Every Day

We had our first meeting with the Muscular Dystrophy Clinic for Manny on Monday.  I have been so excited about this meeting for a very long time ... it's the offer of support, answers, services and people who "get it". 

We were greeted by a wonderful woman, Paula.  We've talked several times on the phone and she is amazing.  Manny, however, was crying his pitiful "scared cry".  You see, it's the same building where he has had MANY painful procedures happen to him.  He recognizes the parking lot and starts crying there!  I kept telling him "No owies" but he didn't believe me!

Random picture I like to call "Big and Little"

He was making quite the scene in the hallway.  I told everyone he'd sweeten right up. 

We got in a room and they started with the usual check up things like blood pressure and he calmed right down.  He started chatting it up with the nurses. 

Then Paula walked in and was so sweet to him and he had the most incredible conversation with her.  He was saying complete sentences about a sticker he'd just gotten.  "Diego kick the ball" and similar other sentences.  She asked the color of Diego's shirt and he said, "Yellow".  He named Letters and numbers. He impressed her with all sorts of other skills he had.  He said, "Bye Paula" when she walked out and she melted.  (He is not quite 25 months old.) 

I heard her talking in the hallway with the Doctor about how smart he is and how is he meeting many of the preK skills.  The doc walked in and said, "How old are you?"  And Manny would not even LOOK at the Doc! He refused to do anything or say anything the whole time he was in there.  Doc was not impressed! 

The Doc has been running the MD clinic for several decades.  There are MANY kids in their current clinic.  There are none with Merosin (Manny's diagnosis).  So he says he'll research it even more.  He could tell I was "up" on the diagnosis and even asked me if I knew of any treatment options I'd run across.  (No) 

We had some very frank discussions.  And most was just what I expected.  There was one thing that struck me though ... and it's taken me 24 hours to process what I've heard. 

I know it will be difficult to explain but basically it's in regards to prognosis.  No one knows.  I'm at peace with that.  I know Manny's life and the number of his days ... firmly in God's hands.  I know that one illness could take him out. 

With the previous diagnosis they didn't expect him to live until 1 or 1 1/2.  But from what I've read about Merosin, it's all about how much Laminin is missing.  Those who are missing some ... there are kids living until their late teens and early 20s.  With kids missing most, they typically live until about 8-10.  The kids with none ... they often don't live until age 2. 

Manny's muscle biopsy showed he had none. 

And in fact, he is soooo severe with his symptoms THAT is the reason the Doc didn't originally suspect Merosin when he saw him last year.  Kids with merosin rarely are tube fed.  They rarely have their stomach muscles quit on them.  They rarely show severe symptoms at birth. 

So all that said ... the doc says he is already living on borrowed time.  I think I knew that deep down, but ... it still takes the wind out of you in a way that you can't imagine unless you've lived it.  For the past 24 hours, it feels like I can't take a full breath. 

Now what changed? Nothing. 

But I did think we'd have at least a few years of not worrying about him and his lifespan.  But the truth is, I guess I needed to be made aware (again) that EVERY DAY is a gift.  EVERY DAY is a bonus.  EVERY DAY is to be celebrated. 

I don't live in fear or worry constantly (often, but not constantly).  And when I consider such things ... the thing that hits me in the face most is this:  How to help him live his best life?  What will bring God the most glory?

So today, I am made aware again of just how fragile and precious life is. 

EVERY DAY is a gift. 

What are YOU going to do with today?

INTRODUCING ... Zoe's Book!

Zoe, A Cool Cleft Kid: A Journey with Cleft Lip and Palate (By Beth and Zoe Gore) is finally available for purchase!  At the end of this, I will give you the link on how to get your very own copy.  But for now, we'll just tease you with the cover...

Cleft lip and palate is the most common birth defect in the world, affecting about 1 in 600 kids.  We all know about the children in the magazines who need cleft surgery (and there are wonderful organizations who help with those surgeries).  But did you ever consider this also affects the child next door to you?  The little just born down the street?  And the little girl across town? 

Zoe is a brave little girl to want to discuss this openly.  In this book, we describe the social, emotional and medical things that typically face a cleft affected child.  Many of the "feeling" pages are in Zoe's own words.  One page, for example says,

Some kids are mean to me because they see my face and think I look scary.  People say mean and hurtful things to me because I look different.  They stare at me.

Other pages discuss her wishes ... like how she wishes people would realize she is a "regular kid". 

This book is written at about a 6-8 year old level (though children and adults of all ages will likely love it as well).  It's a photojournalistic, non-fiction experience of one little brave girl, Zoe, our Warrior Princess.

In the next weeks and months, Zoe and I have been asked to do several interviews on the subject of Cleft Awareness.  We are humbled and excited by the new journey we're on. 

If you'd like your very own copy, you can order it at http://www.sekelhouse.com/zoecleft.html

Please help us spread the word about cleft awareness.  Help us spread the word about these amazing kids! 

More Prejudices Confronted

Our goal for the Summer had been to go twice a month to Busch Gardens Tampa.  But alas, we're not doing too great on achieving it.

So on Thursday, we decided to brave the heat and go.  Little did I know that the heat would be the least intensive thing we'd encounter for the day.

For some background, we've been going to BG for 10 years and had very few issues up to this point.  None basically.  We have yearly passes and go every chance we get.

Each child has his/her own card.  It says their name on it (we all have the same last name).

When we got to the turnstiles yesterday to enter the park, I did like I always did ... hand each kid their card and help them walk through.   After the kids were all through, the lady took my card and said to me, "Do all these kids live with you?"  Now ... in my 12 years of being a parent of adopted transracial kids, I have gotten used to MANY questions and I can tell the difference in tone of a person who is curious, a person who is genuinely interested in our family and a person who is being intrusive/rude.  This person was being rude/intrusive.  I have no clue what she was trying to ask or why.

So the conversation went like this:
Her: Do all these kids live with you?
Me:  Yes, their my kids
Her:  But do they all LIVE with you?
Me:  Of course they do because they're all MY kids
Her:  They're not all yours.
Me:  Yes they are.  They are ALL MY kids.
(Meanwhile, she is holding me hostage basically as she is not letting me in the park ... the kids are already in.)
Her:  but ...
Me:    THIS IS MY FAMILY.  THESE ARE MY KIDS.  Have a nice day. 

The kids were standing there hearing this lady drill me with this tone and they immediately asked, "Why wouldn't she believe you?"  I HATE that part.  Now we have to have a conversation about intrusive people, adoption, transracial, etc etc just because this woman was ignorant and blatant about it.  Over the years I can ignore most of it, but sometimes it's just IN YOUR FACE.

I know this dialogue can't properly convey the nasty tone in which she said this ... because the words themselves are pretty innocuous.  I've had similar conversations (sans tone) that were quite pleasant.

And as I stood there, I was just trying to make the conversation END.  But truthfully, I probably mishandled it, I should have asked her, "Why do you ask?"  But I made the decision that it would only prolong this nonsense.

After we finally got in the park, we had an amazing time as usual.  Fun rides, good food, lots of drinks.

One funny thing was Manny.  He can ride very few rides but he likes the ones he can do.  The train is one he loves.  There is a baby train and one of the kids has to ride with him in case he falls over.  They have fun with him too.  He used to pitch a fit when the ride was over but he's figured out that we have to get him up, get back in line and then sit him back down.  So every time I'd pick him up he'd immediately start with saying, "Train sit, Mama."  His way of saying he wanted to ride again.


Eventually the motorcycles caught his eye (he LOVES vehicles of all types).  He is old enough and tall enough to ride but he doesn't have enough trunk/head strength to ride it but ... he doesn't understand that.  He just sees a cool ride and doesn't understand why we won't let him on.  Same with the airplanes.  Up until yesterday, he never even asked to ride them ... now he is smart enough and verbal enough to convey what he wants.  It was so very sad to have to tell him no.  He pitched the biggest fit he's ever pitched.

And truthfully, I was crying inside!  It's just not fair.  It's times like this that I feel so completely helpless.

I eventually distract him with new things and he's back to his happy self.  But it still haunts me.  I'm sickened to see a "regular" two year old run and play and jump and climb.  Manny used to not notice what he was missing.

But now he is starting to.
And it breaks my heart.

Towards the end of the day, the kids wanted to see this new show.  (They had "Bendy Chinese girls" as Zoe called them! LOL)  This theatre has 4 sets of stairs leading to the entrance so they have a side entrance for wheelchairs.  No strollers allowed.

Manny was in his kidcart wheelchair, all his equipment hanging from it.  He was on his tube feed and that was hanging on the cart.  The whole thing SCREAMS "disabled child".  We headed into the entrance and were met with this woman demanding we leave the stroller outside.  I told her it was a wheelchair (usually that's enough).  But this woman was insistent that it wasn't.

So now I have to stand there and "prove" he's handicapped?  Seriously?  How degrading.

After several rounds of "This is a wheel chair", "Prove it", I was fit to be tied.  I never lost my cool.  Never raised my voice.  But I was in shock that I would have to prove it.  She eventually decided that the parking decal from our van would suffice!  SERIOUSLY??  I'm supposed to walk to the van, peel of the label of the van and bring it in to her?"  I started to show her the tube connected to him and then realized it would be violating Manny to do more than that.

Eventually, I just walked around her and sat down.  The other lady at the door ushered us to the spot to sit and tried to be helpful.

As I collected myself, I looked down the row of other people on the handicap aisle and discovered they were all rental scooters.  NOT ONE PERSON there was in a permanent need of a wheelchair.  So it made Manny the most disabled person there by far.  And yet I have to stand there and argue with this door greeter about the need to occupy a handicap spot??

Truthfully, it would have been almost impossible for me to use the regular entrance.  I'd have had to carry him, carry his equipment, carry his tube feeding supplies.  (All very heavy) and then leave this very expensive wheelchair out in the park.  But that's what she wanted us to do.

At what point does he "deserve" this spot?

And yes, I can see it from her point of view as well.  I'm sure people take advantage of the system all the time.  I know of many people who work a system, trying to get round the rules, get away with something.  Those people make my life sooo much harder.  I know there is no way for her to know the difference between people like that and people like me.

So to me, it says the system is broken.  I'm not sure what I'll do about this but 2 incidents on the same day is enough to make me do SOMETHING.

Right before time to leave, there was one more outside show the kids wanted to see.  While we sat there, I saw a fellow special needs Mom.  She and I have chatted before and turns out she was working there part time.  We chatted.  She asked how our day was and I mentioned the wheelchair incident and she was more horrified than I was.

Moms of kids with special needs know how difficult this world is on a daily basis.  They understand that we're only one phone call from bad news.  One cough away from a hospital stay.  One bad day away from ... who knows what.  They know we have to fight for services, for rights, for IEPs, for understanding, for compassion DAILY.  They know that all we want it to make it through a day without having to fight for anything.  Without out worrying.

My point?  If you're a family with a child(ren) with special needs, I am your cheerleader!  If you need encouragement, let me know as I'm your girl.  If you know a family with special needs kids, do something special for them.  If you're out in public with someone a family with special needs kids, smile at them.

We are all just regular people trying to live a regular life with extraordinary kids.

I've also learned through this, that I have amazing friends with colorful vocabularies! Love you all for the  new choices of words.  

Oh where to begin?

I've discovered that the longer I go in between blogging, the harder it is to write an entry. Why?  Because there's no way to accurately tell what has transpired.  But then I get these messages from people asking how everyone is. 

So ... Here's a catch up post.  Everyone is great.  We've just been busy doing "Summer" things. 

Zoe had her second post op appointment and the doctor commented on how great she healed.  She still has stitches back there after 4 weeks but she says it doesn't feel any difference. 

Manny is doing great too.  He had a viral infection of some type where his tonsils swole so large that he couldn't swallow his saliva.  His fever went through the roof.  But it only lasted a few days and there was nothing we could do for him anyway. (Poor guy). 

Today, the two of them had their annual check ups.  Both are doing great in every area.  We see the doc often so we already knew that but today was the official okey dokey.  Zoe is in the 75% for height and 30% for weight.  The doc commented on how she might be getting too thin but I realized what the issue was ... during her two weeks post surgery, she lost 2-3 pounds.  She'll catch back up in no time.

We were gone for a week for a family reunion.  Dan's family gets together yearly and it was in Panama City Beach this time.  We were without internet so no way to update what we were going through.  Also, Dan is a security guy and he doesn't like to alert people that we are away from the house.  (It makes sense, BUT ... doesn't make for fun blogging!)  Then by the time I'm back, I just don't feel like blogging any more. 
I'll see if I can post a few pics soon from the vacation.  I was mostly busy having fun and too busy to actually take pictures ... hopefully some of the family will share with us. 

The other thing I'm busy doing is getting ready for another trip.  A BIG one.  (More details to come soon.) 

So there you have it ... all doing well.  Having fun.  Enjoying life.

The Pop Quiz

Lately I've been musing on what kind of adults I'm raising.  (Note: most people say they are raising kids but I have the philosophy that I'm raising adults ... currently they are children but that is not their end state. )

Am I raising people who will be kind and compassionate?  Leaders?  Followers?  Good citizens?  Will they stay with the values I'm trying to instill?  What notions of life am I teaching them?  Will they be people who can hold down jobs?  Can they live independently some day?  Will they be happy?

Will they ever learn how to lift the lid when they pee?  Will they ever care that their shoes are on the correct feet?  How much money do I need to be saving for therapy for the ways I'm sure I'm warping them?

You know ... the important questions of life.

I think most parents face these questions.  But parenting is like going through 18 years of school without having a report card.  You have no clue if they are going to "pass" or "fail" until they are presented with the tests of life.  You get hints along the way but you truly never know until they are smack dab in the middle of the test.  And all we can do at times like that is to hope we have raised them right.  Hope that we have taught them what they need to know to pass.

We do get hints every now and then about how they're doing though.

The other day, Luke (8) was not feeling super well so he didn't go with Daddy when he took all the kids for a scooter ride in the park.  He stayed with Manny and me.  I sat Manny down with some blocks and some padding in case he fell over.  Luke joined him.

For the next hour, they built together.  They laughed.  Luke would build a tower and then help Manny crash it down.   There was a moment where Manny couldn't reach the tower and instinctively, Luke got up and went behind Manny.  Luke raised his little arms and leaned him forward just enough for Manny to reach the tower and crash it.  I wondered how many 8 year olds would know what to do, know how to do it and do it.

 My Mother's heart was full.  I thought, "Wow" ... "I'm raising kids who know how to think about and care for other people."

Pop Quiz Grade:  A+

Regular Days

I find it amusing that I only post stuff when things are not going well.  I think of a million things to post during "regular days" as well but never find the time to squeeze it in.

But I must admit, it's because I truly ADORE and love those "regular days" and I want to be fully present in them.

So here are just a few things around our house lately that are in the "regular" category.

School is out and I'm enjoying having the kids home.  Every Monday we are working on some schoolwork  though anyway.  We have 2 kids that find writing boring so they are not as neat as they need to be (i.e. you can't read it).  One kid is learning cursive.  One child is disgraphic so we're working on teaching typing.  One child is just learning letters.  So writing is a huge deal around here.  And math.  We have 2 kids who are math whizzes and they LOVE to learn math.  The faster I can teach them, the better.  Two kids struggle with math ... just the basic concepts ... so all the reinforcement they can get is important.

We're also trying to do fun things like Chuck E. Cheese, the playground, swim, bowling, parks, etc.

Towards the end of the school year, I was feeling over-run by clothes that were getting too small, toys running amuck and school papers multiplying.  I put things in laundry baskets and put them in a closet.  Once a week, we're doing "organization day" where we pull out several laundry baskets and empty them.  Like last week it was the toys.  We had each kid sit around the pile, one kid would hold an item up.  If it was broken or missing pieces, it went to the trash.  If it was all there but no one wanted it, it went to the give away bin.  All the rest were claimed by someone and had to be put away.  By the end, I had several free laundry baskets, kids happy with their toys, etc.

We're also doing mundane things like haircuts (seems hair grows faster in the summer time).  We've found some time to do card games and board games.  Last week we laughed so hard we had tears streaming down our faces.  (Love that.)

"before" ... hair that defies gravity!

"after" ... isn't she beautiful?

I've tried to keep the doctor appointments at a minimum ... afterall, it would mean dragging 6 kids to the doctor.  Now I don't mind doing that, the kids don't mind going.  We actually have fun together.  But you should see the look on the staff's faces when we show up.  The other day I had to take Zoe to a post-op appointment and there was not one empty seat in the waiting room.  And there were 7 of us.  So ... we stood on the front porch area.  It was hot and humid and no one had left the office in 10 minutes so I went back inside and said that we'd be in our car, gave my cell and we headed.  I had a DVD player, some snacks and drinks (always keep an emergency supply) and we spent the next hour having a blast in the van!  When it was our turn, they called and we walked straight into the back room (past the still full waiting room) and the doc came in about 3 minutes later.  I LOVE being a Mom who thinks outside the box!

Luke's asthma attack ... sitting at doctors with another breathing treatment

I'm busily getting the stuff ready for a family reunion too.  It takes a long time and a lot of energy to move an army such as mine so I plan ahead.  (I also keep a "master list" of things to pack and just add the things unique to that trip.)

So see?  "Regular stuff".

And I can't begin to tell you how cool it is that days are mostly "regular".  Sure we have adapted to a lot of things that are quite unique to other people that we consider mundane (such as a wheelchair, tube feeding, venting, respiratory support machines, special diets, repositioning a child all night long, etc.) but we've learned to thrive in this life.  Daily activities just take a bit of adaptation and modification and then we're good to go.

So if you don't hear from me for a while, picture us LIVING LIFE!