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.

brother boys.

A Brothers Love
A Brother is a special gift
Sent from God above
For us to cherish daily
And fill them up with love
In the beauty of a brother
It's so plain and easy to see
Just how wonderful they make your life
And how they were meant to be
Now what is it that makes a brother
It's quite difficult to say
Except he is the reason
Why your sun shines everyday

--Paris

Oh my sweet boys. May you always be best friends. I love you both so much. To the moon..and back.

We have Caleb's pediatric endocrinology apt. tomorrow and his OT consult on Tuesday. I am hoping by tomorrow and next week we'll have a better understanding of what is going on with his thyroid and his sensory stuff. It has been so hard to wait, but I'm glad we're finally making progress and will be learning from knowledge professionals.

My mom is on her way up right now :) I'm so excited for some girl time this weekend. We're having a Girls' Night Out (at my house) candle party and we are going to a Beth Moore conference on Saturday together with several girls from my bible study. I'm so excited to have a day with just my mom  and to be surrounded by other faith filled women and to be hearing beth moore speak! (well she'll be broad casted in/not in person :)) anyway dave and the boys have some 'boy plans'. And Dave and I will get to have a date night while my mom watches the boys Saturday night. I love date nights with my hubby :)

9 miles this weekend (alone again!) but now i have more confidence in myself to run alone....even though it is much easier to run with my running partner.

And since it is Thursday...I'm so excited Grey's Anatomy will be starting back up in a couple weeks. We really don't have many shows we watch, but this is the first show we watched together and we still watch :) Love my Thursday Grey's!!

Happy Thursday :)

in an instant.

i lost almost 5 months worth of pictures on the blog. gone. i hit one button by accident not realizing it would delete an entire album of blog pictures. (it took me a few weeks to even realize what i did) after a really bad day at work and emotions already high i sat down and thought i should take inventory of the damage. big, gulping, heavy sobs took place. this is my place. my afternoon half hour of journaling and documenting of our daily lives. i do it for me probably more than anyone. and i was heart broken. the sad news was there was no easy fix with a click back of a button. the happy news is i'm married to an incredible guy who happens to be more technological than myself. he told me how to fix it and between me spending an hour or two and him spending an hour or two we were able to re-do the terrible damage. there is still half a month left to be done....i still have swirling thoughts in my head of how to put this blog in a book or back it up on the computer so it doesn't happen again...also...i was faced with the fact that nothing...nothing...but my own memories can stay permanent. blog/photo albums/picture frames. my picture love was put in it's place...in a hard/sad way. i wanted to stop blogging altogether so i wouldn't feel the pain of losing something like that again/should it happen again ;( hope not!...but that is like taking away something i love too much to let go of....and i just couldn't bring myself to do it.

so i continue...with a heavier heart. but with relief too. that the damage was fixed. and even more love and appreciation for my sweet husband who was able to fix it for me. this blog is my way of holding on to cherished moments longer. i can look back at not just pictures, but my thoughts and feelings. and when i realized almost half of lucas' pictures were gone, well it was pretty devastating. i know it is so small...i have many other more important things in my life...dave and the boys being the top, and putting God first above everything is really my number one priority. blogging falls well below all those!! but it was sad to know i had lost almost half a year's worth of pictures!! (i mean i have all my albums and frames, etc...but pictures with words...well there's a lot more meaning to that!) anyway. i've started a prayer journal this week and i'm glad to have something else to write down my daily prayers and thoughts. (i've been reading power of a praying wife and power of a praying parent. wow. let me just say, pretty life changing!)

 

so here are some pictures from our day.

 lucas almost always wants to be part of caleb's play.can you tell? i love these puzzle sets. they are wooden and have colors and shapes in simple patterns. they are great for caleb's fine motor development and there is always much conversation that follows as he works on them.

 creating music on the wall with a wooden spoon.

 more puzzle play

sweet sleep.

my favorite memory of the morning was 'cuddle time' before naps....caleb was talking to lucas and said "um, excuse me lucas, can you please cuddle on the bed with me?" and then both their heads flopped together and smiles followed with giggles and snuggles.
i love listening to caleb say his prayers as well. i wish i could record forever his words, the sing song of his voice, and the precious phrases he says. goodness he is sweetness wrapped up in toddler hood. each moment is so very precious to me with my sweet boys. i love watching them grow and learn, independent from one another....and together as well. they bring so much joy and love to our lives and it is the greatest blessing to share in it with my best friend and love, my sweet hubby.


happy wednesday!!

monterey

we spent sunday in monterey.

 nothing i love more than digging my toes in the warm sand and watching the water splash on the shore....well, i take that back...i'd love to be in that splashing shore water (but it's a little cold all the way up here)

 lucas loves it too. can you tell?

 sunday was long and wonderful. We had a full day in Monterey. Saturday was productive. Running, Grocery shopping, napping, and Church. Sunday left us with an entire day at the beach stretched out in front of us.

 We rode our bikes. Played in the sand. Ate some lunch. And I got to do a little shopping while Dave kept the boys busy. It was glorious.

  yes...i did say shopping....(me...the girl who hates shopping for herself!)

Okay. I'm going to go on a little shopping tangent here to explain. let me first say...i don't enjoy shopping (oh wait...i think i already mentioned that). Secondly this might be too much information. so only read if 1. you're a girl. and 2. if you'd like to here my random story. Here goes....
I highly recommend to any girl out there the following.... 1. if you haven't done this...get your girls (as in your boobs) fitted. i think my inspiration came from a. my sister who had a great experience at nordstorm (but that's a little out of my price range) so my friend said she had just as good of one at victoria's secret. that's where i went. and b. this blog here. i always laugh when i read her stuff. this post is hilarious! she might be onto something here. so since i was preggers for 9 months and am still nursing... my poor girls haven't felt a comfortable bra in well over a year...okay let's be honest it has been at least 4 years because i only had a two month window of normalcy before i got pregnant with lucas after I stopped nursing Caleb. my point is this. i went into victoria's secret not knowing my true size (and i honestly can't remember the last time i actually felt comfortable in a bra. i just never knew how to find the right size or right fit! pretty sad right?) ...i came out knowing and feeling like a new woman :) 20 minutes later...and 40 dollars spent. (which is a heckaofalotforabra! in my opinion. but the feeling of comfort for the first time in my life! that my friends...priceless!!! totally priceless!)

my second shopping experience was for running shoes at a real 'running shoe store' once again recommended by a friend and while i didn't walk away with the expensive shoes...i know what type of shoe to get now for my feet and i'm in the process of getting them elsewhere a little cheaper. (i think i might have had a life changing shopping experience my friends)

anyways. i hate shopping....and talking about it is almost as bad. but sometimes it is worth it to get those necessities. i'm a comfort girl so that means the most basic anything. nothing fancy and i hardly ever shop for myself these days unless my mom treats me :) but there are some things i've learned....it is worth it to have the right fit! if you know what i mean. and i have to say, all made possible because dave entertained the boys and i snuck it in while they lingered over lunch and played outside farmers market. a mother is the best multi-tasker i've learned!) enough about that.....(cause really...it won't happen again for a very long time i'm sure!) moving on....

  here are my sweet boys.  we tasted the best.fruit.ever. at the monterey farmers market. it made me want to have a farmers market in our backyard. which i guess we kind of do with all our fruits and veggies growing this summer....but there's just something about strolling through a farmers market with fresh fruit in your mouth :) summer. summer. summer.

 and my last story...lucas was very tired by the time we went on our bike ride. we thought he'd nap in the trailer with caleb....not so much. instead he cried. which is rare for him. i wanted to write this down so i could remember for myself. it was just so sweet. i was riding behind them and i just kept watching their little heads all bunched  together while caleb tried to tend to lucas. he'd feed him grahm crackers....sing to him.....read to him....hold his hand....it was precious. and then lucas got hysterical, poor guy which really made caleb nervous. he kept telling dave 'daddy lucas is really crying daddy!!'  he was so concerned. he always takes such goood care of lucas...when he isn't pushing him or yelling at him because lucas snagged a toy that is :) i just love how much they care for and love each other. so sweet.

we had a fun day :) oh how i love the weekends. mondays always come too soon. especially now that i'm working monday and wednesdays :( but-not to end on a bad note....

i'll just leave with a picture of lucas loving on the sand ;)