Big brother

I love this picture! Rock and Hunter have a sweet relationship already. I lay the baby next to Hunter a lot when Rock's fussy and I'm trying to finish something before I have to nurse. Unless Rock is really upset it works like a charm and buys me a couple extra minutes. Rock loves snuggling up to his big brother. Hunter handles it pretty peacefully as well(being next to a loud, wiggly little person is a lot for Hunter to absorb without stressing).

We buzzed Hunter's head a few weeks ago. This is really the only hair style that works on a kid who is lying down or in a wheelchair most of the day. Every time we cut Hunter's hair I'm shocked by how old my boy looks. He's wearing some of the new clothes he got for Christmas in these shots and that definitely adds to him looking old. He's getting really tall; still as skinny as ever though. He's such a handsome, dear little(big) guy.

Amazing???

Another very special mom posted this on her blog after her daughter's funeral last week-

I'm nowhere near perfect. If I'm strong it's because of the last 5 years. If I'm handling it well it's because I believe in heaven, and because I'm somewhat numb. And it was very hard watching Lily hurt. And I have A LOT of help and support. But you should know I certainly don't feel "Amazing".

This was my comment-

I understand what you're saying about not feeling AMAZING. I kind of hate it when people say that to me. Amazing isn't the right word. Strong is. Strength is the result of getting up day after day and shouldering a heavy burden, until you somehow (with God's help) develop the muscles to carry it without struggling so much. We all need people who love us and who can be strong for US. I'm grateful for the people in my life who make ME feel like I can have some moments of weakness for myself. That allow me take a break from being so dang strong all the time. Because you'll always do what ya gotta do, but sometimes it is oh so good to not do it alone.

No one wants to live on a pedestal. They are friendless and hard to balance on. I am deeply grateful for the people in my life that understand this and allow me to be just an average human being who needs help sometimes.

A little blue today

I need to opine.

Being Hunter's mama is tough stuff some days.

Especially when my support system (i.e. my mother) is on the other side of the globe.

It has been a LONG week.

An acquaintance of mine lost her baby girl a few days ago. I didn't really know Erin and Lily that well but my heart has been tender since I heard the news. I'm hurting for Erin, a mother whose arms are longing for the warmth of her sweet baby.

Every time a special child goes home to our Heavenly Father I'm reminded that my days with Hunter are numbered.

Sometimes I forget. Seriously. I start thinking that I'm just another mom. I look around at some of the women in my midst and marvel at how put together they are, the trips they get to go on, the time they seem to have to pursue their interests, and wonder how they do these things. Grocery shopping or a visit to the treehouse at the mall are major endeavors for us.

That just doesn't seem as epic for anyone else and it baffles me.

But then something happens and I realize that I'm not just a normal mom. "Normal" mothers probably don't worry if they miss a couple weeks of blogging, because most likely a friend's child won't decline and pass away in that time period. Normal moms don't hang out at the suctioning clinic at the hospital or chase around looking for suctioning catheters in their child's size (or have to rinse out suction cups full of the nastiest mucus you've ever seen-I hate that, I really do). Normal moms probably aren't overwhelmed at the prospect of trying to just walk across the street to their church to play basketball with friends because they've never tried to push a wheelchair with one arm and juggle a baby carrier and a crying two year old who (of course) suddenly wants to be held in the other arm.

You get the idea.

It's frustrating when the one person I would feel comforted by being with can't get together because her own sweet boy is seriously ill.

When we first discovered Hunter's condition everyone was so concerned for us. Everyone wanted to help.

It's funny how quickly that wears off. Even though each and every day is still tough people lose interest after the "crisis" is over. I think people start to think you are/should be "over it". You're fine now, it's just your life. They start to think you're just "normal" too.

They aren't privvy to your non-normal moments. Only you are aware of those. You and the Savior.

And the husband, who tries really hard to be understanding.

Thank heavens for that.

I promise not to be depressing next time.

Tender words

I read this on the blog of another special needs mom and had to share.

"Would you like a boy or girl?" and I reply
all blushing, body blooming like a rose
"It doesn't matter much to me; all I
want is ten fingers and ten fine strong toes-
A healthy baby with a lusty cry."

Such strange conditions, idly placed upon
our love of children born beneath our hearts.
As if we would not love a little one
that's formed awry, confusion in it's parts-
or treasure legs we know will never run.

Can you not stay, my baby? We'll repair
your damaged body, if you'll but live.
I fold myself in faith, hide from despair
Remain awhile--we have so much to give
each other--so much joy to share.

I mourn each problem but do not forget
The spirit held here by your mortal clay
I know that all will be restored--and yet
beg for this sooner-can't it be today?-
and weep for hopes all shattered, dreams unmet.

You're such a welcome burden, so I cry
to our shared Father, He who understands
and cares for me and loves you more than I
know how. Your fragile life rests in His hands.
And I? I'll raise you now...or by and by.
--Louise Helps

Old pails

Some of you might remember this story from Pres. Monson's talk at the Relief Society meeting a few weeks ago. It touched me to the core.

A woman by the name of Mary Bartels had a home directly across the street from the entrance to a hospital clinic. Her family lived on the main floor and rented the upstairs rooms to outpatients at the clinic. One evening a badly disfigured man came to her door looking for a place to stay the night. He'd been searching for a room since early that day but surmised to Mary that he guessed it was because of his face that he'd had no success. Mary found the man a place to sleep-even though all her rooms were filled. During the ensuing years a friendship developed as the man continued to go for treatments and stayed in Mary's home.

(Now I will quote from Pres. Monson's talk.)

"After the man passed away, Mary was visiting with a friend who had a greenhouse. As she looked at her friend’s flowers, she noticed a beautiful golden chrysanthemum but was puzzled that it was growing in a dented, old, rusty bucket. Her friend explained, 'I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn’t mind starting in this old pail. It’s just for a little while, until I can put it out in the garden.'

"Mary smiled as she imagined just such a scene in heaven. 'Here’s an especially beautiful one,' God might have said when He came to the soul of the little old man. 'He won’t mind starting in this small, misshapen body.' But that was long ago, and in God’s garden how tall this lovely soul must stand!"

My thoughts were immediately turned to Hunter. He is an especially beautiful soul that is starting out in a handicapped body. I know that one day in our Heavenly Father's garden he will stand tall and everyone will see him as he really is.

Back to school

My sweet boy started preschool today. I think we're going to try and send him two days a week this year, and he might ride the bus! I'm crossing my fingers that he's at least healthy through the fall so he can actually attend. We went as a family to drop him off this morning. He was pretty grumpy about having to get ready so early. Eleyna, on the other hand, was very excited and walked right in to Hunter's classroom and made herself at home. We had to practically drag her out of there. I think it may take Hunter some time to build up stamina for school. After he got home and was comfy on the couch he slept the entire afternoon away. Seriously. It was cute how exhausted he was. I'm so proud of my oldest child. He's such a brave little guy.Hunter, your sister was so excited for you today.
The fam (Bry, the camera's over this way!)
Check out Eleyna enjoying storytime with the other kids on the rug.
Cute classroom!

The stroller

This is Hunter's new ride. I wish I could convey what a blessing it has been, but as usual, there just aren't words. The stroller weighs about half what his wheelchair does, and now that I'm nearly eight months pregnant that makes a big difference in my day to day functioning. Our new system is the stroller stays in the van and the wheelchair stays at home. I know it may seem trivial to some of you, but I know that others of you understand that not having to constantly load and unload the wheelchair from my car (in addition to my 40 lb. child) really makes life more doable. This past Sunday evening, we drove up Provo canyon to escape the heat. The stroller is great for activities like this since the wheelchair doesn't do well "off road". Doesn't Hunter look comfy? Thanks SO much to the sweet person who made this possible for our family!!! You are an angel.