On and On

Sometimes, things just feel so on.  We went to our first visit with a new Occupational Therapist on Monday, who is a feeding specialist.  I wanted to get some extra help with helping Griffin learn how to eat table food.  Right now he only eats, puureed foods.  Anyway I was refered to her, and she is awesome! Griffin loved the place, the room, he was so happy, crawling all over these foam structures, circleing this monkey rug.  And when she asked him to do this puzzle, with a square, circle, and triangle...boom, boom, boom...he did it!  And when she asked him to stack some blocks...boom, boom, boom,...he stacked 5!  And when she asked him to string beads (which he has never even tried before, because no one has ever done this with him) boom, boom, boom....he got really, really close!  And when she asked him to draw a straight line like her...boom, he did it!  

Oh visits, like this rarely happen, and I was just so proud of him.  He is so incredible.  Anyways, she went on to show me some exercises to do with him, to help him eat, and I can already notice a difference.  We only get 8 sessions with her, so she is going to pour as much information into us as she can.  She was the sweetest lady.  

We took Griffin out of the little school he was going to for 2 half days a week, so we could free up some time for him to go and do and try other things.  I might have mentioned that before but oh well.  We are going to try some horseback therapy sessions, some Mommy and Me swim lessons, and some music and sign language kindermusik classes.  

Griffin has stopped pulling up to stand as much as he was, but has replaced it with climbing all over everything.  It is so precious, I especially like it when he crawls on me :)  

Me and Matt made some interesting dishes the other day...swiss chard and cheese, which was good, roasted kale, which was good, glazed radishes, not so much good :/

This weekend, Griffin is going to Terri's and me and Matt are cleaning our garage!  No joke...it is knee high all the way through with stuff!  I can not even take two steps in it!  YIKES!  

Wish us luck!  

Here is a fun photo serious I caught today...

mmmm...yummy popsicle thing mom

mmmm..yummy....

 drip, drip, drip...yummm...popsicle juice and slobber...

num, num, num....mmm...messy...

Spontaneous TOSS!  

All done mom!  

Time to play!

Just look at my boy!  So blessed :)  

ahhh...and for the past month or so, in the mornings when Griffin wakes up around 730ish, we bring him into bed with us, as we doze for another 30 minutes and he snuggles with us and plays, and it has become my most favorite time of day, and dare I say it, making me into some what of a morning person, because I noticed tonight that I am actually looking forward to the morning!  

One full momma tonight my friends :)  

:)

I am pretty sure me, Matt, and Griffin were all smiles this weekend because of some certain vistors....

Oh how they fill the house and every space they inhabit with such wonderfulness.  I miss them, all of the time.  I miss just being around them and having them around so what a weekend I had when all 5 of us got to be together!  

There was movies being watched, talks being had, suma wrestling going down, stuffed "pregnant" bellies being worn, and all sorts of fun.  

Griffin adores them and they love him so much.

Yay!  

Noticing

My little has been sick now for 2.5 weeks!  We are on round 3 of antibiotics!  

Somewhere in the midst of him being sick, anxiety creeps in, and starts to whisper to my soul, and to my mind, that Griffin is going to die.  

 Sick, I know.  

I don't even realize, that it is happening, until all of a sudden I am having a melt down because my baby, has ear infections, a soar throat, and it is affecting his appetite, and makes him nauseous.  Those are not fun things, but certainly no need to think I am losing him, right....?  

I think deep down I just don't believe that everything is really OK.  

Before my child, I was so removed from death, I didn't really understand any of the emotions people felt when losing a loved one, because I have never known any one to die, except for my great grandmothers when I was young.  

Well the apparent fragility of Griffin's life, all that it has taken us through, surgeries with "risks",  tests for "risks", being brought into an entire community where so many children's lives are just so fragile, has brought the idea and complex emotions of death a little bit close to home.  

The other day when driving, I realized that though Griffin's life appears to be more fragile than others, it is in fact not.  All of life is fragile, and in that miraculous, that it all keeps going.  That God is in control of it all, suspends it all, and controls when we go, and when we stay.  I believe any way. 

 So in a way Griffin just doesn't have the curtain that is in front of most other people's face that leads them to believe that they are the ones in control of their life.  And at first the removal of this curtain can make you crazy, as you fight so desperately to remain in control, but as you learn that you never were in control in the first place, slowly freedom and peace can crawl in and make a home in your heart, built from trust.  Trust in the creator of all things, trust that there is a creator of all things.  

And here is another ruthless confession.....I realized a few months ago, that I have hesitated to fall madly, deeply, desperately, totally, in love with my little boy, because of the fear that one day I might lose him, and knowing how hard it would be to carry on, if I had allowed the deepest parts of my soul and heart to grow little strings and get intertwined with his little heart strings, to the point that they were one, knowing that a break in those ties would be crushing.  I was trying to protect myself.  Fear of being hurt or more rightly devastated, fear of not knowing how to handle something like that, held me back.  Another feeble attempt to control my life.  

But then the second epiphany came, that the regret and the guilt of holding back would be more crushing than the actual cut of heart strings.  So I have been diving deep with my heart, not holding it back, and letting it soar, even though it is scared as hell.  

I love my little boy, every thing about him, everything about how that extra chromosome affects him,  with out that chromosome, he would not be him.  And I will take an infinite amount of sick, rough days with him, over any days with out him.  

So bring it life, show me what you got, I'm not going to be scared and I'm not going to fight you anymore, I am here to embrace you.  This God thing, can show me that my heart is a lot bigger and stronger than I thought at first.  

While he was sick, and I was scared but not running, I noticed some things, somethings about him that took me deeper in love....

1. When he was horribly sick and not eating, and I had put him in his high chair to yet again try to persuade him to eat a little, I turned on some music on the lap top that was above and behind his head, and watching him twist, and try so hard to turn his body around in a chair that he strapped into, made me fall in love with him, this persistent little boy, who just wants to see the screen of where the music is coming from, whose head was tilted up and backward for half of it.  

2.  His love of the vacuum cleaner makes vacuuming a spiritual experience, to watch my child, this creation, just love something so much, he climbs on it, he chases it, he tries to vacuum, he looks into the light on the front with his eyes as close as can be to it, it looks like he is trying to peer through the head light, like it is a peep hole that will show him what the heck is inside this thing!  

3.  When I am rocking him night, reading a beloved story of his, and it gets to one of his favorite parts, where I "cock a doodle doooooo" in my best rooster voice, and he whips his little head and body around so fast and in a way that I can't believe his body can turn, just to see my silly face make my rooster noise, and then he smirks, like good job momma.  

4.  How when he is fighting his sleep, and I know he is exhausted, and he knows he is exhausted, and we try all the usual stuff and he just can't get comfy, so I lay him in his crib and hand him his  "go nighty night blankie" (that I carry around more than he does, because I am trying to get him attached to it)  and he KNOWS what I am trying to do with that blankie, with all of the times that I make it tag along with us, he KNOWS that I am trying to get him to need that to go to sleep instead of me, so when I lay him down in his crib and hand him his blankie, and this is what he does.....I just fall more in love with him.......he looks at it, looks at me, and either A: pushes it away from himself, B:  throws it out of his crib, or C:  throws it so the side and all of these are immediately followed by him then looking back at me with outstretched arms.  

5.  I love when I dance with him to music around our house, how when I raise his arm over my head, how he smirks at me with pure delight.  

6.  I love how he climbs all over me, no matter how I am sitting.  If I am on my tummy there is Griffin, sitting on my back , my bottom, or my legs.  If I am sitting indian style he is either crawling up my back or has crawled into my lap, or in trying to crawl into my arms.  If I am laying on my back, he is sitting on my tummy.  He does this al on his own, I do not place him any where on me.  

I have been inspired to live and love deeply.  Set your fear down and go for it, my going for it, looks a lot like closing my eyes tightly, while I stumble, 2 steps forward, 3 steps back, but I do crack my eyes open every now and again and when I do, I sometimes wonder why I am so scared in the first place.  

Sorry if this post is more than you cared to know about me, but the people who love me, know all of this about me already (because I have talked it through with them)  and to come here and post something that wasn't really on my heart, felt fake, and I am tired of holding that one up, so to post tonight, I had to be 100% myself.  I hope you like.  Because I do.  

Much love and peace to you tonight my dear friends and family.  

Our Connection

I have been thinking about connection lately, in particular, my connectivness with Matt, and with Griffin.  I read quite a bit of other mothers blog's and mothering magazines.  And a couple months ago I realized I wanted to pay close attention to my connection, my relationship, with Matt and with Griffin, and reflect on how it was and ways I could make it deeper and strengthen it.  

Today at speech and occupational therapy we tried to do things a little differently this time.   We let Griffin go in the therapist's arms, not carried by me, and to only interact with her during therapy, and have me stand back behind.  We tried this because we had noticed, well I had noticed, that I was doing most of the interaction with Griffin and he really wasn't wanting to participate with his therapists like he does with me at home.  So maybe this would take the mama crutch out of the equation. 

Well it just melted my heart, what he did....

They were sitting together at this touch screen computer, where Griffin would touch the item asked for, and about every couple minutes or so, he would turn around to meet my eyes, to make sure I was still there, I am tearing up remembering it.  

He did this the whole time, and after one time, his therapist said he let out a deep sigh, like "Oh good, she's still here".  

I felt connected to my little boy in those moments when he would find my eyes, and I would nod and smile, saying with my heart that he is doing good and all is OK, I felt deeply connected.  

And it assured me that although we have moments when the connection has flown out the window, like this morning when I was trying to change a huge poopy diaper at 7 in the AM and he has decided lately that he hates it if I hold his ankles together to lift up his booty to clean it off, and so he was screaming and I was getting frustrated, poop every where now, and me trying to come up with a way to make this work ;)  

Even though sometimes I forget what is really important and I get wrapped up in the Me-ness of mothering, we are still connecting, through out it all.  Momma and son growing along side each other, teaching each other the way.  

And just to share a little bit about where Griffin is at.  He has started clapping lately and it is so cute, he can sign book, and dog, and go.  Almost signs more, eat, all done, kitty, and pig.  

He still is eating baby food and not table food yet.  But the eating of baby food has really picked up.  He drinks from a straw in a sippy cup, but does not like to hold it himself, although when my back is turned he will drink it on his own sometimes.  

He does the soldier crawl like no other and gets all over everywhere.  He is one unhappy boy if we are at a place that I can't let him crawl around.  

He was pulling up to stand quiet a bit but he has been sick these past couple of weeks, and hasn't been wanting to.  

Before this recent bug, he was walking a little in PT while holding onto the  grocery cart.  

We started him on these specific vitamin supplements for kids with Down syndrome and I am excited about it. Here is the website.  Nutrivene D, is what they are called, and they are kind of controversial in the Down syndrome parenting world, some people support them and others don't.  I will let you know what we think after a little while on them.  

We are going to try Hippotherapy, which is horse back riding therapy!  I am super excited for that as well.  

I used to put all of these hopes on Griffin, like a time table of hopes.  And I don't think hopes are bad but sometimes hopes can rob you of being present in the moment, especially when your hopes cause you anxiety.  I was realizing the other night how I often think like this, 

"Once Griffin has heart surgery, then this, this and this will happen, and then we can relax and then it will be easier"  or this one, "I really want Griffin to be walking and eating on his own by three because then things will be easier"

Woa, Woa, Woa!  First I have no control really over when these things will happen, and second, is life really going to be easier then, no, and third, what's wrong with right now,.... nothing. 

Everything is really really good and Ok and exactly how it should be, and I only have to be here to experience it and to serve and to love and to be loved.  

Sometimes I think that having a special child or a high needs child, makes me work harder to find that connection, to know what he wants, to communicate me to him, to know what to give him, what he needs, to be available more to him.   And I love that....I feel honored and blessed that I get to live a life that stretches me, and humbles me.  

I think that he needs me more than other children, and I probably need him more too. 

Oh how I love him so....