Mothers

If you have a mom, there is nowhere you are likely to go where a prayer has not already been.  ~Robert Brault

A Mother's love is instinctual, unconditional, and forever.

Unknown

"Making the decision to have a child-it's momentous. It is to decide forever to have your heart go walking around outside your body."
--Elizabeth Stone

“My mom is a never ending song in my heart of comfort, happiness, and being. I may sometimes forget the words but I always remember the tune."
~Graycie Harmon

Matthew Time

Untouched

I feel like the luckiest mama in the world

to have a little boy who is so untouched by it.

It is truly a blessing to care for someone so pure.

I love you, my Caleb.

Lucky Day!

Happy St. Patrick's Day! 

Caleb listened to some Enya this morning to celebrate!

Tooth Fairy Surprises

The tooth fairy left Caleb a bright slinky to use for vision time and an Easter Egg tree!

Tooth Fairy

Caleb lost his first tooth today!  Oh I am just GIDDY!  Every time I see that little hole in his teeth I can't help but GIGGLE!  Who would have thought my little boy, who was given so little hope, would be visited by the tooth fairy? 

I am filled to the brim with GLEE!!

Visual Clutter

One of my favorite sensory tools for Caleb is the invisiboard. The website states:  Block out distractions for students with Cortical Visual Impairment.  This 48 by 30 inch, tri-fold board eliminates visual clutter with a solid white, slick material on one side and a solid black, Velcro compatible material on the other.

I love using this board with Caleb.  I can surround him with a black background and give his eye the opportunity to focus on one thing.  Right now we are focusing on items that are mostly yellow or reflective.  

Just like the invisiboard helps me to reduce visual clutter for Caleb... Caleb reduces worldly clutter for me.  He teaches me to be more reflective.  He teaches me to focus on what matters most.  

Thank you Caleb, for teaching me to truly see.

You can find more information about the invisiboard here and here
For some more great sensory ideas, visit Heidi's adaptations blog 

My BYU boy

Psst... Did you hear BYU basketball is ranked #3... and they are well on their way to a possible #1 seed in the tournament?

My BYU boy isn't a bit surprised! 

Caleb is still trying to feel better, but we couldn't resist a quick walk on a sunny day!

 

Time with cousins is time well spent!

Caleb's head fits into Dallan's hats perfectly.

That's what happens when your head is full of heavenly thoughts!

Go Cougars, and Go Caleb.  

You're always #1 to me!

Rah Rah Rah!

Delicious company

Last I was able to sneak away to spend some time with these lovely ladies and their special children. Caleb wasn't feeling well enough to venture out, but hopefully he'll join us next time! It was wonderful to enjoy such scrumptious treats and delightful friendships.

Thank you for being dear friends and for sharing your children with me!

Simply Love

The other day Matthew was snuggled up to Caleb and said,

"I just love being by Caleb because he makes everything slow down."

I love how Caleb teaches each one of us how to slow down and simply love each other.

Families are Forever

Having Caleb has given me the wonderful opportunity to meet other special children.  Whether in person, through blogging,or through e mail, my heart is wrapped around these dear families.  We can't always meet each other in person because many of us stay close to home with our oxygen tanks and feeding pumps, but our hearts are knit together in unity and love.  And so, when one of these sweet mamas has to say good bye to their little one, my heart breaks with them.  Whether I know her from her comments, e mails, or special visits, my heart aches.  So today, my heart is tender as I love Erin, Bekah, Becky and  many other mamas who've recently said good bye.  I hope you know that my heart is wrapped around you on tender days, and always.

Happy Valentines Day!

Dear Caleb,

Happy Valentines Day my sweet boy

Words cannot ever truly express the love I have in my heart for you.

I love how you for remind me each day what Heaven feels like.

I love the little ways you show you know I'm your mama.

I love how you smile at me first thing in the morning when you hear my voice.

I love how you are so patient with your little body.

I love how you are true to your mission.

I love how you are a light to all who know you. 

I love how you are so pure and untouched by the world.

I love how you lick your lips when I put fruity chapstick on them-

and I love giving you fruity kisses.

I love you just the way you are - from your fluffy little feet to your wee little wink.

I love how you fill my heart to over flowing.

I love you forever,

Mom

Staying Cozy

This time of year is tricky for Caleb, so we're keeping him cozy and comfy at home while his lungs try to feel better.

Caleb finished his antibiotics for pneumonia a few days ago.  I took him back for more chest X rays on Saturday, and his lungs had improved a bit. His respiratory rate is still elevated, and he needs extra oxygen and suctioning.  That isn't uncommon for Caleb, though.  He usually needs lots of extra time to over come illness.  He has good days and tricky days, but we're home all together and that's our favorite place to be!

A surprise from down under!

Dear Noah, 

Thank you for the Tasmanian Devil all the way from  Tasmania!  I love it a whole bunch!

Love, 

Your buddy Caleb

On the mend...

Caleb seems to be on the mend. He still needs extra suctioning and increased oxygen, but his face lit up when he saw a big red Elmo light up our TV screen. For my little boy who has cortical vision/blindness... I think that's a great sign, Don't you?!

Meet Winkie Bear

I Hope he tickles you 

as much as he's tickled us!

THANK YOU!!

A Love/Hate Relationship

I have a love/ hate relationship with Mr. Vent.

During one of Caleb's hospital stays for pneumonia, we were encouraged to bring him home on a ventilator.  It was to be used primarily at night time to give his lungs a rest.  I agonized over bringing it home. I wasn't sure that we wanted things to head in "that direction."

I hate that ventilators so often coinside with end of life. I hate that it might it mean making hard decisions in the future...

We carefully considered our goals with Caleb as we made our decision:  

We want him to feel joy in his body.

We want him to be at home with us. 

We decided to bring the ventilator home hoping it would help us  reach those goals for our little boy.

Even though I hate what a ventilator sometimes stands for,  I've developed more of a love/hate relationship with it.

Caleb has been battling pneumonia this week.  I love that we've been able to stay at home.  I love that we have the tools we need to help him recover in a cozy loving environment.  He had a rough few days with a high respiratory and a high heart rate.  He had blood coming out of his trach for almost 36 hours... yet, rather that spend the week or two in the hospital, we've been able to take care of him at home thanks to our ventilator.

We aren't able to stay away from the hospital for every illness, but our many machines have made it possible to stay at home more often.

 Thank you Mr. Vent, for being the friend that I love to hate.

Tunes

One of my favorite things is Caleb in headphones listening to some tunes!  The selection of the day... The MY LIFE soundtrack--- I used to listen to it every night in college when I was going to sleep.  Looks like it had the same effect on Caleb!

Parenting: Touching the Hearts of Our Youth

Shared victory

Matthew has been playing basket ball!  He even scored a basket in his last game!  Caleb is the first person he finds when he gets home because, after all, a victory is much sweeter when it's shared with someone you love!