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.

New tooth

We hit a bit of a rough patch at the beginning of the month because the last of Hunter's baby teeth decided to finally make its appearance. One of the most difficult times of Hunter's life was when he was cutting the majority of his baby teeth. I have never seen such misery. He would cry for hours on end and nothing we did could comfort him. He couldn't sleep and he'd throw up nearly every day from the pain being so intense. Finally we were able to get him some decent pain meds to take the edge off, but it was after several agonizing months of watching him suffer. (It took multiple trips to the doctor to convince them of how bad things were.) My first clue that he was having tooth trouble again was the grinding. That is not a behavior that is typical and it was occuring all the time. Then the gum covering the tooth swelled up like a balloon. I took this picture just a few days before the tooth finally broke through. Luckily we had some loritabs on hand so we were able to moderate his pain. Thank heavens this was the last tooth that needed to come in.
I couldn't get my camera to zoom in close enough for really good before and after shots, but in this picture the tooth is finally through. I'm amazed at what a tough, brave son I have. I love you little man.

Smiles

Hunter has been loving summer. He's enjoyed really good health so far-such a blessing! His seizures have remained moderately controlled on the ketogenic diet so we get to enjoy a happy, alert little boy most days. Sometimes, when Hunter gets tired, his seizure threshold decreases and every so often he'll get super smiley right before he has one. Bry caught some of this on the camera the other night and I thought they were so cute.Best buddies
I LOVE this picture. Even though I know the smile is spontaneous it still melts my heart to see it.
In this last picture I caught Hunter smiling at his friend Caleb. Aren't they cute together? I'm so grateful for every sweet smile.

Bath/nap time

On Monday morning it was bath time for the kids-just the thing to kick off the week, right? Since we had somewhere to be at 11 I was hurrying through the morning routine. Hunter wanted to sleep in (probably cause he knew it was Monday and didn't want the weekend to be over) but I had to be mean and wake him up for his bath. His eyes were open for the 30ish seconds it took me to get him undressed and in to the tub. As soon as the initial shock of getting in the water passed, his eyes promptly closed and he fell back to sleep. Rough life I know. What a cute little sleepyhead he is!

Ben's funeral

"Some blessings come soon,
some come late,
and some don't come until heaven.
But for those who embrace the gospel of Jesus Christ,
they come.
It will be all right in the end.
Trust God and believe in good things to come." ~Elder Jeffrey R. HollandI know this is true.

I'll be grateful forever that I was able to be there and bid Benny an earthly farewell.

~Benjamin Orton~

Benny,

We were supposed to get to meet you this summer. Hunter was so excited. I had to break the news to him yesterday that you had gone home to Heavenly Father. I think Hunter probably has better perspective than I do about your death and feels happy you are now free and with our Savior. My heart is broken for your family.

Especially your sweet mother. She glows when she talks about you.

Even though we never met face to face, we've come to love you deeply through the journal your mother kept on your blog. I'm so glad the Lord allowed us to be touched by you in this way.

We miss you.

I have no doubt you'll be one of the first people to greet Hunter on the other side.

Until we meet again sweet boy.

FOUR

(Hunter's 1st birthday)

Time is a tricky thing.

It seems like an eternity has passed when I stop and think about everything we've experienced since Hunter came into our lives. And then I remember it has only been four years!

Four short years.

I still remember waking up early the morning of his birth. Too uncomfortable from contractions to go back to sleep, I slipped out of bed and went to sit on the couch and read. I ate a bowl of O's. (I regretted that later.)

I remember the final push that brought him in to the world and how his head popped out with a burst of fluids that got all over Bryson's jeans. Which Bry wore, without washing, for several days after.

I remember driving home from the hospital (my eyes as big as SAUCERS I'm sure) and looking to Bry-my rock-for comfort thinking, "We can do this, right?" Instead his face reflected all my own tumultous emotions.

I remember the struggles of breastfeeding. We finger-fed Hunter with a syringe and catheter as he sucked our pinkies until he got the hang of the real deal.

I remember the awful day of his diagnosis. My dad drove us home from PCMC because we were too messed up to be trusted with the task. We stopped at Wendy's for food. Weird that bodies still require us to eat on days like that.

I remember the first time we left Hunter with my mom. It was only for a few hours. When we returned and Hunter heard my voice he started crying hysterically. That's when I knew my baby knew who mommy was and that he'd missed me.

So many moments. I could go on and on and on... really!

This year for Hunter's birthday, instead of gifts, I just wanted people to write a note to Hunter. I bought a little journal (which I intend to use on all future birthdays-it was way better than gifts!) for people to write their feelings/memories about Hunter in. Everything shared was so sacred and beautiful.

Every birthday Hunter has is a blessing.

I know that someday, when I'm missing him on his birthday, I will feel that the time we had together passed by too quickly. That all the moments we shared just weren't enough.

But not today.

Today I just got to enjoy watching his family adore him and it was perfect.

He's with me

Music is amazing. A song can give the most tender feelings form. I wasn't expecting the flood of tears that overwhelmed me when I viewed this on a friend's blog today. I have lived every single line of this song. To steal a bit from my friend's commentary, I'm hoping/trying/praying to be the kind of mother that will someday deserve the words, "She's with me" from the lips of my sweet son.

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares,
And their eyes show only pity as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me
I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me
I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my Lord, cuz you see,

He’s with me

Birthday on the way!

Make an on-line slideshow at www.OneTrueMedia.com

Scroll down to turn off blog soundtrack.

Spring hospital visit

I guess I should have knocked on wood or something after my last post. Last Sunday, Hunter started running a fever with a cough on the side. Monday morning we went to the doctor's but determined to try a steroid to calm his inflamed bronchial tubes and frequent breathing treatments instead of admitting him to the hospital. We made it two miserable days before we were back at the doc's on Wednesday evening. The steriod was totally ineffective. Hunter had been extremely uncomfortable and agitated day and night. I was hesitant about going back to the doctor's a second time. Hunter wasn't really showing any of the usual "red flags" like a high fever or runny nose (he also got a chest x-ray on Monday that was clean). But his continuous cough was horrible and causing him to throw up. Our pediatrician, Dr. Johnson, (who is awesome btw) suspected that something viral must was going on, so, off we went to the hospital.I am so glad we were in the hospital that night. Hunter needed to be deep suctioned (that means they stick a catheter down his nose and into his nasal cavities to get out the secretions he isn't moving by himself) and required more oxygen support during the night than he's ever needed before. The poor little man was miserable. The prior evening, while we were getting settled the nurse blew out three of Hunter's veins before they got the IV in. That has also never occured. Usually, he has really easy veins and they get the IV on the first try. Getting the IV in was tough for me to watch.Dr. Johnson's hunch about it being a virus proved correct. He tested positive for a virus (sorry, can't remember the name) that the nurse told me they see a lot of in children this time of year.

The cute, green-flannel blankie in these pictures was waiting for us when we arrived, courtesy of some kind soul who made them for the kids in the Peds unit. Hunter snuggled it the whole time he was in the hospital.

Hunter's crazy sister came to visit him a few times while he was ill. He loves her so much!

We got to come home Saturday afternoon. Hunter is still on oxygen and we are (attempting) to handle the suctioning. He's headed in the right direction and I'm hoping he'll recover fully before his birthday.

On a side note, I need to acknowledge the amazing man I'm married too. He spent two of the three nights at the hospital with Hunter. All of the nurses were in love with him after watching the tender, loving care he gives our boy. I am ridiculously lucky to be married to someone who is tireless in his support of me and in the care of our son. Whether we are in crises mode or just our normal day-to-day routine, Bryson is as hands-on as they come. I'm so grateful I can count on him. I love him dearly. (Even that glowing commendation really doesn't do the matter justice, but I think that is sufficient mushiness from me.)

Because it has been forever...

I just want to take this opportunity to say how grateful I am for the health Hunter has enjoyed this winter. What a miraculous blessing! Especially when you consider he started preschool in January. Keep the streak alive little man!My precious babies. Wild and crazy hair before the spring buzz.

Our cute neighbor Will with Hunter.

Hunter, Grandpa and Eleyna on Christmas morning. Look at that sweet smile! He was excited for his presents.

Preschool

We've been working to get Hunter in preschool since April. Last Wednesday, all of that effort paid off and Hunter attended his first day of preschool! His teacher's name is Ms. Deby and I really like her. There are nine children in the class including Hunter. He is the only child that has a physical disability. When we walked in to the classroom the other children were very excited to meet Hunter-it was really cute! I stayed the whole time that first day. Hunter did great. He attended again today and this time we just dropped him off at school. My little boy is getting so big! I hope preschool is a continued success and that Hunter can stay healthy throughout. It sure is hard letting go, even just a little bit, but I think it will be good for both of us. Love you buddy! Mom and Hunter in front of the elementary. Eleyna sure loves her brother!

Proud sister and daddy with Hunter.

Kogan

Hunter,

Today I found out that your sweet friend Kogan died last month. You probably don't remember him too well because we became acquainted with his family right after you were diagnosed and you were still just a baby. Meeting Kogan and talking with his parents helped us come to terms with lissencephaly. Kogan was such a handsome, precious little boy! Knowing him gave me and your dad a preview of what you would be like when you were older. It helped us to not feel afraid.

Sandy, your new vision therapist, happened to ask me at school today if we went to Kogan's funeral. It was an abrupt way to hear such sad news. My heart has been heavy all day. Sometimes, when I think about life without you, I feel like I'm being sucked into a black hole of sadness. So I try not to think about the future and just focus on the present. On days like today though, it feels like that black hole is present in our house. I do my best to ignore it, but its presence is so overwhelming it's difficult to ignore.

Tonight I snuggled you to sleep. It felt good to watch you breathe in and out and kiss your rosy cheeks. I'm glad you are still here. I love you!

Love, Mom

Kogan Kilmer 2003-2009 The crown without the conflict.

Cold and prickly

Hunter hasn't been feeling very well since Christmas. He has a cough he can't kick. He isn't sleeping good at night as a result. He's been throwing up A LOT too. (You'd all be so impressed by my laundry skills!) However, I can't decide if the vomiting is due to the same 24-hr flu bug that Eleyna had, but it just hit him harder, or if he isn't adjusting to the changes in his Ketogenic diet.

It is exhausting always trying to be Sherlock Mom.

He is supposed to go to his first day of special ed preschool this Wednesday. I'm really nervous about the whole thing. I hope it is a positive experience for all of us. For now, he is only going to go for an hour, one day a week. If he tolerates it okay then we'll increase from there. I'm excited for him to have some new experiences and meet some new friends.

Hunter and I are both tired today.

Over New Year's weekend we rented a cabin in Timberlakes with Bryson's dad and his sibs. Since the roads to the cabin were super icy, getting up the mountain with the snowmobile trailer took forever. Meanwhile, I've been holding Hunter in my lap since Heber because it's bedtime and he is too tired to sit in his car seat any longer and he's got a full diaper which is soaking through his jeans. There's no where to change him in a car stuffed to the brim with luggage and my arms are about ready to fall off. So while we make slow progress towards our destination both of us are feeling increasingly uncomfy and stressed. (He starts to cry the last little bit.) By the time we arrive, I'm biting people's heads off and am in a generally unpleasant mood.

Then, the whole time we're there I'm WORRYING because I knew he wasn't feeling great when we left and now I'm sure the illness will hit with full force. (Which it didn't, thankfully. But still, the worrying!) Since the whole point of being at a cabin in the winter is to play outside in the snow, I'm inside with Hunter while everyone else is outside. I don't mind this too much though because I brought a book to read. Still, it gets me wondering why I went to all of the trouble in the first place when we could both be doing the same thing at home. Needless to say, two days away from my house with a moderately sick boy was enough to convince me that trips/vacations are just going to have to be different from now on. It makes me sad, but I think the only solution is to have either me or Bry stay home with Hunter while the other person goes on future trips with Eleyna.

Sometimes I guess there just aren't any great solutions.

Did I mention that I hate winter? And that I'm tired today? Bad combo.

Sorry this wasn't a very "warm and fuzzy" post.