Our "Before"

When you look at this picture you probably see a boy who loves to swim, is happy, and cooling off a summer's day with a great time in the pool. You would be right, but there's more to this picture than you would ever guess.

This picture took 12 years to get.

Shaun and I have endured many scratches and the pulling of our hair and skin to get this shot.

No, I am not that crazy of a scrapbooking mom.

But I am a mom who knows that I, more often than I would like to, have to literally pull Anthony through an experience I know he would love once there. But is far too afraid to try.

It wasn't always this way.

THIS is a boy LOVING the water!

For many, many years we couldn't get him into a pool, the lake, or even on a boat. Shaun and I even had code words and game plans for the mere attempt of getting him back into these situations. That used to be the very things he loved. Maybe because he outgrew the bucket, maybe because he watched Nemo one too many times,

or maybe it was the way his brain grew.

Starting next week, we are beginning a 12 week journey that could change everything.

About a year ago we came across information about the Brain Balance Center. I am not sure who gave it to me or if I discovered it on my own. I don't do as much research as I used to, but I never really turn off the "what could help him reach his potential" switch that moms like me have.

Selfishly as well, I saw this as a way to help our whole family.

We went to a speaker that talked about all the things that children operating with one side of the brain stronger than the other have to deal with. And we saw a detailed picture of our son. When we left the event, we left feeling like some of our "issues" could be changed. We didn't have to accept some of what we were dealing with. The things that became our "normal". And most of it had nothing to do with him having Down syndrome. We left with hope.

It was never a matter of "if" we were going to do it, just when and, good gracious - HOW? It's not considered "medical", so insurance wasn't going to pick up the tab. And therapy isn't cheap!

Through a series of events that could only be God parting the Red Sea for us, we are starting this adventure NEXT WEEK!

I decided to share our story here.

One - I'm sure what I have to say will not fit in a Facebook status.

Two - I can update a lot of people at once

and three - most importantly - I don't want to forget where we are right now. I want to see the results. Less chance of selective memory here.

I don't want to forget what our "normal" is, because I want it to change. There is a guarantee of some kind of change - but no guaranteed measure of how successful.

The therapy consists of sensory and cognitive therapy. These are designed to strengthen the "weaker" side of his brain. To "even out" the sensory input and help him to process things better.

So... maybe...

-we won't have to avoid movie theaters

- or stop and wait all the time for the tongues in his shoes to be "just right"

- or "fix" the numbers on his Vikings jersey to be perfectly placed on his shoulders (and then have to change the shirt anyway)

- we don't have to wait until he is finished to move on to the next thing. (Although we did just get through a little and can now use a bookmark at times).

- we could all just get in the car, and not have to rearrange where people are sitting so that he will buckle up and move on

-we could have less meltdowns over whose turn it is, what's for dinner, who gets to play with whose toys, the sharpness of a pencil, what movie we watch, what park we go to, and so many others that happen so randomly and out of the blue that we are often left so lost as what to do

I've felt like the worst kind of mom in the way that we do more to avoid him falling apart than teaching him how to process events. But I feel some hope that maybe because of this growth problem, it may not have mattered what I did. He simply can not process things the same as the rest of us.

I have already learned some basic understanding of this concept and SO much can be explained by it. My favorite was when, after all the evaluation results were complete, this doctor explained SOOO much of Anthony from just reading the results - and he had never even met Anthony. It was such an amazing moment to have this guy describe what we "probably" deal with due to the results - and have him hit the nail on the head in so many ways. He's seen it THAT much. And he's seen improvement in all those areas.

Knowledge really is power! And since even that day, I have been given a blessing of patience when we come into things that don't feel so "random" anymore. Like the one day recently when I took the kids to Ikea and Anthony caught a glimpse of himself in a mirror. And that his hair was sticking up a little bit. Unfortunately, because he had his coat on, every time he tried to flatten it down with his hand, he created such static electricity that it just kept getting worse. The girls, (who ALWAYS astound me with their own patience and understanding with their brother) and I just waited for him to take care of it. But as it got worse, he got more and more aggravated and was heading for a shutdown. So, as 20-30 people continued to pass us by, I pulled a 1950's mom move, licked my hand and stuck down that hair. I grossed out both myself and Bella with that one (and now, maybe you), but it worked. And 20 minutes after that first glance in the mirror, we moved on. Made it about 5 feet and then he wanted me to go home and get him a different car to carry.

Have I mentioned that, along with avoidance, I have a master's degree in distraction?

In three months, some of this could look very different.

Or... it could even look the same.

But we would have tried.

And that's just what we do.

To My Girls

I have been blessed with two very beautiful girls.

I write a lot about how Anthony changes my life.

But these two...they have amazing ways of impacting my life as well.

There's a phrase I like to say from time to time that goes:

"Whatever you didn't learn from your parents, your kids will teach you."

So very true.

There's a book out there called "I was the perfect parent. Before I had kids."

Now I have never read this book, I don't know who wrote it or anything about it, but the title alone, speaks volume to a million things in regards to parenting. Whatever I thought I was going to be, or do, as a parent was almost completely lost the moment each of them were laid in my arms. You can plan all you want before kids, but call it preparing, because once that child comes to you, and in each and every interaction with them, it all becomes less about you and more about them.

You will need to be much more flexible.

Becoming a parent has a way of making you really look at yourself, your values and your priorities.

And you really need to take into account who they are, each one on their own.

Like with these two.

One is emotional, one is logical.

One is sensitive, one is practical.

Both are relational, but in different ways.

One is academic, one is artistic.

One is a planner, one is more "free".

One is opinionated, one is a people pleaser.

One is a giver, one is a hoarder.

Both are full of love and spirit.

Both love animals.

Both are friendly.

One is more black and white, and one is so very gray.

Both love pink.

One is more cautious, one is more brave.

One uses band aids, one picks.

One is more subdued, one is more colorful.

One reads, one paints.

One hunts, and they both fish.

One can be bossy and one cries.

Both are loving.

Both are protectors of their brother and each other.

And both are fun and very delightful to spend time with.

And the giggles from the other room reminds me how they can both comfort

and make the other laugh.

And because of them, I have had to take a very hard look at myself.

Because both are observers too.

They watch what I say, what I do and how I feel.

And when I see the things that worry me for them,

I realize that I may have passed on more than brown eyes and curly hair.

In each interaction with them, more than ever before, I carefully think about what I say to them.

Because I want the follower to lead.

Because I want the people pleaser to value who she is.

Because I want the Free spirit to be a little more careful.

And the subdued to reach higher.

Because I want the academic to nurture her creativity and the artist to gain wisdom.

I want the more emotional one to not have her heart broken so easily.

And I want the logical one to be less serious.

Because I don't want them to confuse pleasing others with simply caring for others.

Because I don't want them to ever lose who they were destined to be,

and have to rediscover or "find" themselves in adulthood.

Because I want them to stay connected to their inner spirit.

Because I want them to love who they are, as they are.

Because I want them to grow,

And to continue to shine and sparkle as they do now.

Because through good times and bad, I want them to know and keep the JOY in them.

Because "happiness" can come and go with the wind.

These girls are precious to me.

They help me to make sure they always feel valued and honored.

And I have become very grateful to them.

Because they have blessed me with the knowledge

of just how much they watch what I do and say about myself -

that I have HAD to learn to value and honor myself.

Because all kids learn by watching!

And not necessarily by listening.

These little gems are teaching me to back up what I say,

with what I do.

And it is a challenge.

But one I will bust my tail to take on -

At even the chance to give them a better life.

So that they can always see in themselves

what I see in them.

Their beauty, adventure, simple sweetness and uniqueness. Their kindness, joy, patience, and honor. Their creativity, loving, caring and considerate skills. Their amazing talents. Their hope, courage, sensitivity and fun. They are precious and treasured gifts to everyone around them.

I pray each day to fill their hearts with value, honor, belonging and a sense of such worthiness. Because they are worth so very much to me.

Loving them is easy.

And I commit to loving them - through building and strengthening them, the best way I can.

My Bella and Emma Rose.

Thank you for the gifts you've given me.

The day I became "Aware".

October is Down Syndrome Awareness Month.

I have no idea when October was designated as the month to bring education and awareness to the country about Down syndrome,

but I've known about it now for 13 years.

Anthony was born with it and the "awareness" for us, came in June.

I think back now, and giggle at the fact,

that I became "aware" I was pregnant in October.

I have spoken to churches, schools, and doctors about Down syndrome in order to create awareness and educate. I did it a lot in Iowa, some in St. Cloud and even Fargo. I can tell you about the chromosome stuff, the many possible medical and developmental concerns that come with it and the many effective therapies you can do to help a child grow to their potential.

But, it really doesn't create awareness to throw out stats and science.

People become "aware" when there is a name, a face or

an experience to go with it.

I never noticed people with Down syndrome like I do now.

Because now it means something to me.

And it means something to my husband, and our daughters, and our family and friends.

Our awareness is heightened now.

Our education is personal now.

Our appreciation is deeper now.

Because of this little boy.

Who has made us "aware":

Of how delicate and fragile life can be.

Of just how close you can come to losing a life.

Of how much we take for granted.

That some of the most simple things, are the really big things.

That some of the easiest things, can be really hard.

That major miracles can come in the form of baby steps.

That in order to speak, get dressed, alternate steps on a staircase, or write your name in a straight line - can take years and years of practice, because SO MUCH goes into those things.

That hitting a pitched ball can make you stand up and shout!

That when he reads a book, zips his coat, does his homework or pushes the pedals on a bike - you can be moved to tears.

That life can be completely unpredictable.

That there is a bigger plan.

That there is such a thing as unconditional love.

That when he finally becomes more independent and you need to take a back seat -

you have to catch your breath, and find the chair before you fall down.

That although dreams change, dreams still exist.

That a million things can be said, without a single word.

That a hug can change everything.

That a true friendship is a rare gift.

That caring for someone so much can be thrilling and terrifying at the same time.

That some people just get it. And some just don't.

That people do still stare, and say mean things, and judge.

And that people do love, and accept, and encourage.

That you can hurt, and cry, and be so exhausted and frustrated.

And that you can have more patience, love, and joy than you ever thought imaginable.

It's one thing to learn about Down syndrome.

It's another to learn about someone with Down syndrome.

Handfuls of Hope

Shaun and I started this "evaluation" thing on our way back out to Missouri to pick up the kids from Camp 2 summers ago. We took advantage of the time and really looked at each child, their strengths, challenges, and our hopes for them. We then wrote up some action steps that we could take over the next year to encourage them to meet their challenges, by using their strengths, and incorporating experiences for them to grow in confidence, ability, and development.

Kind of a "purposeful parenting plan".

(I'd like to think 13 years of IEP's and goal setting had nothing to do with it.) ;-)

In our evaluation of Anthony this summer, we came to a monumental decision. Although we didn't know it at the time. The weeks to follow have proven our decision to be our best move as parents yet. As most of you know, or in case you just haven't seen him in awhile, Anthony's Down syndrome and Apraxia have made the understanding of his speech nearly impossible... still. And this communication issue and the battles that come with it have left us simply heartbroken at times. To know he is trying so hard to say what he wants, and can't be understood. To have been locked inside, for ever. To be so alone at times. I pray that my own pain watching him, IS my own. And that it doesn't kill him like it does me. I know it hurts him, but I have no idea to what extent.

While Shaun and I were talking, we realized a few things. We are at a roadblock. He understands so much more that he can say! And the speech, although improving, is nowhere where we thought it would be by now. And we realized it is just time. Time to just change things for him. Time to just unlock his silence. Time to do SOMETHING.

When he was a baby "they" said speech would come. But late. So we did sign language as a baby while we waited. It worked amazing! At seven, we were still waiting, and we found out about the Apraxia. He was showing "behavior issues" and Shaun and I talked and decided we wouldn't be the parents that "gave up", but we would increase the sign while we continued to wait until his speech came. He took off. And has continued to use it ever since.

But this summer, we realized we are there again. His understanding is more than his expressive, and he's acting up, and we need to help him. And his "speech" is still so poor. And he's 13!!! We've dragged him to Arizona and Ohio for specialists, he's been in speech therapy FOREVER and this is where we are. The realization of it sometimes just angers me. For him, for us, for his friends and family. People just struggle connecting with him, and him with them.

I have these dreams sometimes. Where I pick him up from school, or he walks into a room I am in, or we are at a store, and at some point, in each dream, I look over to him as moves closer to me, we meet eyes, and he says something - clear as crystal. Sometimes it's "Hi Mom", or "good morning", or "can I get a new car?". But it's always the most beautiful thing, and I crumble at the miracle of it in tears.

And then I wake up.

And try really hard to go back to sleep, for just a little while longer.

I still want that.

"Giving up" that speech will come is too much for me to ever say yet. I still want it too much. I want to hear about his day, know what he wants for his birthday or Christmas, maybe even what his dreams are about.

I just kept thinking it had to sound the same as everyone else. There was no reason to think it wouldn't happen. No reason that "with time" it would come. But it's just not. It's better, but it's just not there.

Then one day - BAM - it hits me like a ton of bricks.

Sign Language.

He uses it.

A lot!

We haven't been using it as much as he has, no one does. Because he hears fine, he understands fine, and no one 'has' to learn it. So we didn't, and neither did anyone else. Us, family, or school. We all knew the "basics", and that's all we did.

It occurred to me while Shaun and I were talking that if sign was his only option because he was deaf, we all would have learned it. Wouldn't have thought twice about it.

And so, we all will.

Because right now this option IS the one.

I have cried so much, and felt so sick from the guilt that I didn't see this sooner. We left it all on him, to remember it all, and only use what he knew. We didn't expand it for him, teach him new words. Sign WITH him, so he wasn't alone. I still feel so bad.

But THANK GOD, it isn't too late!!

Since starting more signing a month and a half ago, he is SKY ROCKETING!!! His fine motor skills are so much better and now he can make them sooo much more clearly. He even got a teacher for reading this year who is fluent in sign and is teaching him more words!! And he will have her for the next 3 years! We got videos and now he even uses the new words he's learned to tease me. He is telling me about his day! We've started reading his favorite books in as many words of sign as we can, and he LOVES it. Lights up! He signs full sentences and his finger spelling is really fast! I am stunned at what is happening right before my eyes.

I selfishly battled with this decision so much because I didn't want to give up my dream of "talking" with him. (ugh.) I thought if we stopped the therapies, stopped trying so hard, that it somehow meant we were giving up on him. It just didn't click that it was never that at all. We needed to give IN to him and what he was putting right before our eyes. Now that I have changed my perspective - it has changed my life!

It astounds me that my dream is coming true right here and now! Yes, I had to redefine what my dream meant, but the dreams ARE coming true. Because he IS saying "hi mom" when I pick him up from school. He IS saying "good morning" when he comes into the room. And he IS asking me for a new car every time we go to the store.

He just does it with his hands.

Clear as crystal.

And he tells us he loves us. All the time.

We have hope again!

Handfuls of it!

Dedicated to My Husband Shaun

In a few days I will celebrate being married to this wonderful man.

For 15 Years.

I am amazed sometimes.

One - for how long that sounds, but doesn't feel.

And two - that we've made it.

We have made it when we shouldn't have.

We have made it when at times one, or both, of us has wanted to call it quits. We have made it when the statistics of married restaurant managers say we shouldn't have. We have made it when the statistics of being parents to a child with a disability and staying married say we shouldn't still be. When stress like moving, changing jobs, and economic turmoil says we should have been done, and we're not. When you marry someone after only dating for 2 months, you shouldn't STILL be 15 years later.

But we are.

And NOW, we understand how all those things have strengthened us. How all those things make us who we are. How fighting through all those things have made us fight for this. Because NOW, we get it. NOW we are married. Committed, self-less, loving and strong. We feel great and thrilled to be celebrating this mark. Because this mark is more than 15 years. It marks us making it. Surviving it. Growing from it. And loving it! THIS is married. THIS is worth all we went through. Those eyes and that smile and this love has been worth it all.

We have had many wonderful times along the way, don't get me wrong. I am just being honest. This isn't "Fakebook". Our marriage has gone through a lot, but we worked at it. And now we are enjoying it so much more than we ever have. Because we see each other with new eyes. Eyes that are looking at each other, and not what the world tells us we "should" have, or how it's "supposed to be". We both see each other with loving eyes, that have have seen it all, and still love, without a doubt.

I don't know his take on all this, but I know he loves me. He thinks I am talented and beautiful even - and especially- when I don't. He encourages and supports, and listens to me.

And he is a great dad.

This man - Who encourages me, and our children, and prays over all our lives.

For us to feel loved, cherished and valued.

For us to have opportunities to grow and to be sure of who, and how wonderful, we are.

And for us to experience as much as life has to offer.

This man - Who will always hold the hands of those put in his care.

To guide them, lead them and to look out for them.

Who takes honor in being the person to provide for his family.

Who is proud of who we are.

Who sees the potential in each of us.

This man - who was asked to care for someone none of us expected.

A boy who needed a kind of love that was blind to expectations and conditions.

Whose love is of purity and honor.

A love of respect that recognizes the gift in the blessings of this child.

This man - who either literally or figuratively, carries us all.

Through the rocky times or the calm breezes.

His love - loves.

Happy 15th Anniversary to my dear husband Shaun. Who has blessed my life, and continues to each and every day. Thank you. For respecting me, honoring me and loving me. And for these beautiful children. I don't know what is in store for us next, but I glad we are doing it together.

I love you.

World Down Syndrome Day

Today is World Down Syndrome Day!

And today I celebrate the blessing of a life that I never could have dreamed of!

The life I have isn't what I imagined when this little boy was born.

It's not what I pictured, it wasn't what I asked for, and it sure wasn't what I had planned.

But if I had planned it,

It wouldn't be the miracle that it has been.

And I am NOT this amazingly creative.

Today's date: 3-21 was chosen specifically to mark this great day just a few years ago. It was chosen because Down syndrome is characterized by the presence of a 3rd chromosome on the 21st pair in the genetic make-up of my little baby boy, and so many others like him.

Now I am not any kind of expert or scientist. I have spent more than my fair share of time with doctors, but I don't pretend to be one. I am not even a licensed educator. And I am far from a biologist or geneticist. But I am a mother. A mother with a theory.

A theory of what just might be on that 3rd chromosome. At his birth, the doctors had seen many "characteristics" that clued them in to this possible diagnosis. I suppose maybe some of them are due to his 3rd chromosome. He had almond shaped eyes, he had these little white flecks in the blues of his eyes that are called Brushfield Spots, he had one crease in the palm of his hand that stretched all the way across, and he had a thickness of skin around his neck. He also had low muscle tone.

But there are other things that come on that "little extra" that no one explained at his birth. The stuff that we have learned along the way on this journey since that first overwhelming day.

Here's what I think comes on that strand of DNA.

Innocence. He always has, and always will, possess a state of innocence about him that is to be treasured. He remains childlike in his excitement over simple things and is still quite honest in his expressions. He will let you know if your shirt is un-tucked, or hug you whenever he thinks you might need one. He will have $20.00 to spend, but only buy a car for 50 cents - and be thrilled!

Love. He loves without reservation, without requirements, without judgement, and without expectation of return. Even that young girl who doesn't give him the time of day. He loves her anyway. He loves people in a way that catches their breath, whenever he smiles up at them.

Forgiveness. He forgives monster mommy, crabby and naughty sister, and frustrated daddy every time. It's like the slate is wiped clean when we mess up and act selfishly, only to be hugged and called "best friend" when we play Lego's, cook with him, or read stories.

Joy. Pure joy. The kind I have to talk myself into most of the time. He just is. Joy over a new toy car. Over watching How to Train your Dragon, for the 50th time. Or over going to Perkins for pancakes. He is 95 pounds of sheer joy that I catch every day as he runs into my arms when I pick him up from school. He has been doing that since he was 3. My other two barely say hello, but he still acts like it's been days since we last saw each other. I love it, but I wonder how I am going to catch a 17 year old one day, or how long I can do this before we both fall over.

Acceptance. He doesn't judge anyone. And he never complains, even when he has a perfectly understandable reason to.

Persistence. It's what kept him trying to walk - for three years. It's what kept him trying to be potty trained - for 12 years. It's what kept him learning to read, trying to type, figuring out how to do a zipper, put toothpaste on the toothbrush, and unbutton all by himself. He is still persisting to talk too. Even when I want to give up - he doesn't. Even if we are running late, and he wants to put on his own coat and zip it himself. It is more important in that moment - to be late. Now some people think this is synonymous with stubborn. I think the only time he has ever been called stubborn has been when an adult wants him to do something he doesn't want to. It's inconvenient for them. Every milestone he has ever hit, was because he is persistent.

Survival. There are many people faced with medical, emotional, and other major difficulties that come with having Down syndrome. And they are amazing survivors. Anthony has been through so much, but it never takes him out. He is a very tough little guy.

All these beautiful things come with that extra chromosome, among many others I am sure.

What I never expected though, what really snuck up on me, was just how much he would change me. I have been so challenged in my feelings about my own innocence and remaining child-like. My understanding of true unconditional love, my ability to forgive, my ability to be joyful in every day and every situation and circumstance. My conviction to stay persistent and reach my own goals, and my willingness to see myself as a survivor of things that I often resort to feeling like a victim to.

My son has taught me that without that extra chromosome - I am missing out on what's truly important in life. The stuff that really matters. Love, joy, acceptance, and forgiveness. It's through these things that I am a better person. It is through him that I have learned them.

I would have never guessed the impact of that little chromosome on me. I thank God for this little guy. In the beginning, so many people said "God won't give you more than you can handle". It used to drive me crazy. Because I was SURE I couldn't handle this. But now, I see. I NEEDED this. I needed him. Life is not what I had imagined, it's better. Now I get it. And I am glad I did.

One more thing - I am pretty sure that chromosome came with dimples, freckles and wings too.

Another Magical Moment

I started this blog to inform family and friends all of our "goings-on" with Anthony a few years ago. I used to send these huge emails to "update". He always has something going on. Then one day I thought - maybe not everyone wants to know. Then began, the blog. Where you read if you want, or not. Your choice. Then I thought of the name. Because at our house, there are soooo many moments, with all of my kids, that make some great stories - so I put them here.

This is another one of those times.

As I sit here with my eyes glistening with tears, and my heart so full I can actually feel it swelling through to the limits of my entire chest, I feel such a sense of peace and hope I can hardly grasp it. Tonight, there was a moment I never want to forget. One that came and went in a span of just a few minutes, but will resonate with me forever.

Like this one - where I took Anthony on his first Merry-Go-Round. He held on tight to my neck, his little hand clutched in my hair through most of the ride. But he loved it. And so did I. The wind rushed against our faces and we flew instead of just rode that horse. I was a regular mom here. Just a mom taking her son on a horsey-ride. It never occurred to us in this moment that we were "different".

This is one of my absolute favorites too. This was on his first birthday. We were just a mom and her first child. Spending way too much money on fancy photographs, because he was our first. And I love that we did. Because this day- I felt beautiful, motherly, and loved. All the dreams and hopes I thought weren't mine to hold, because we were different, on this day -I did. That day I held them all in my arms, because that boy was, and always will be, my son. First.

And these little faces, caught by my photographer friend for a local Down syndrome support group's marketing, are of my son. Precious as always, but chosen for his "difference" to educate and create awareness. He has changed so much since these. I thank God that I have them so that I can remember that young little baby face.

Seriously - is he not THE cutest???

And then there are times like tonight. Times where because he is different, they are that much more special.

Most of you know he has a pretty serious verbal disorder, that is separate from his Down syndrome, that makes communication, understanding him, and essentially relationships with him, very difficult.

One thing they don't tell you, is that on that extra chromosome, are these little opportunities for miracles. Very big miracles.

The ones others easily take for granted, but for us, are glimpses into heaven.

Maybe you have a child you could just hand a pacifier. Ours was Bella. You just put it in, and off she went with it. However, when Anthony finally used a pacifier - we celebrated. He was in the NICU for 2 weeks at this point, and when he accomplished this task, we knew he was just that much closer to coming home. It was a big deal. We went out for dinner!

It was a very big deal when he finally nursed, after 4 months.

Another big deal when he walked, after 3 years.

When he said "Papa", his first word, at 3 1/2.

When he walked up those stairs - and alternated his feet! At five.

When he rode a bike at 10.

When he was Potty Trained!!!!!!!!! At 12. (See previous post).

The thing about him, and so many of us, is that when he has to work that hard for things - it is a mountain, not a milestone. It is bigger than a developmental step. It is a LEAP! And like us, after difficulty, we treasure the moment we are free from it.

I treasure this moment like all of the above added together.

Tonight - I had a great conversation with him.

Did you see that?

A CONVERSATION.

The only thing left on my "checklist" is his speech. I have always had this list. I'm sure you have one too. The "everything will be better when..." list.

The one I have had for him had walking, potty training, alphabet, reading, riding a bike, etc...

Speech has always been on it. But I have been very reserved on that one. Not wanting to be "disappointed" if it never came, I have left it there with hesitated hope.

I have even been afraid to pray about it, because what if it doesn't come? What if the answer is no?

But then, I let go of all of that and am now in the firm standing that, with or without "words", my relationship with him will not be based on that. That I need to be happy now, not "when..."

And lo and behold, once I let go, I got what I wanted.

Or maybe I just let go of what I was expecting, and really just began to enjoy what I already had.

I already have a relationship with him where I can understand him. Where I do know what he wants. And we can talk to each other and grow closer everyday. It's hard, but it IS there.

Tonight, we had a back and forth interaction about his birthday. I wish you could have SEEN the attempts at him saying June 9th. That he wanted to go bowling, and all the friends he wanted to invite. We even made a list. With every word he lit up in his face. With every name, I knew who he was talking about. With every sound, there was an effort like never before. He and I talked about his birthday. We were a regular mom and son discussing birthday wishes and celebrations for his next birthday. Yes, it is a ways off, but that's the fun "typical" part of it too. We even referenced his age - 13!

But this was no "regular" conversation. Because we ARE different. This was one of those moments of magic. This was an extra chromosome miracle that only we get to have. This was a mom, connecting to her child. This was everything I keep dreaming of. And right here, right now - I am in the presence of it, and him, and the wonder of it all.

Yes, I will continue to drag him to speech, practice it everyday, and even more... I will continue to pray. I want everyone who comes into his life to have connections like these with him. I want you to feel the power of relating to someone that has so much to give. I want you to feel this blessed. I want to share him with you.

Another really cool effect from working this hard - ohh, it is such a sweet thing - is the realization that after all the hard work and time and energy - it was worth every ounce of it.

Because you find yourself, living in a moment of greatness, being a witness to something miraculous, because you know how hard this is, and how long it has taken -and then just when you think you can't take another moment because it is that overwhelming -

He writes "mom" on the invitation list.