fridays are for

watching the construction trucks do their job across the street!

fridays are for fun. the weekend is upon us and it is always a happy friday.
now that we are driving to morgan hill 2x a week in the morning (for OT) and i'm driving to gilroy 2x a week in the evening (for work) ((making that about 5 hours of drive time; yuck!)) i relish friday. because that is our home day. i do all the house 'chores' on thursday and so friday i'm able to just 'simply be' home with the boys and not trying to pack snacks for an all morning adventure, or put on makeup and nice clothes on for work. i lounge in my yoga pants all day on friday. there's no long or fast runs on friday, there instead are morning walks around the neighborhood, playing outside in the backyard before lunch, there are naps in the afternoon and an entire day spent; just the boys and i. and so i relish our fridays all the more. it is my day of the week that i don't have to worry about work or ot and i can simply relax and enjoy just 'being home with my boys' . caleb and i baked cookies this morning. just the two of us while lucas napped. i wasn't worried about making sure his ot exercises were done' i knew we'd get through them eventually today. i wasn't worried about where we had to go next. the house was warm and cozy while the fogged rolled on outside. fall air was crisp around us. i relish these mornings all the more because they are so fleeting. i see that now as we adjust to driving and more time away from home. new routines are good, but i cherish our old ones too. i cherish these days home with the boys. sometimes my heart aches with the whispered knowing that they'll be grown and gone all too soon. their baby rolls and baby scent fill my air up with longing for time to go slow so that i can inhale their sweet scent for as long as possible.

we're excited for a restful weekend of family time.



and if you are feeling like you need a little friday inspiration? watch this video. it is amazing! my friend marisa really inspires me with how she approaches art with her daughters. it is all open ended . i always am always inspired after reading her blog and i found this video through one of her readers. so i thought i'd share. i love how we as parents have the magic to open up these beautiful experiences for our children. we provide the 'environment' and then we can simply step back and watch as they do their thing :) for the boys they are usually most interested in the backyard (exploring and collecting different objects they find, pretend play (caleb) and mud digging, puddle splashing (lucas). music (dancing and creating sounds with different instruments), building with blocks and baking (caleb) oh how caleb loves baking! there are so many things learned in these simple activities. and i am always fascinated and enjoy the simple act of sitting still and quietly as the boys play while i watch them learn and engage in their world!. i'd love to create more open art experiences for them in the future.

 what inspires you and your children?

happy, happy first fall friday! :) i can just smell my pumpkin spice candle burning, an apple pie that hubby wants to bake this weekend, the pumpkin picking hunt that will begin soon, and every fun fall thing we'll be doing this season! and that's why i love having a fall birthday boy! we get to celebrate his birthday just as the leaves begin to fall beautiful red, orange, and yellows on our front lawn :) i love the change of season. i embrace the newness and all the activities that come with each season. it couldn't be more perfect as we enter into this new 'life' season for our family with change and 'newness'. change is good. it is hard and it challenges. but it is so good for the soul. not saying i don't put up my fair share of missing 'old seasons' but i embrace 'the new' too. slow to warm up sometimes but give me time...i go in with everything i've got.

a season of strengths

i read somewhere and of course, i've heard it plenty of times.... focus not on their struggles but on their strengths. this is a season of change. of new routines being formed, new friendships budding. 'blooming' where we are planted. we're finding strength in the struggles. hope and courage are roaring.

helping little brother get out of his car seat

 i'm focusing on his strengths. his big brother love and protection that he shelters lucas with everyday in so many different ways. his silliness and sweetness all bottled up in a perfect way.

daddy's message to caleb in the morning (melt.my.heart.)

 and i'm so grateful that their daddy is beside me, sheltering us with his strength. there is just something so special about that 'father' bond that i see blossoming and growing. the days daddy leaves for work before  caleb wakes up are hard on caleb and hard on me. caleb takes up to an hour or more to get out of his funk and so i'm learning ways to help his body 'wake up' like doing massages and joint compressions and brushing. i'm learning so many great things and i'm so grateful for his OT. she's a very special person and caleb is growing in her tender care, she's an answer to our whispered prayers.

 i'm grateful for these two. their personalities and temperaments that bring out the best in one another. when one needs to be picked up...the other is there to do the lifting. lucas is my peaceful blessing. he is the calm force in our home, just like his daddy. the ying to our yangs. a beautiful blend.

  the ebb and flow of the tide brings us new things and new ways to help my sweet boy. and lucas is right there alonside his big brother. clapping a cheer for caleb when he tries something new. laughing and smiling as he watches his brother. lucas, crawling his way out on the floor next to caleb, forcing caleb out of his shell to join him.

this is a new season for us. we're finding strength in our struggle and the stretching feels good; even if it hurts sometimes.

beach day

sunday was a beach day. the air was perfectly crisp and 'beachy' i could feel my lungs relaxing with the freshness of the day. the boys were happy playing in the sand (daddy included) and i got to dig my toes deep in the warm sand with a good book.

i made a beach video since i'm all out of blog storage and can't upload my pictures. so this means...pay a monthly fee or start a new blog...leaning toward the new blog. (which means it'll mostly be the same exact thing just a new blog address with fresh storage space). i'm still pretty sad about this!

when i sit down and i look at these pictures of the boys, they fill my heart up. they don't show our struggles. they show a lot of love. love between them and love between us. people don't get to see the struggle on a blog or in pictures. we look from the outside window into peoples' lives. we don't always see their pain and sorrow. joy and happiness is much easier to see behind a camera lens and we only see what we perceive. you never know how you'll be a source of comfort to another. kindness spreads only goodness. and so i bottle up each act of kindness bestowed on me and then i try and pass on a little too. i'm so grateful for our family and for friends who pick us up when we've fallen down. honestly, it feels like we're tripping a lot these days...stumbling around trying to find our way. and i'm glad we have sweet souls who gift us with 'flashlights' to light the way, warm hands and soothing words that carry us along through the dark. They are angels on earth.

happy friday

 

 

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 I wasn't feeling my usual happy friday dance moves today. so instead i pulled out some other inspiration besides music. words. words have always brought me peace and hope. Here are some inspirational words I read today.

 

Happy Friday!

 

This weekend means....

a 10 mile run (yikes...how is even possible that i am saying that. i don't even know)

naps. i love weekend naps.

family time and maybe even another beach day.

i just love the weekends!

 

 

Welcome to Holland

How many of you have read or heard the poem, Welcome to Holland? It is a beautiful poem. I first saw this video and heard it  during my training for work. Now when I read it, it hits home a little more. I feel like we're taking a new road on our journey with Caleb. We've been winding down on our own for so long....knowing certain things seemed much harder for him and us...not understanding why. With all this new information this week we finally have the missing puzzle pieces put together. I feel as though we now have answers and we're winding new curves with people who understand him and are telling us that yes...there is something going on inside and we are going to help him get it all worked out. I've been doing a lot of random crying this week. Crying tears of relief, crying tears of sadness, tears of hope, many tears for Caleb..the sacrifice of driving so far each week, the worry over finances, the effort of running the home program for him. But there are a lot of good tears too. There is so much good going on now. We have felt so much hope this week. There are hopeful tears and a confidence and a feeling of encouragement in that we are helping him and he's going to be okay. A very special person has entered his life and ours. She's giving us great tools to help him and us for life. It is only his first week with OT but already we're winding new curves in the road and our home is singing a happier, more hopeful tune this week.

 wagon walk. love those toes.

 

here is what OT looked like for us this week.

arriving. gentle massage and joint compressions (which I learned how to do today) to 'wake' up his proprioceptive and vestibular system.

swinging (caleb really enjoys the 'hot' dog style swing) helps with balance/vestibular

doing polar bear walks (proprioceptive system) he is on all fours walking across the room...pressure going into his hands gives sensory input

running, hopping, jumping, (trampoline), therapy ball (any one of those we've done this week...therapy and at home)

we end session with a table top activity (puzzles or matching puzzles this week) by this time his system is 'woken up' and he is able to sit and engage a little longer than he normally would.

His OT is working on building up his trunk strength (bear walks) when he has the strength in his trunk, he'll be able to sit up straight for longer periods.

This is just the jist of what I understand and see and am learning about! There is so much more and this is just a small part. It is so fascinating to me. I am enjoying the process of learning all these great activities to help Caleb.

It is also challenging at times! He doesn't want to do certain ones and his anxiety level shoots up and he melts down. This has happened a few times. Lucas gets to be in the room with us and always brings him out of it. These two brother boys of mine. I always smile and think how they must have known each other in heaven and told God to place them with one another on earth. They are such blessings to one another :)

I'm so glad it is almost friday!! What a whirlwind week.

(in case you can't listen to the video here is the poem to read)
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

where to begin?

some updates. my mind feels like the ocean, washing up and bringing back. back and forth filled up with so many thoughts for my sweet firstborn. i alternate between relief...sadness...hope...fear...more relief...gratitude...

 i didn't sleep much last night. the early morning hours were spent awake and held by my one calming force keeping me pressed warm to his strength and praying quiet prayers with tears and hope and questions and trust in Him. He is already there I keep reminding myself...if He brings us to it, He'll get us through it.

 we had caleb's OT consult last night. we heard words and things we expected and some we did not, but overall it was eye opening and we left with a wealth of knowledge and tools to help our sweet baby boy.

 Caleb will be starting Occupational Therapy (tuesday was his first day). He'll be going 2x a week and we'll be doing a Home program as well to integrate what he does in OT into our home.

There is a lot to understand but basically Caleb's Central Nervous System (where information is processed) and where sensory information goes is having a hold up in what it is processing; causing him to inconsistently to be able to attend, focus, interact, and be purposeful. OT will help get to the root of the problem by identifying the exact problem for the challenges Caleb faces in gross and fine motor skills and his social anxiety. Doing specific activities with his therapist he'll be releasing chemicals to the brain that will rewire his pathways and build appropriate responses so that he can engage fully in his environment all of the time. He will be able to better self-regulate among other things. It has only been two days but I already feel so much hope and can already see a difference in his moods.

 To give you an idea... at therapy the session started with a massage, swinging on a hot dog shaped swing (where he hit bowling pins with tennis balls) and then he did a bear crawl ( this released dopamine, to help with anxiety) he did jumps on a trampoline, and push offs from the wall, and at the end completed some puzzles and matching (and by that time his body was 'woken up' through sensory input) and he was able to stay focused on the puzzle and matching task for longer.

 At home we are following a home program for him that incorporates a 'sensory meal' and two 'sensory snacks' which basically consists of 'sensory awakening' activities. This will help with his melt downs, his social anxiety, even his drool and eye troubles. It is amazing how all this is exactly what he has struggled with and by doing OT therapy it will tap into all his struggles and he will be able to better cope and adapt to his environment. I know I explained a watered-down version of what we heard and my basic understanding (my scientist hubby understood more) but basically we are getting the help for Caleb that he needs and tools for us to help him. It is such a relief to know that it wasn't all just in my head! I'm so glad I trusted my intuition and followed through. I'm so grateful for our supportive family. I'm so blessed by the friend that helped bring us to the place we are taking him. I know God has his hand in all of this and so while it is overwhelming and scary and we don't know what we are even doing most of the time...He does. And He has lead us to some incredible people who have helped hold our hands along the way. I know without our parents it would be much harder, but they are so encouraging and supportive. And Caleb has an amazing therapist. So the finances and the gas and travel time twice a week and naps and all that...it is working itself out. I'm putting complete trust in my heavenly Father because...He's got this.

My heart hurts with the love I feel for these precious boys of mine. They fill us up with so much goodness.

"enabling children to sprout their wings and fly!" is what covers our binder of info from last night...it is their motto at the place caleb goes. I know that we are on the path for our precious firstborn. He is sprouting his wings and we'll be watching him fly.

*i forgot to mention his thyroid! a long and thorough apt on friday and the good news is that while he is in the abnormal range it isn't too much that he needs to be on medicine for it. We are doing blood work to make sure all the other hormones from the pituitary gland are in good working order but for now we'll keep following up every few months with blood work to make sure his thyroid levels remain okay.

bottled up moments in the sand

the days may long, but the years are short. how do I bottle up a moment that seems to slip through my fingers as quickly as the sand?

how do i capture their care with each other?

 

how do i remember their innocent wonder?

                                                             

  how do i hold on to the way their hair blows in the wind, soft curls that twirl through my fingers, the sweet smell of salt and sand mixed together to make a scent uniquely theirs?

 how do i engrave this moment in my heart? lucas and his little yellow shovel, his bare toes that dig deep in the sand, his chubby hands that catch dirt and his smile that giggles with the wind?

 how do i hold on to the words between father and son...their science like study of sand and water and crabs that scurry round their fingers. the questions caleb asks, his squeals of delight. his child love for daddy hero.

 how do i remember each finger that fits small in mine, each giggle, each smile?

how do i capture these heart full moments in time?

 where love grows beyond

 where treasured moments are made

 they slip through my fingers....warm and fleeting as sand.

i can only tuck them away, those smiles and giggles, blue eyed boys with their daddy in the sand.

 and pull them out, every now in then...these moments that take my breath away. they hurt my heart sometimes...such goodness and love, joy and hope. these little boys are whispers of hope that fill me up with a thousand good things of love.

 

beach day with my boys. always a good thing.