Thursday, March 30, 2017

Five Fabulous Years!!!

This little man turns five!!!!  How can it have been five years since he came into our lives?  This little guy is my hero.  Truly.  You hear this phrase from special needs parents all the time and some take it to be an exaggerated statement, a PollyAnna phrase; but there is a raw honesty in the statement and perhaps the folllowing can explain why.  

Behind the silence he sees and knows so much more than he can convey.  He sees and knows everything is harder for him.  His little sister speaks with ease, is reciting her numbers and ABCs without a blink of an eye and easily interacting with others.  This daily comparision is always before him and yet he persists in trying, working and doing more.  We play a game of counting to three before jumping into our giant bean bags.  He mouths the words and when I push him a little more he struggles to get the sound to come but when he does his look is one of triumph!  He knows he's earned the high fives and knuckles.  He jumps into the bean bags knowing he OWNS his victory completely.


There are times I see clearly he is worn, feeling defeated for the day and simply done with the struggles.  He needs more hugs then, more laughter.  He fills this need often on his own, encouraging us to let go of the set back be silly for a moment. 

The following pictures we took after a family hike.  It is always hard on Bubby, his core and legs get such a workout with his low tone.  Perhaps he was tired to my attempts at a family selfie and partway he had to honk Keila's nose and play with her lips which had us all laughing. 


Got to get our daily 'spin' in!  This swing from IKEA was the best thing ever and while I lamented they didn't have the cushion to go inside it at the time of purchase, it turned out to be so much better without.

Yet another hike picture.  Slowly I'm figuring out this selfie business.

No matter the discouragement, he always, ALWAYS trys again.  In my book, a hero does what's hard and often unseen.   It's lonely work but there is an inner drive that keeps him at it. 

This was him at a second eye appointment.  He HATES anything medical so I came prepped with his weighted blanket, games and toys.  Thankfully we found that Midwestern University would allow us the room for the eye exam or the entire hour and a half.  It takes that long for him to relax up enough in a new environment for any decent exam.


Check out that bean bag mid throw!

He is a mentor to me.  When I'm tired, frustrated with the system, or struggling to understand new diagnosis, he inspires me to keep going on.  Sometimes I just lie on my bed, wanting to zone out on my phone.  I can hear his heavy footsteps, his odd little walk up the stairs and he climbs up on my back with a little giggle and a bouncy hug.  He pulls me out of that empty place where I always come out restless; we wrestle, tickle, jump on the bed and laugh and I find I am filled again.  If he can keep going then so can I and between our determination and faith in God we can figure things out.
                                  
Family fun at the Special Kids Day held annually in the McCormick Railroad park.  This little man was the happiest sticky boy ever!


The battles he's won will never be recorded except in my books and our family memory.  He has only the medals of achieving skills that comes easily to others.  But I do know that he doesn't take any of  these things for granted and because of all this I've learned that there is no simple life  But more importantly, that life can always be good


Our little professor sporting his new glasses from Specs4Us, a company with frames designed for those with DS. 

Hiking yet again!

I work hard on each kiddo's cake.  It's my way of saying how much I love them.  For Bubby, he loves anything citrus and all ice cream so I made him a lemon ice cream cake shaped in a basketball. I find it ironic that it would be our child with the lowest body tone that LOVES sports and especially basketball.  This was the cake's halfway point.

Kent took the day off and we went to Peter Piper's for his pizza lunch.  This kid has some real priorities when it comes to speech.  His first clear verbal word was 'go' (used most frequently when he's had enough church or therapy) and his second was 'pizza'.  'Popcorn', 'cookie' and 'apple' come in close behind.

The DSNetwork had a celebration for World Down Syndrome day on his actual birthday, so he enjoyed some train rides and bouncing on a massive bounce pad with Baba.




There was awesome music handpicked for our DS kiddos.  If he wasn't enjoying a snow cone or bouncing, then he was dancing his little heart out to some of his favorite songs.

We invited his teachers from church to come and share in the cake and sing him a Happy Birthday.  He withdrew a little when they showed up but as I held him to reassure him and we sang to him, he got the biggest grin on his face.  I think it was then he understood it was all for him.



There was something about his hand reaching out to grip mine, his smile as he glanced quickly into my eye.  It was the sweetest silent thanks a mother can get.

Bubby enjoyed the ice cream and the raspberries on the side.
So yes, things can be hard, but he is my hero because he has made me a better person.  He has taught me by example, by loving encouragement and genuine expressions of deep love.  I am better for him, because of him.  I treasure him and am grateful for these fabulous five years we have had together.  Happy Birthday Bubbalicious!!

Sunday, March 19, 2017

Learning and Playing in AZ Outdoors

Bug loves nature!  She can spend hours out there looking at bugs and flowers so of course a week long camp (spring break for other kids) at the Desert Botannical Garden. She had a blast and was happily exhausted each day.  I was so grateful they took pictures so I could record them on our blog.

This has got to be my favorite one of all!  She is my little naturalist and right after that week at camp she asked for a clipboard of her own!



Bug eyed glasses that help you know what they see!

A game to correctly identify what is an insect.  the scorpion was a tricky one.



She says this is absolutely adorable monarch caterpillar.





Making their own pollinator creations and flowers.


The day the hibernating tortoise (Penny) came out was a pretty exciting day.  Her sister, Poppy was still sleepy apparently and she never saw her.


Transplanting milkweed for their own gardens.

There are times like these where I wished I lived somewhere like Walden Pond where she could explore the beauty of nature all on her own.  It truly feeds her introvert soul!

While Bug had her own fun I took the other three munchkins and we took a hike at Hole in the Rock right by the zoo.  I was pretty impressed with all of them.  Bud is not fond of heights but he did really good in the end.  Bubby and Pumpkin worked their little tails off climbing these steep steps up.  Although it was a short hike I could tell it worked their bodies hard and they were tired at the end of the day.

Bubby really doesn't like to hike much.  I keep him going with songs and cheers and when he wants me to hold him I carry him for only a few steps and tell him "Monkey arms" so he has to hang on without much support until he slides back down to walk with me.  His look in this picture says it all, it's so routine now that we do it once a week.  It's that look of, "Another hike?!?  Fine!"  His Physical Therapist says it's done wonders for him though.  There's less stimming and more looking straight ahead as he walks.  He's an awesome trooper!



When you're little and your core isn't so strong, it takes a lot of work to go up steps, especially without a rail.  The littlest two refused my help and climbed each step even as they got steeper.  Where there's a will there's a way.  Perhaps this will give my kiddos some grit.


The actual hole in the rock is much deeper in but I wasn't about to crawl down in with just me and two littles to worry about.  Bud isn't fond of looking over edges so we stayed back and enjoyed the view from there.

There's lots of cavities in the rocks on the hike up so we took a few shots because everyone was proud they made it there.

Afterwards we got some snacks and through Facebook learned of some Pok√©mon 'nests' and drove around getting some that Bud and I needed to evolve more.  I thought the little ones would be too exhausted to play but wherever there is some climbing near a slide, Pumpkin MUST play!


For a random treat we got fried chicken for Bud.  He is the one in the family that misses meat the most. He thought it was the best tasting thing on earth!  It reminded me of when I was young and my brother and I would argue over KFC or Church's chicken.  It was my treat back then too and I had to share that story with Bud who  thought it was cool.

I so love these kiddos.  Homeschooling has given me so much time to truly enjoy their company and share in experiences.  It's a little easier to be in the moment rather than slogging through the long lists of 'to do's'.