I would ask for a few things...

Let my children know a world that has a moral code. Where car manufacturers, home lenders, and even politicians have to live up to their promises. Where hard work, honesty and integrity are virtues to attain. Let my children know that we are all connected and it is good to help one another. Let them know there are things more important than the bottom line... and those things aren't things. Let my children receive a quality education, one which prepares them not only for a higher education but for an independent life contributing in our community. Let my children have access to health care... where going to the doctor isn't a luxury beyond our grasp. Let my children know laughter. Let them know that there is greatness in giggling until you can't catch your breath. Let them know the joy of playing and sharing. That while there are serious issues to deal with silliness sometimes gives our mind the leap it needs to find a solution. Let my children know patience. In this world where we have instant pudding, microwave meals, up-to-the-minute communication and credit in 3 minutes... let them learn to wait. Old saying, "Good things come to those that wait." Let them not be in too much of a hurry to grow up. There is truth in only getting to be young once, despite what plastic surgery can do... we get one go around on the ride of life. Let my children know quiet and peaceful. This world is so noisy... so filled with sound-bites. We are constantly bombarded with chatter. Let my children know how to listen, especially when we disagree. Let them have the ability to extract the meaning in the message. Let my children know acceptance where they don't need to look, behave, or be a certain way to belong. Just being is enough. Let my children know the Lord, not the one of religion that divides people, judges people and punishes people... but the one and only Lord whose door is always open, prayers are always heard, and shoulders are broad enough to carry all our burdens... Let them be on a first name basis.

This Child of Mine

It would be so easy to hold you so close to my heart. To keep you only for myself. To know that you are always safe. To have your big squishy hugs belong to just me. To know that your soft warm hand holds only mine. But a gift isn't a gift until you give it away. And you are a gift. So each day I send you off to share your gifts, but know that not a minute goes by that I don't hold you close to my heart.

You Are Incredible

Not everyone will recognize your superhero powers. Like many supers you will go through your days disguised as an ordinary citizen, revealing your powers only when most needed and to other supers... To the janitor at school that cleans up after hundreds of kids and never complains about how kids leave the cafeteria or bathrooms, you will recognize him as a super; running up to him with an embrace and a high-5. You will recognize his powers of perseverance and humility. To the child in after school care who's parents are so busy trying to hang onto their home that they don't have the time or energy to give her... for her you will have super hugs and share a book. You will recognize her powers of patience and understanding. To the elderly lady whose hand you hold so gently and hair you pat admiringly. You will recognize her beauty and stop time if only for a minute. To the boy who is last in his class that the other kids tease... for him you will have a special hand shake (knuckles) as you recognize the leader he is to become. To the stranger needing a smile you will extend a warm hello, greet them with a handshake and learn their name because you recognize that we are all connected. To the mom you will always sing a song for her and dance just because, pick flowers to give her, wait patiently when she is late and tell her just that you missed her. You are Incredible.

He's Looking (Up) To You

"Eyes that find the good in things, When good is not around.
Eyes that find the source of help, When help just can't be found.
Eyes full of compassion, seeing every pain.
Knowin' what you're going through, and feeling it the same."

(adapted from an Amy Grant song)

Will you be that someone that sees him? Someone who looks beyond the disability, the differences, the disadvantages... and really sees him? His light, his intuition, his strengths. His ability to give love and laughter; embracing life. Will you be that someone who stands beside him, encourages him; celebrates him? Because he's looking up to you.

Families Come In All Shapes and Sizes

I got mail today about Prop 8 that REALLY makes me MAD. I feel like we are back in the 50s and 60s when we burned books and told children they couldn't come to their neighborhood school because they weren't white. This proposition is about DISCRIMINATION, period. Vote YES if you discriminate or NO if you don't. Pretty simple really. Not one person is going to stop being "gay" because we all vote "yes." I am sorry, if you see "gay" as a problem, this proposition does nothing to "fix" it. Children's books will still be written about gay families, families of divorce, families experiencing cancer, families of disability and multiracial families, etc. Not every family looks the same and it is important for all children to learn this. Families come in all shapes and sizes, and just as a child doesn't ask to be born disabled (or the sibling of someone who is, or the child of someone who is) neither does a child who's parent is gay. So when that sweet faced child comes on television and says "Did you think of me." Well perhaps no they didn't think of her in her nice nuclear family, but perhaps they thought of the child next door or the three in her class or the 50 in her school. Proposition 8 is a hate crime waiting to happen.

Marriage is a legal contract and the only qualifier should be two people of legal age. I would add "and of a sound mind" but I don't know too many people that really go into marriage that way, as it is the euphoria of love that gets us there in the first place. Marriage in "the church" is an entirely different discussion and it is up to that religious organization if they want to recognize the union and bless it or not. Again, this proposition will not stop churches from performing marriages.

The definition of a domestic partner should suffice on benefits and next of kin but for two people wishing to proclaim their love this does lack a certain umph. Go home and call your wife your domestic partner if you think it is the same. My guess is she'll tell you what you can partner with.

Anyway, I love my family and I do not feel we are missing anything. We are whole and we are complete, but if at some point in the future our family grows I want it to grow in love. If my children come to me and share that they have chosen a life partner I want to embrace their partner and see only the love of that union. I tell you now, I am not going to have one thought of, "what will the neighbors think."

Speaking of neighbors... did we not all grow up with Sesame Street? For 39 years we have been living with, learning from and loving Ernie and Bert. Are they brothers? Foster Kids? What...? Hello, they share a room. But no one ever FREAKED out about that, did they? We are not listening to commercials on the harm that allegedly was done if we thought for a moment of what this relationship between these two puppets might imply. And despite this possible relationship, Ernie and Bert have both made WONDERFUL teachers for our children.

I think I've vented enough, maybe... hopefully.

They Grow Up Really Fast

One minute you are holding them in your arms so fresh from God and the next minute you are waving to them as they head off to school. It goes by so fast. I think that it is a misconception that you get to keep special needs children forever. They still grow up and they still go out on their own -- in their own way and their dependence on you changes.

Each age Gavin is I always think, now this is my favorite... that is until my next favorite age comes along. I am crazy about this boy. He is fun and funny, so loving, clever, witty... he just always keeps me smiling (and on my toes)! I love to look at photos of him remembering how precious he was at each age and stage but I also love the laughter and joy we have now.

Enjoy every minute.

Funny Face...

In case you are keeping track (hi Nique) this is blog 24. This is Gavin's nee-ner face. I am not sure if that is spelled right and I am not sure nee-ner is even a word, but it goes with ha, ha and 'told you so. It also reminds me of a funny story. You see, Gavin likes to create words and condense phrases into one word. Pretty smart if you think about it. We do it all the time and call it acronyms and we have whole languages we use in texting, most professions, and sports. So my amazing and witty son gets the flu, and this was a bad one where he alternated laying on the cold bathroom floor with throwing up so hard over the toilet that I thought veins in his neck would burst. Anyway, now that I've sounded like House, back to the story. So after a bout of puking Gavin was hugging the toilet and resting his head on the edge of it and he looks up at me and he says, "Narfnish." (Barf and finish) Then he goes onto more puking and he looks up at me and says, "Nuffnish." (Enough and finish) And then he finally says, "Narfit." (I can only imagine this is barf and @#$% it!) This has become a secret family language.

One Week to Go!

I know I am harping on this, but only one more week to go before we VOTE! I have never seen an election that has so many people so passionately on sides and others so conflicted at that same time. It is really important to read up on the issues. I am not here to suggest how anyone votes just to emphasize how important it is that you do vote. I read and repeat, "It will take strong leadership to build a world free of unnecessary barriers and discrimination for people with disabilities."

First Field Trip

Friday, Gavin went on his first school field trip. His class went to the fire station. He really seemed to enjoy it. The fire fighters taught the class to crawl under the smoke to safety (using a sheet as smoke). The kids also learned to stop, drop and roll.

The visit to the fire station inspired great conversation at home about what we should do in an emergency. We talked about where we would meet if we had to leave our house in an emergency (a neighbor's). We talked about what we have in our house to help warn us of an emergency (lighted smoke alarms with batteries we replace every New Year's day) and that sometimes these alarms warn us that dinner is ready. :)

We also talked about other helpers we have all around us and that we should remember to thank them whenever we see them.

I See In You

I see in you the whole universe. When I look into your eyes I see stars and sparkles and far away places. Things known and unknown that are so much bigger than you and me. In your eyes I see Heaven.

Did you know what makes your eyes so beautiful is actually a defect? The sparkles and stars in your eyes are called Brushfield spots and it is a birth defect of the connective tissue of the iris. Did you know that people buy contacts with Brushfield spots on them? Sometimes it is funny what we call perfection and what we call defective.

When I look at you I just see sparkles and stars. I see in you a person with so much more compassion than I have risen to. I see a simplicity and joy in you that is so admirable. A playfulness and laughter that is more harmonious than any piece of music I have ever heard. Your quick smile and unconditional love for everyone which you give so freely without it being earned or deserved. I see in you so many qualities that define humanity. I see in you a better world... gentler, kinder, peaceful. I see in you... the future.

I Hope You Dream

I hope you dream of love and laughter. A world of acceptance and understanding. Of important work you can do and a family to come home to. I hope you dream you can do anything and be anyone. The limitations you face are only obstacles that you can get over, go around or plow through because you are so strong. I hope you dream of super hero capes, of space rockets and walking on the moon. In your dreams I hope you hear cheering and applause for all that you have accomplished and all that you will do. I hope your dreams are filled with celebrations, birthdays, holidays, graduations and weddings. And you see us all there, family, friends and colleagues celebrating with you and for you.

Learn Everyday, Play Everyday

It is so important to remember we all learn everyday and we should all play everyday. It is easy especially in this fast paced world where we get so busy doing stuff, stuff, stuff... to take a moment to ponder what we do stuff for and take a laughter break.

For instance, since beginning this blog I have learned that committing to 31 days -- Everyday was perhaps a bit unrealistic in my expectations of my "creative" time, as there are days when, well you don't want to hear what I have to say, and yet other days I could write on and on. So what I ought to have committed to was 31 posts in the month of October because that I could do and you would actually want to read it. Notes for next year, right?

Since starting this blog I have also learned that those that comment surprised me... as did those that did not. People I thought would race to the blog are still getting around to it, those that I thought wouldn't be interested read faithfully. Who knew? I am humbled and thankful.

I am at a scrapbook event this weekend. When I return I will have photos to put up for both blogs, so check back in when you have some time to read (six posts) on Monday. Yup, I said that.

Speaking of playing... here's Mister-mister at the top of the slide. When I think about learning and playing, seeing Gavin at the top of this slide captures that. You see, when Gavin first started school this year he only wanted to play in the sandbox... which included throwing sand (not so good if you're his classmate). Anyway, he worked on that, we brought sand toys for him to share and play nice with, which really helped his confidence. Now he runs right by the sandbox heading straight for that "kid filled" jungle gym, the monkey bars and the slide. It's all about learning everyday and playing everyday.

This Child

Dear New Parent,

Congratulations on becoming a parent of a child with Down syndrome.

You don't know it yet but you are to be envied. You have a child with something extra, something more and something special. This something extra is extra LOVE. One day you will think back to this moment and know how silly all your fears were, how misplaced your sorrow was and how what you though would be a burden has become your most precious gift.

Never will an outstretched hand be softer than this child's. Never will a smile be more precious than this child's. Never will an "I love you, mama," be more sincere than this child's.

Today you may wonder, "How am I going to do this?" Or "Why me?" and soon you will hear yourself saying, "I can't wait another minute to hold this child." And "Why me, why was I chosen to receive this amazing child... how did I get so lucky?" One day soon, you will no longer be able to imagine your life without this child... you will count the minutes until you see this child again.

Soon you will read stories about amazing people with Down syndrome. Artists, musicians, athletes, teachers, medical care providers, actors. You will read about people with Down syndrome working, living independently, even marrying. Their stories will inspire you to dream all your dreams for this child.

AmbassaBear for Special Needs Awareness

Today Gavin was the AbassaBear for the Ripon Community and Youth Commission Health Fair. He wore a bear costume and handed out bear squeeze-stress toys. I was there also (duh) but I worked our booth, Special Needs Advocates For Understanding (intentionally acronymed SNAFU). I am with him in the first photo and I am in the second photo. Our SNAFU President is with Gavin in the last photo.

Working an event like this brings a lot of awareness to destigmatizing disability. Today everyone just saw a cute bear, handing out hugs and toys, with a quick smile and a strong high-5. So often we are afraid of what we don't know, so getting to know Gavin as a hugable bear helps people remember him warmly. So many people came up to me telling me how sweet he is, that he is adorable, a cutie, a doll. This connectivity makes it much easier to ask for inclusion in school, and activities in our community. Today my primary responsibility was to talk with people who are concerned their child or a child they care about "may" have a disability and to talk to people who need help navigating the maze of services available to children with disabilities. Sometimes it is just someone to talk to that has a similar experience, so they can ask the questions of what it is like for me. Are our experiences similar? If so then we feel better about the way we are feeling. We search for "normal" even as our awareness that we are no longer tethered to normal becomes so clear. Similar becomes our new normal. Fortunately, there is a bear-hug nearby.