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!

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.

Goodbye - You drove me Crazy.

I had a secret stash in my closet.

"Just in case".

But Now-I can Officially Say Goodbye.

I can let them go.

I can let my reliance on them fly out the window.

I can be free of them.

I never thought the day would come.

I thought it would never end.

I used to go crazy about it.

Worrying, making charts, buying rewards, worrying, giving candy, giving bribes -

Worrying.

But I can say it now.

GOODBYE PULL-UPS!!!!!!

Anthony is officially potty trained. He has been for a while. But I have kept these things , just in case, as if I was imagining it and one day I would wake up and we would still need them. But here we are.

We have been working with Anthony since he was 2 years old on this. He always went, every day, on the toilet. But he wasn't ready to do it on his own yet. We knew it would take a long time. "They" told us it would. But at 4, 5, 6 and 7 we really didn't think it would ever happen. It was so stressful. People were always giving us tips, helpful advice and tricks. And we used every single one of them. Charts - only I was trained on that. Stickers - he hated because they always give those out at the doctor, and he hates the doctor. Candy - he only liked sometimes. Matchbox cars - he has at least 30 from those efforts. We tried just putting him in the underwear so he could "feel" being wet. He has sensory issues - except when it came to that. He didn't really care. I even bought him a doll he could teach. (When is someone going to invent a car that needs to go potty - maybe that would have done it?)

I had a family member ask me how long it could take. I told her "as late as 8". (Yes, I had researched it.) He was 7 at the time and she responded with her own sigh of relief - "Oh good, you only have a year left." I watched other kids get potty trained that were born after him - before he was even close. Even Bella and Emma beat him.

I knew someone who said her son was trained in one day.

I had become exasperated.

Really though - WHAT IS IT about us as mothers that makes us think it's all our fault if they aren't trained by a certain age? There is another person I know who took off work to potty train her child in a 2-day training method? Really? I felt like such an inept mother. One day while crying to my dear friend Erin - she said something that I will never forget, I tell everyone I meet, and changed my whole perspective.

I was complaining that some other child was potty trained in one day, and that we had been working on it for 5 and a half years now, with no end in sight. In her special way of calmness and peace that she carries with her, she said - "He'll be potty trained in one day too. ONE DAY - HE will be potty trained."

Now that was the brick in the head this momma needed. I stopped worrying, I stayed consistent, I let him do what he could, when he could, and I respected him. And 5 years later - my one day came. Or rather, HIS one day came. And He is potty trained. And now, after it's all said and done, I realized that what we all hear while we are trying to potty train our kids - but don't understand until they're done - is that THEY DO do it themselves on their timeline, under their understanding, and with their determination. They potty train themselves, we have hardly a thing to do about it but keep consistent, patiently wait, and realize this is not about us.

I love that his one day finally came for him, that he can finally be free of pull-ups, that I can carry a purse. Yes, he will be 13 this summer, but he really did it by age 12. I don't even have to remind him anymore. It took us 10 years. But we got here. I just didn't want to jinx anything by posting too soon about it. But this post, however weird to some readers, is one of the most exciting ones. I love how when I hear the toilet flush, my heart feels fuller and I just rejoice in the moment. He's the only kid who can make me do that with that sound.

And who cares that by the time I got to proudly buy "big boy underwear", I also had to pick up deodorant and acne cream. In the end, freedom - is a very sweet reward.

Counting the Blessings

I couldn't have planned a better week of vacation.

In fact, I didn't really even plan this one.



About 18 months ago I heard about this camp. Totally forgot about it, and then was reminded of it at the gym one day while watching a re-run of Extreme Home Makeover - where they were remodeling the home of this couple and some of the camp buildings of Camp Barnabas. This couple started a camp for kids with special needs to get the "camp experience", with the added twist of being treated with a kind of love you just don't see enough of. This place is based on the premise that different is normal, and normal is different. I remembered that this place let siblings go too, so when I got home I called.



I count blessing #1 - the info, #2 - the airing of an old episode I can't even find on you tube to show Shaun, and #3 - the off chance that I was at the gym to see it.



Blessing #4 came when I realized that this place books up a year in advance and we were only six months out for one of the 2 most popular weeks of the entire camp summer - when siblings are welcome too. AND we got the last 2 spots!!



Blessing #5 was the fact that we also received a partial scholarship so that they could attend, as we were trying to sell the house at the time.



Blessing #6 was that everyone was well enough to go, especially since Bella got sick just 3 days before we left.



Blessing #7 was Shaun getting all the time off from work. Maybe that is more like 3 blessings.



Blessing #10 was a free hotel from a friend for one night.



Blessing # 11 was Shaun's bonus check that finally came in days before we left.



Blessing #12 was the free stay at a condo in Lutsen, MN from a guy Shaun knows. This is the only reason we would make the trip from Missouri to Lutsen and back. (It really was more cost efffective.)

There really are too many blessings to count. This list goes on and on. And we all had such an amazing time.

Emma's trip could be referred to as The Catch of the Day. Each day she caught some great times. She caught a movie, she caught fish, she caught frogs and minnows, she caught a ride on a tube behind a jet ski, she caught a nap here and there, she caught a ride in grandpa's semi truck, she had to catch her breath after Uncle Chad took her on a huge scooter ride to a park where they played and caught a game of kickball - and then scootered all the way back. And she scored an ice cream cone for lunch with grandpa. She had a great time, but was more than thrilled to be back with her family and as it turns out - having a brother and sister is pretty great!

Bella had a fabulous time. After we got Anthony settled, we went to see her at her cabin and she was already moving in. She was so excited. Although I heard more about the animals at the petting zoo, the horses she rode and the dogs that lived there than any names of other girls, she still talked more than I have ever heard her go on. She made some friends and can't wait for her sister to come next year because they might be in the same cabin. She had a great first experience and is very excited to go back.

Anthony's trip was more amazing than I could find words for. He really did NOT want to be there at all. We tried everything, books, pictures, encouragement, our own excitement - nothing worked. While waiting in line, he hid his face in his pillow when the camp people came to give us information and get our campers names. Yet, these people just kept telling Anthony how happy they were that he was there and how they couldn't wait for him to have so much fun. No one seemed at all thrown by his obvious discontenment.

As we pulled in to the drop off, the volunteers were all yelling and cheering on each camper as they arrived, like 200 of them. I got panicked as I heard them from 4 cars back, because I knew that would push Anthony over the edge. But instead, as we pulled in, the entire crowd was down to barely a whisper and were doing the sign language applause (waving of the hands in the air). Somewhere I must have written down his fear of loud noises. The tears started there - I was in awe.

It was SUCH a nice gesture and thought - but it didn't help him at all.

As his CIA approached, a 16 year old from Denver, Colorado - Chase, and one of his cabin counselors, Eric came to get him - he absolutely was NOT going with them. I offered to help. This part sucked!
I had to pull him out of the car and push him screaming and crying up the hill to his cabin as Shaun drove off to park the car and register the kids. It was 95 degrees out and this little guy isn't so little at 90 pounds of sheer terror. I got him in and talked with him and Chase and gave him more "hints" and ideas for helping Anthony.

As "goodbye time" drew near, I had all I could do to keep it together. But when this young man looked at me, with tears in his own eyes and all the sincerity in the world and said "I want you to know, I prayed for this, and I really wanted to be with your son. I can't wait to spend time with him." I was done for. So while I did all I could to fight the tears, Shaun took the time to say goodbye to Anthony. Then I was up.

At first he didn't hug back, but then he hung on for dear life. Arms tight around my neck, I asked him if he was sad. He said yes, so I told him that I would be the sad girl and he could be the happy boy, and then he looked at me and smiled. One I won't soon forget. I told him to show Chase that smile and he did. Then I could go. He asked to go home with me and dad and I assured him he would on Thursday. We did that twice and then we parted. As I walked out the door, I turned and looked back to see him talking with Chase, and the cabin mom and he seemed ok. So I got out the door - and lost it completely. I hoped in every way that I really took all his sadness, I know I didn't, but at the time it sure hurt like maybe, just maybe, I did.

I found dear Emily next. The one who comforted me prior to coming there. Apparently I am not the only mom full of concern, as she soon added me to the "mommy check-in list". They check the kids at lunch and then give the report to all the moms who call in after 2. Did I tell you how awesome this place was?

But I am a very impatient, over protective mother. So at 9:00, I called. And hoped Emily didn't answer. I got Lindsay, who said that she was standing right next to Eric, one of the cabin counselors who was then put on the phone. He answered the phone - Hello, Mrs. Hinson. Loved that. He went on to tell me Anthony was playing tag and laughing just a few minutes before I had called. I cried while trying to thank him and wished him a good night, then he says "have a blessed week." Seriously, I couldn't get over all these kind people. I told Shaun - I want to go to Camp Barnabas.

Anthony did have fun, and after a few more "mommy check-ins" I learned that while getting ready for bed, he signed "I love you" to Chase. After that, I knew all was well. And for the first time on our trip, I didn't cry before falling asleep that night.

Pick up was the best. Anthony ran to us and hugged us so tight, I swear he lifted us both up. He was so excited after running to hug me, then running to hug Shaun, that he just ran over to this random woman behind Shaun and hugged her too. Then he realized he didn't know her and ran over to us and we all hugged again. He and Chase showed us their little hand jive thing they had going and they hugged too. Chase, whose time at camp was also his first, thanked us for Anthony being there, how he changed his life and even wanted to request to be together again next year. After that drop off, I was suprised Anthony didn't have a different CIA when we came back.

I was so stunned by this place, and this young man. This has been the most amazing thing I have ever seen for Anthony. One place where over 200 people were so thrilled he was there and so happy to meet him. Like he was this gift, just for them.

It hit me like a ton of bricks.
I haven't stopped crying since.
If you call me to ask more about it, you'll get a crackling voice.

There isn't a place, anywhere, like that for my son. This world is made up of more people scared and uncomfortable around him than those who actually care and reach out to him, no matter what. But for one week, he was the kid everyone wanted to be with, the kid to get to know and play with. For one week he was "normal". This place wanted him there, and they showed such a love to him that little miss wordy here can't even begin to explain it. It was such a great glimpse into a world full of acceptance that I had never seen. A world like that, on a daily basis, full of that sincere of love, was the most powerful thing I ever experienced, and I am not the same person I was. It was more than inspiring. What a different place this world could be!! Knowing that there are 200+ 14 to 18 year olds out there with that kind of love in them, sure gave me a hope like no other.

And Anthony? He says he'll go back, that Chase is his buddy, and he even acts more like... a guy. I can tell he's been hanging with "the guys" for a week. It's truly taking my breath away. It was so cool to see him high 5 all these guys as we were leaving, the hugs, the "later dude"s. I had no idea that this would turn out the way it did. I half-expected them to call me to come back to get him. I never expected to be so touched and affected.

There were really just too many blessings to count.

I have to go tend to my little "gifts" now. So I'll blog about me and Shaun on the next one.

Prayer Request PLEASE

For these two cuties - May they have a great time at camp!!

I am sure Bella will.

Anthony, on the other hand, that is another story.
We've been talking with Anthony about the camp, and he absolutely does NOT want to go. Every time I bring it up, he gets mad and says "no camp".



I keep trying to convince him he will have fun. We went shopping for things together, we've been packing together, Bella is putting on her best cheer and so am I, and he has done great for those things. Dad came home last night and Anthony was STILL awake. But he was SOO happy to see him, I used it to my advantage to encourage Anthony to tell Dad about the camp. He actually seemed more than happy about it while telling Dad. And dad did an awesome job acting really excited and happy for Anthony as if he was hearing all of it for the first time.



We went online and looked at pictures of the camp, the things they can do, and even watched some videos on You Tube of the events and things they do there.



With each one... "no camp!!"



I am fearful again.



What if he shuts down the whole time?

What if he just sits on the side and watches and refuses to interact the whole time?

Will he be able to do the activities after a day or two?

Will he cry?

Will he try to leave?



None of these are unfounded, he's done them all before with other things. And this thing is just so big.



Oh, did I make a mistake doing this??



I have this awful vision of them having to hold him while I "escape".

I am scared that he will be so anxious and full of fear and that he will not really understand what is going on.



And I will have to be so strong.

Because if I let one tear well up, he'll think something is bad and then he really won't stay.

I can't cry.

God help me on that one. I have to just make it to the car.



So, if you're the praying kind, please pray for strength and understanding for him. For peace and calmness too. I don't mind if he doesn't participate in everything. I just want him to relax and not be full of fear for a week.



And if Shaun and I are going to be able to relax at all, we can't have the tearful, 'don't go mom and dad' scene. Please God, please, wrap your arms around Anthony, put him with a patient and understanding CIA, and please, please, please - let him have fun.



I am working on a picture book for him that I hope to finish tonight of the things they will do, to prepare him, a countdown for him of when we will come back for him, and photos of the family in case he misses us.



I so hope it is enough. If anyone reading this has any other ideas, please let me know. Otherwise, please pray a little something for Anthony.



If he doesn't have a blast, I am okay with that. I just really, really don't want him to hate it.

Thanks! D

The Key Is...

As a parent, we all have "tricks" up our sleeves.
I think that over the years, Shaun and I have learned that tricks won't get it done.
You need the "key".

Yesterday, we took the kids to see a movie. Anthony's first movie in the theater was "Cars". That was 3 or 4 years ago. I know it came out on his birthday, but I can't remember which year. The tricks we used then was to bring Grandma and Papa and load up on pop and candy, all of which were a special treat back then, (living in Iowa). I tried again later for a birthday party, used the trick of popcorn and pop, we went into the theater and he couldn't do it. He hung on to me for dear life. He was so scared, we gave away our treats to the birthday boy and had to leave. We now know, the tricks aren't what did it. The "key" was to get there before they turn out the lights and start up the noise. Yesterday we went to "Toy Story 3", which we all loved. Bought root beer and fruit snacks, just in case. But he was fine. We got there, he was scared, but he went in and sat next to his "silly buddy boy" (he and dad's little name for each other). And he did great. He didn't even drink the pop or eat the snacks until we were in the car on the way home. He sat and waited through all the previews, (wow like 25 minutes) and when the lights went down, I half expected him to bolt, but he got excited and was ready to see Buzz and Woody light up the screen.

We have lots of others too.

The "key" to get him to focus on what you want him to do, is to make sure he knows you understand him and his wants first.

The "key" to keep him relaxed and calm is exercise.

The "key" to get him through a doctor appointment that involves a shot, is to let him know that it's coming, but he can choose to sit on mama's lap instead of having all the "helpers" ( about 5 nurses now) hold him down. Another "key" is to remind him that we can go to a restaraunt after he makes it through. (ok, so maybe that's just a plain bribe.)

The "key" to getting him through his frustrations, is to pull him aside, and let him "talk it out". (Not that we understand much of it, but once he's aired it out, he breathes better, wants to be held, and sometimes will cry, but then is fine again.)

The "key" to making him light up is to include him in cooking, he LOVES to grill, any "job" he can show his ability to be responsible. He even loves to do laundry.

Even the girls have the "key" of cheering him on to a new experience with their own "dramatic" excitement, that he tries a lot more things that Shaun and I could ever get him to do on our own.

Sometimes with all the "extra" things we do with and for him, it feels like we must carry a keychain resembling a set of janitor keys. Too many to count.

But like most of us, sometimes we can't find our keys. We look and look and look, but we just can't find them.

Tonight, like each and every day, I searched for the "key" to communicating with him. There are so many times where I feel like we are cracking the code on this, but then nights like tonight happen and remind me how far away we are from the "key".

He spent, bless his heart, 20 minutes trying to finger spell and say the words he wanted me to know. So signing and talking weren't doing it, so I went for this computer thing he has.

Honestly, I hate the thing. It's heavy, cost $3000.00 (so I'm too scared to take it anywhere) and is so complicated that I just don't see the practicality of it. His therapist thinks this will be soo very helpful for him, but I am so full of skepticism on it. He doesn't really even like it. But maybe because I don't encourage the function of it for him, he doesn't see it's benefits either.

So I go get the thing and he taps the onscreen buttons to say "I want to write". So I go get him a pen and paper. When he was finger spelling, he was doing it phonetically, which seriously cracks me up everytime b/c it's so cute, and he kept spelling "r,a,e,d" and "r, a, i, i,". So he gets his pen and paper and writes, with help from things in his room. "Road" "Anthony and mom". Then he uses the computer to get the word "lego", signs "build" and points out the "trailer" for the fire truck for us to do together.

It took over 40 minutes by the time we got it figured out through the use of sign language, pen and paper, a computer, and pictures in his room to tell me he wants to build the trailer to his legos fire truck with me tomorrow.

He is 12 now, and when it comes to getting to really know and understand our son, we still have just our tricks, and dammit, I would give anything to find the "key."

Yet for now though, the tricks work. And I cherish them. Because between all of these, he still manages to make me laugh, melt my heart, and he really does shine past that "lock" that keeps him inside.

Singing a New Song

Whew, a bullet is dodged.

Anthony had an echocardiogram today. Since last month we did an EKG and the blood draws, they did not need to be repeated. So he only needed to do an echo besides the physical exam today. Although he signed that he was scared the entire time since we left the house, he made it through. Didn't hurt that there were no shots, and that he got to watch a movie during the echo.

They got great pictures and all showed to be normal and healthy!!!!!!

The great things to come out of it:
1. We ruled out any heart problems.
2. We have a baseline record for any future concerns to compare it to.
3. There were no signs of cardiomyopathy.
4. There is nothing to indicate that he will have any onset of congenital heart conditions commonly associated with Down syndrome, ever.

5. We probably racked up enough to close out our family deductable, and can now get any surgery we think we might need for "free". Shaun's back or hip, my knees... wonder if laser eye surgery could be considered. Just kidding.

Anyway, the bummer is that we still aren't sure what is causing these episodes, so we are back to the drawing board. Funny thing about figuring out what's wrong - I didn't want it to be his heart, but knowing the problem to be able to fix it is still the goal, and now not knowing is a little frustrating. But again, it's not his heart.

When his doctor told me on Monday that this was the next step, I said that I would have rather she told me he needed more snacks. Ironically, I think we are back to that. this keeps happening at gym class, 4 hours after breakfast, and probably any drink. So I am sending a water bottle and we'll see if that works. It has never happened here, so I can't say what the surrounding circumstances are, so we'll see.

I guess I'll have to hit the internet, see what other parents have experienced.

As for today, the scary stuff is over, and we have "broke on through to the other side" (see previous post from this morning).

So, our new song is...
"If you're happy and you know it...CLAP YOUR HANDS!!!!!"

Thanks everyone for all the prayers!! Powerful stuff!!

The Word of the Day

Every day, Anthony has a "word of the day". He shares with his class the word, the defintion, and a picture to illustrate the word.

Today's word, at our house is Trust.

The defiintion is "firm reliance on the integrity, ability, or character of a person or thing".

Here is my illustration. Proof that I have had to "trust", many times before the integrity and ability of many doctors, teachers and whoever else. But mostly in God.
On Monday I cried at what we have to do today, and yesterday I was calm. Resolving that everything will be okay.

But today, I woke up and the war within began.

Today, we take Anthony to the St. Paul Heart Clinic to have a "cardio workup" done. We know an EKG will be done, blood tests and an echo-cardiogram. What else? Not sure. It is just the next step we are being told to do. He passed out at school, for the second time in a month, and protocol dictates that we get his heart checked out. So today, we go.

The war within me raged once my alarm went off, and I woke up, and I realized what I have to do today. I began with awful negative thoughts, wondering what might happen, conjuring up worse case scenarios, (WHY do I do that to myself??) I can jump the gun so fast. Too fast.

And then I fought myself with the positives. It is still, right now, just another doctor appt. Yes, many things lead to a possible condition. The passing out, the fact that heart issues run in the family, and the most obvious - he has Down syndrome. This kind of thing sort of comes with the job. But right now, it is just another appoinment. We don't know anything, we don't have to be scared in this. (I am winning this war. And it feels awesome.)

I resolved yesterday that one of two things will happen today.

1. They will rule it out.

2. They will find something, and they will need to fix it.

So I trust.

I have to.

I have to trust that the doctors in one of top clinics in the country will take care of my son.

I have to trust that they will get a closer to an explanation.

I have to trust that, just like many times before, we will stand strong when it is all said and done.

I also have to trust, so that my son, who will be very scared today, can look to me and Shaun, our faith, and trust...us.

Today, there is a song. Well, part of the song. Because I don't know the whole thing and I really only need the one part anyway, and it is playing over and over in my head.

I love that God can speak to us anyway He wants to.

Today He is using The Doors.

"Break on through to the other side. Break on through. Break on through. Break on through to the other side."

I have been through a lot, so has Shaun, so has Anthony, and so have many others. But on the other side we can see what God saw all along. The way it was all meant to be. The way things can all fall together, like someone had it all planned out. (Because someone does). The way that when, on the other side of it, you see that you weren't alone, even if you felt like it.

Just like a friend of mine said. I can trust that He will be there, because I can look back and see that He always has been.

So today, I will trust.

And we will "break through to other side".

My Gambling Problem

This is my baby.

One of my all-time favorite pictures of us.

He changes my life, everyday.

I have a dream.

To one day write a book.

Well, actually, publish a book.

I get a few ideas here and there. I really hope to do it one day.

For the fun of it, I'll share an idea I had today.

If I were to write a book that would include the following story, it would be entitled...

"My Life as a Poker Mom - Dealing with the Cards."

(Or something like that.)

A few months ago I shared our story of Anthony's upcoming surgery. Which was scheduled for Monday. After the news, I resolved to quit my housecleaning job, make a "recovery - friendly" home (since we just moved), prepare for childcare and get ready for a week in the hospital and 8 weeks with him in a cast and a year of therapy. And so we set out.

But, "just in case", we scheduled an appointment for a second opinion, as this surgery and recovery is very serious. Many encouraged this. I wondered.

I wondered... why go through a second appointment to hear the same news.

Or worse... what if they say NOT to do the surgery.

We went through major tests, x-rays and measurements. This surgeon never wanted to do any surgery until after those tests were done. I figured they proved serious enough to change his mind and it was a done deal.

But... against my better judgement, I rolled the dice and made the 2nd appointment.

I mean... what are the odds that his co-worker would disagree with him?

Pretty high I guess.

Not only did he think that Anthony didn't need the surgery, but that if he did, he would choose a totally different one.

What kind of "hand" is this?

Do we roll the dice again on a third opinion?

And do what, break the tie? No thanks.

I'm in a big enough tailspin.

This is my kid.

One doctor says it will affect the severity of his future arthritis (which is a given anyway).

One doctor says his hip won't actually pop out, unless he falls really hard.

One doctor says that he could just be used to the pain he is in and can't tell us about it.

One doctor thinks if we do it now, he will heal faster, another says one leg could grow longer than the other if we do it now.

And sooo many other things, no need to repeat them all.

I don't know WHO I would lay my money on. (If I had any.)

But this is my kid.

So we now have 4 doctors involved, his pediatrician and DS specialist got copies of the reports and are waging in too.

Since the stakes are so high and no one can place a sure bet here, we have decided to postpone the surgery, if at all, or if even the same one, until the fall.

We need to monitor him much more and make more accurate observations for how it affects his daily function, before we can be sure that this surgery is right for him ... or not.

So we wait, and watch,

and pick up the cards we are dealt.

And we try to gamble on how this leg will affect a future none of us can predict.

I am reminded of a song I used to sing when I was a little girl

in the backseat of the car along with my parents...

I will need to "know when hold 'em, and know when to fold 'em.

Know when to walk away, know when to run".

I have a gambling problem.

First of all, I don't play, I can't keep track of all the rules and I am in over my head.

(Can't you tell, I am making references to cards AND dice.

- Much like my parenting - I have no idea what I am doing.)

I want to "know", that if we put Anthony through this, he will get the big payout.

I want a sure thing.

Do we "walk away"?

I want to "run".

This is my baby.

How does any parent actually choose this?

And so begins the "shuffle".

Anybody know where I can find the rule book?

God Called - But I am pretty sure he dialed the wrong number.

You know all those wonderful "comforting" thoughts in hard times. They are supposed to give you a happier perspective, calm you, remind of good days to come.

I need some different ones.

Instead of "thing can't get any worse" - I want to say "things have to get better".
Because everytime things can't get any worse - they do.

So now, after the last few weeks, they HAVE to get better.

Don't say, "God won't give you more than you can handle". Because God doesn't even give it out. Life, satan, karma, whatever you want to call it, is dishing out too much for me.

Murphy, of Murphy's law, isn't just a guest in our home - he moved in, brought his family and are partying in the basement. And I have violent urges to shoot him.

First, we are involved in selling our home and STILL looking for somewhere to live. We hope to close on March 15th, so we need a rental by March 1st. Yes, I am aware how close that is. And I am freaking out, and haven't packed a thing. Murphy's sister, Denial, is always hanging out in my kitchen. She dishes me up ice cream when the house is quiet and I am alone and scared. She even adds chocolate chips on the top. She is making me fat. I hate her.

Second, we got our new insurance. AND IT SUCKS. Our family deductable is so high, we might as well not have any. I will need to keep working just to pay the medical bills. And we will have many. Murphy's brother "Ripyaoff" is taking all our money.

Third, the plan was for me to go to school, get a teaching job, so Shaun could eventually be a 9-5, mon-fri guy. A family. All we wanted was a family life. But with adding school, and the cost, Murphy's cousin, Fear, has me sitting on my computer, frozen, and waiting for something magical to happen.

Fourth and finally - after all this - nothing could have prepared us for the news we got last week. This made losing a job, a house, shitty insurance, and no where to live in 3 weeks nothing to fret over.

I am asking for prayers, lots of them.
Anthony will have surgery in April.
A birth defect was found after extensive testing. How this is just now being figured out is beyond me. Well, I kind of have any idea. Every thing we noticed was just explained away with his "Down syndrome", or his "low muscle tone". Or some other common thought in the DS world. But this one wasn't. His tibia, the shinbone, was twisted and all the "he'll grow out of it's" won't work now. His twisted bone is turning his foot inward, and he is compensating by turning his hip outward. To a degree that he shouldn't be. The "silver lining" I guess, is that they only are doing the tibia and not both the hip and the tibia. For now.
This April they will cut the bone and put in pins and a steel plate. He will be in the hospital for 5-6 days, a wheelchair for the first weeks with one kind of cast, and another kind of cast for the next 3 weeks, but walking. Extensive physical therapy for the next year, close follow-up, x-rays 6 months later, and then next April, another surgery to take our the steel plate and pins, and if all is well with the hip, we should be done. If not, I suppose that will be next.

This little boy, who I never thought would grow out of his rear-facing carseat is now 84 pounds. I think this news was brought to us by Murphy's in-laws - Grief, Terror, Stress, and Devastation.

So life can give you more than you can handle, and that which doesn't kill you only makes you stronger as long - as you don't kill yourself.

God has called me to this life - seriously? I think he got the wrong number.

Iknow, "it will all work out in the end", as long as the end isn't a two-parent, two- income, monday through friday couple who gets time to date, save money for a vacation and enjoy watching their children grow up in a home where you can keep track of their growing years on the wall because it's theirs to write on. Cause, I don't think that one's going to be our end.

A girl can dream, and pray though, can't she?
So keep us in your prayers.

But hey, we'll hit that deductable now.
It can only get better - right?

Will these ever go well?

I have a full-time job with my little guy.

I came home today to a packet to fill out for Anthony's appointment next month. We are going to the Gait Lab in St. Paul and apparently they would like to see if their already 6-inch file on him can fit just a little bit more. I have 15 pages to fill out. That shouldn't take long, I have nothing else to do, right? Ugh.

And then I had to take him in for a "well-child" visit. Well, my child's visit wasn't very fun.

I was about 4 months over due for it, and it showed. He has grown so much. Over the past year he has put on close to 10 lbs. and almost 4 inches. ?????? What????? Whoa!!!!!

He has also hit puberty. This is interesting territory for this mom. Barely moving out of potty training and right into needing to have the girls wait in the lobby so he can have privacy for his appointment. I couldn't believe I was discussing acne, shaving and deorderant. I just ordered him underwear for Christmas!!

He was quite a little man. Totally knew the drill. Went right to the scale, took off his shoes, got weighed, walked over to be measured, held out his arm for the blood pressure. Sometimes I wonder how this could be the same little boy who I held screaming for these things. Whose blood pressure was through the roof, if they got it, from all the stress. Now, he was like a pro. He even wanted to tell the doctor about himself and answer the questions she was asking me -- sooo precious. ( I translated as best as I could, he sure had a lot to tell her!)

He did all she asked of him so well, like a champ.

And then she reveals the bad news - he needs his blood drawn. UGGHHH!
I HATE these.
As she left the room, I reminded her - "bring your friends".

He totally thought he was done. He completely cooperated with everything she told him to do. He was ready to go.

And then they came. Four women, one with "the bucket". You know, the one with all the band-aids, test tubes, and alcohol swabs she could ever need. Who cares that she had on a stupid Santa Hat! Anthony saw that damn thing and bolted. This is NOT a dumb child! He knows that drill too, we both do - and it totally sucks.

He signed over and over - "scared, scared". But we had to do it anyway.

Now I will remind you - he is 4 feet 4 inches and 83 lbs.

We got him on the table and 4 of us held him down while Santa hat lady stuck him. (Curious side note - the fuzz on her hat was black, not white. It was like the grim reaper santa hat - what the hell is that?)

Anyway, she stuck him and then my little contortionist moved. Shit! The needle came out. And we had to do the other arm.
I hate when we have to do it twice.

Here's the funniest part - if there is such a thing. They said he had great veins. They ACTUALLY said that. This child has been told since birth that he has terrible veins. They roll, they're too tiny, they can't find them (that was my favorite - like he didn't have them or something.) But here they were actually telling me he had wonderful veins. They even used that word - wonderful. I'm not positive, but I am pretty sure I laughed out loud at that.

I also love how he can suprise those nurses. They all come in like they have all done this a million times (which I don't doubt), but they have this confident arrogance that "they got this kid's number". And he ALWAYS puts them in their place. The one nurse went on and on at how he did stuff with his arm she could have never prepared herself for, which is why the needle came out. I told them it was going to be very tough. When will they ever listen to me?

Finally he was done, they got enough blood and he was done. He hugged the nurse, and the doctor when he was done. I loved that. There's quite the forgiving heart, don't you think? Could you imagine hugging the people that stabbed you and the one who ordered it to be done? I think he was just so grateful they stopped.

I love this kid.


We have to do this every six months.

When he was a baby I couldn't even try to imagine the day he would ever be 40 lbs. Now he is twice that. And today I can't fathom the idea of a bunch of nurses and a mom holding down a 15 year old young man. Will this ever get easier?

Well, I guess that could be reason #238 to get myself in shape.

Do Angels get overtime?

This is one of my all-time favorite photos. So angelic.

This is me, my dad, and Anthony while he was still in the NICU.

Yep, a peanut.

He lived there for the first 3 weeks of his life. So tiny (4 lbs. 12 oz.).

I had no idea back then what life would be like for us. Now 11 years I look back at this photo with such a fullness in my heart. I still remember all too well how scared I was, how fearful we all were. The unknown is soo...dark.

The thing I love about this picture, actually there are quite a few things.

That's my dad. The coolest man in my life. He's been there for the whole thing. There isn't a moment I don't remember the amazing love of that man.

Also, that's my son, my first baby, the one who has changed me into the woman and mother I am.

But the thing I want you to take notice of with this post is that light.

The beaming light coming in over our shoulders and onto Anthony.

Before, as I looked at that light I used to think; "it's the only shot I got that shows you how bright the angels are that watch over our little guy."

Today, I am wondering if there might be more than one.

Why can't he just stay little like this?
It would be so much easier.


Fast forward now.

To why I am grateful that our children are blessed with guardian angels,
and why I am sure that Anthony has more than one.


See this shot - This is why "Fireproof" has a whole new meaning in our house.
This occurred last Fall after Anthony watched us start our first fire in our new fireplace.
He is so observant.

We began with crumpling the newspaper, laying on the kindling, and lighting the matches. Did I mention Anthony loves fire? So the next day while I went to get Emma from pre-school, and Shaun was home working and taking care of Anthony who was home from school that day, he got an "idea". I was tempted to call up his old cub scout leader to see if he just earned his fire badge. But he did it exactly right. The newspaper, the wood, the matches. Well, not exactly right - he started it on the floor instead of the fireplace. Shaun got that funny feeling that something was up with Anthony, you know, when it's "too" quiet. Halfway down the stairs to check on him, the fire alarm goes off. Shaun hits the basement with the alarm sounding, Anthony under the coffee table, and the fire blazing on the floor. After putting it out, shutting off the alarm and getting Anthony out from under the table to see if he's all right, he takes a moment to take stock of what just happened. As he looks around, he counts 22 lit matches. 22!!!!
And not a mark on Anthony. Anywhere.

Do you believe in Angels?

Not sure?
Let's try again.

Today Anthony had another "idea".

I wish I had a photo of this, but you'll just have to use your imagination. As I was making dinner, Anthony went out to play. Not super comfortable with that all the time, but figured he'd be okay for a bit. I didn't want to burn dinner, again. So then, I was dishing up everyone's plates and talking with the girls when I remembered he headed out there just a few moments ago. So I asked Bella to head outside to get him for dinner. She came back in a hurry, and with the all too familiar panic in her voice says "I can't find him anywhere". So with a sigh of "here we go again", we all 3 head out. Except when I get out there, I don't see him either. Now I am in a panic.
My head races- "do I run to the park, the neighbor's, how long do I look before I call the police..." . Apparently this panic looks familiar to the neighbor as well, as she hollers from across the street - "Are you looking for Anthony?"
I think to myself- "yes, the search won't be long." I reply back, "Yes-have you seen him?"

She says "Yes, he went that way, to the backyard."
"With the lawn mower".
"And it's running".

"WHAT?!!!"
Well, this is an introduction to a new kind of panic as I run off to the backyard and follow the "path" in the grass. Yep, there he is. "Mowing the lawn." I run like I never have (I'll have to use this as a visualization for my next 5K). Anyway, I scared him when I came up behind him and he looked up at me.
OHH, did I want to yell at him. He could have....I didn't even want to think about it.

But then I saw his face.

He was beaming!
He was sooooo proud of himself.
He did his hand gesture of "look what I did mom",
and then signs that he is a "big boy" and "just like dad".

I couldn't do it. I couldn't yell at him. I just was struck in my heart to only say,
"wow, Anthony. You did it all by your self!! You are a big boy to mow the lawn!"
I think he grew an inch right there.

I could have, as the total freaked out mom that I was,
crushed him down with what I could have said, what I wanted to say.
But instead, I calmly told him that he was awesome. And that next time he should let mom or dad watch him because it was a big job to see. And that now we will put it away and go eat dinner. He wasn't happy about that very much, but he did get to "park it".

And as we pushed it up the hill, I thanked God for those Angels of his.

Now I was sure he has two.
They gotta take shifts with this one.

And as we went inside,
I hid the key to the lawn mower.

Right next to the matches.

Small Heart Attack

That's what I had today.

My son, who gets overwhelmed at crowds sometimes, can leave the situation to escape his fears - most of the time.

However today, while I was picking up Emma from a Birthday Party, at the Mall of America in the American Girl Store, along with her little friend, Anthony decided to "leave" the situation. While I was having Emma use her "manners" - say goodbye politely, say thank you and happy birthday to the little girl - he left.

I lost him.

This happens way too much.

I prep him, let him know what's coming, what's expected and think I have it all under wraps, and then off he goes. When I am not looking.

Today was the first time I ever had to get help and have an employee ask for his description as she called a "Code Adam" over her walkie talkie. (Those are 2 words you never want to hear!!) The feeling that swept over me I can't even put into words. The fear, panic, frustration, where in the hell is he, and still keep track of the other three kids with me. I didn't know if I should go back the way we came down the stairs, or out into the mall from the upstairs. He likes the escalator, but maybe he just wanted out and stayed upstairs. God, I had no idea what to do!!Ugh.

Finally I see him out of the corner of my eye. He went out of the store completely and was waiting patiently at the door. He knew enough to stay near, just not by me. Three fricking minutes can feel like a lifetime. And poor Bella. We always split up and search. I pray every time I don't lose her while we are looking for him. And she gets just as scared as I do. She'll be gray before she's 20 at this rate.

I don't drink, but I today I feel like I need something.

Maybe some dogtags for the kid, and a flask for the purse?

Aaagghhhh!

Now I hate going to the doctor

So, today pretty much was nuts. Today's events were not typical for us, but not the first like it, and I am sure not the last.
Here are the cliffnotes, because it is too long for even me.

5:30 am - Woke up because Bella was so excited to take the dog we are caring for this week out for her morning walk. Bella! Dressed and ready at 5:30 AM!!

6:00 am - Checked emails, read 6, sent 2.

7:00 am - Got everyone ready for the day.

8:35 am - Had a disagreement with Shaun on my way out the door to an appointment with Anthony regarding our "tone" with each other. Still gotta fix that.

8:45 am - Went to Minnetonka to see Anthony's Down syndrome specialist with Anthony and left the girls and the dog home with dad.

9:15 am - Arrived for our 9:30 appointment, thought it would take an hour at the most because we didn't have any "issues", so I made my grocery list and menu plan in the waiting room.

During the appointment found out some "issues" I wasn't prepared for, to hear, or to deal with.

• Anthony gets blood draws every six months to check for different things common to DS. Thyroid, zinc levels, IGA antibodies (for celiac disease) and other common things. Turns out his IGA levels are low and need to be closely monitored. Unfortunately, he may have a false reading so now we have to keep testing, and watch for symptoms of Celiac in order to warrant the conclusive results through an endoscopy.
• Anthony's speech concerns are heightened with his lack of social interaction and intense frustration levels and we are increasing speech therapy 2 times a week. I now need to check with insurance to cover a fancy computer that helps him communicate with others. The signing just isn't cutting it anymore. I also need to go to speech too, to be trained on how to use this thing on a day to day basis and attend a parent workshop for it. I just hope that the "cool toy" he thinks it is now, he actually uses to help himself and his connections to others.
• Because of his communication barriers and intense frustration levels, we are getting connected to an in-home behavior therapist that I need to meet with, fill out forms for, and schedule to make weekly visits to my home.
• On top of it we might need to look at "medications" for his aggitaion and irritability issues, like anti-depressents or ADHD stuff.
• Since we need to do all this, we "really should" get a county social worker - which is code for get it done before our next visit because I will be checking. FYI- The paperwork for this person to "help" our family is why I don't have time to write a real book. They want all his evaluations, his school records, birth certificate, medical history, and want to know who he lives with, when he first crawled and took his first steps, said his first word and sentence, among a million other things. Talk about time consuming.
• Oh yeah, my favorite - we now need to add physical therapy once a week to help him with his legs. Apparently his gait is quite affected and she thinks PT and new orthodics for his shoes may help. This is all in an effort to avoid a possible surgery to "correct" the problem.
• After we go see what the Orthopedic surgeon says in October when we have the x-rays done on his hips, knees and feet to locate the problem areas.

12:20 pm - We FINALLY leave the doctor's office. I have cried through most of it. Just was too overwhelming all at once. No time to get groceries. Take Anthony to lunch at McDonalds' and feel guilt over the nutrition issues with that one, but he is super happy.

1:30 pm - Stop by the house to clean the kitchen from breakfast and now lunch from Shaun and the girls, make everyone go potty, grab the coupons I clipped and forgot on the desk, and head to speech therapy. Shaun leaves for work and closes tonight. On the way, I call and get an interview for a job lined up for tomorrow.

2:00pm - Finish the grocery list, and start writing a funny tidbit as the girls look at a magazine I brought for them to keep busy with while we wait for Anthony at speech therapy.

2:45 pm - On the road, forget to stop by the PT clinic (the one we already go to for speech has no openings for PT at this time), turn around and go back, and send all the kids to the bathroom again while I set up the eval for next week.

3:30 pm - Finally get to the grocery store, I have lots of help from the little ones, peeling corn on the cob, throwing tomatoes in the cart and everything on the bread. I end up paying full price for everything because I forgot the damn coupons in the car. The kids do great, except at the end when Anthony gets slap-happy on the girls and they are all running around, fleeing and chasing. I corral them all, pay, and the bagger asks if I need help getting my stuff to the car. I thank her for her offer, let her know i can handle it, and then ask if she could come home and help me there? No go.

5:30pm - Finally get home. I have 9 voicemails and 5 emails, and 3 very hungry children. I then realize how precious they were in the store and ever so helpful, on empty stomachs during snack time and a half an hour past dinner time. I am totally whipped, and we have pizzas. I go to slice them and realize I cooked them with the cardboard still on the bottom.

6:30pm - I muster up some left over energy, and I clean all the bathrooms, vacuum and wash all the floors and do 4 loads of laundry, get the kids to bed, talk to my grandma, my mother-in-law, and dear friend from Iowa. I stay up to make a pasta and vegetable salad (that I pray doesn't suck) and cut fruit for Bella's little family birthday party with my parents and grandparents, and us which is tomorrow night. Can't bake the cake because I didn't buy the ingredients I didn't know we were out of. So I will have to do it in the morning before the little girl I do day care for shows up.

1:20 am - Call it a frickin' day and go to bed.

Gotta laugh - otherwise I'll cry.

I met a man today

I took the kids to get their haircut today and as we were leaving, there he was. He had a great smile, dark hair and in his early 30's. I saw him and just couldn't take my eyes off of him. I watched him tell the stylist what he wanted, sit in the chair and remove his glasses as the cape was draped over his shoulders. He was so confident, so sure of himself, he was kind, and he was so considerate. I took a little long to pay and let the kids look at the books in the reception area a little more, just so I could watch him.

This is the 2nd time since moving here that I have seen this kind of man. The kind that make me stop, try to watch without being noticed, and then smile back when I am caught, trying to look like I wasn't just looking.

The last time the man was blond, with blue eyes. He wore a black leather jacket with blue jeans and also had that total confidence. He was a little young, early 20's. But nevertheless took my breath away. I worked up the courage to talk with both these men and had some very memorable conversations with them.

I so desperately wanted to know how these men became the way they were, such spirit, such presence and with such character. I watched them, I remember them, and then I look at my son. And my mind wanders.

Like Anthony, both these men have Down syndrome. They seem so independent, polite, considerate, and confident. How did they get like that? How do I instill that into him, or does that come with the extra chromosome?

Unlike watching today's teen girls and young women, and then freaking myself out over what it will be like when my girls are that age. I watch men like this, like Anthony, and I feel such hope. If they, without the opportunities Anthony has in today's world, can turn out like this...what will Anthony be like? Will he walk into the hair salon and pay for his own haircut? Will he drive the grocery cart without hitting anything and buy his own milk? Will he play on a softball team, hold a job, go to dances, or have season tickets to the car races? Will he live on his own, or with us? Will he have a room-mate or a wife?

I wonder so much. Sure there is fear, with all 3 kids I have that. But since moving here, I keep running into these adults with DS and I keep having to look into the future and ponder. I look at my little boy and I can't believe how far he has come already, it makes me ask myself, what on earth could the future hold for him?

I know the future is one I can't even imagine for him yet. But I sure think about it a lot.

I hope he has that confidence, that charisma, that "little extra".

And a black leather jacket.