Tuesday, May 31, 2011

Anxiety and cheer

Worry weighs a person down;
an encouraging word cheers a person up.
Proverbs 12:25

Photo notes:
Sometimes, difficult moments turn into days.
And days into weeks.
And we start to feel the weight of the life we chose.
And then...
We find ourselves in the company of those who love us.
Very, very much.
And they understand.
Even when they don't.
And they listen. And reaffirm. And love.
Mostly, love.

That is where we found ourselves this weekend.
Difficult, heartbreaking decisions looming.
Disappointment weighing.
And the arms of our family encircling.

And it was amazing.

Tuesday, May 17, 2011

Catcher's Mitt 101

First, make sure you have the right attitude.

Make sure you know how to use the glove.

Forget the glove, I got this.

Make sure you have a good partner.

Hands out, ready to catch.

Wait a minute. I don't need to see the ball coming at my face.

I can totally catch it anyway.

Tuesday, May 10, 2011

Dear Mommy....oh wait....

So i was all ready for my blog post. Pumped up in the car from a long camping trip with little sleep. My poor husband had to hear all about this blog post on the drive home.
He feels the need to indulge me sometimes when I need to vent.

So I was going to title this post,

Dear Mommy of a child without special needs,

the post would then continue with something all these lines.

You and your child will survive potty training because your child is physically able to go potty. It will not be the end of your world if it takes a while, even a long while.

You and your child will survive when your child is getting some new teeth. All kids do.

You and your child will survive if your child gets a skinned knee.

But then I started thinking, MAN this post sort of reeks!! Reeks and drips of nasty old rotten bitterness and frustration, maybe even a little anger.

Sometimes facebook is a rough place for me. Sometimes its amazing. But sometimes its frustrating to see some of our kids go through such awfully hard things and see you mommys struggling through some really scary moments. And then see the status updates about potty training, or teething and oooooooh please pray for us this is so hard because baby so and so has a stuffy nose. I want to take some of your status updates about UTIs, ER visits, Surgeries, braces, and therapy and just post it on their walls.

But as I got ready to sit down and write this Dear mommy, bitterness post. (and after a nap) I really had to think about the truth behind what I wanted to write and why.

Is it frustrating when friends, family, and people we really dont even know that well complain about things that seem so trivial? ABSOLUTELY! But is it trivial to them. At that moment of potty training, at that moment of endless crying because of new teeth or hearing a baby having a hard time breathing seem like something small? Not to that mommy. Its big! And you know, if I wasnt where I am today. That could be me.

I could be the mommy on facebook with the biggest worry being a scratch instead of scoliosis. I could be the mommy worried about teething instead of tethered chord. I could be the mommy scared about silly things instead of shunts.

And instead of feeling bitter and frustrated maybe I should sit back and be happy for them. Maybe I should be happy for me too.
I can be content knowing that they dont have to deal with the worries and fears we do.
I can also be content knowing that their child is spared some of the things are children are not spared from.
But on the flip side. I know that my life with Toby has changed me. permantly. and in a good way. And on that same note though I dont want my life with Toby to change me to a bitter angry person at everyone who has a healthy child. Wow!! Talk about not being able to keep friendships! : ) Its something honestly, I give to God on a regular basis. Maybe I take it back since I have to keep on giving it over to him. But as long as I keep giving it to God as long as I keep fighting it and not just sit there and right mean ugly posts that might make me feel better at the moment....and then honestly, pretty junky afterward.

I hope these thoughts make sense to you, since sometimes I have a hard time putting my thoughts into a logical progression : )

Kari (aka toby's mommy)

Saturday, May 7, 2011

Happy Mother’s Day (from a special needs perspective) - By Misty Boyd

The following is reprinted with permission from the blog of Misty Boyd, "Broken Body/Whole Spirit."


If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.


Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!


Your SB kid

SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!

Friday, May 6, 2011

Just Stay Calm

This morning I got to take Nate to PT. His dad usually takes him, but I had the day off and love to see all the cool things he's doing at PT. They are just starting to work on walking up stairs without holding on to the railing. He's not totally able or comfortable doing it yet, but with his PT's help, he got to the top of the 5 steps.

He's also working a lot on jumping--that's his favorite thing to practice. Today he jumped over 3 boards in a row. The next thing on their assessment form for him to master is to hop hop hop three times in a row without stopping, and right now he can hop twice. I know he'll get there soon (then again, who really cares if he can hop three times in a row--we're studying for the test on this one).

We talked about Nate's gait--it really is pretty "normal" but his foot lands flatter than it should. She is working with him on standing up by pushing on one knee, instead of the old hand-hand-foot-foot trick we've been doing for so long now. She again told me that he is functioning at about an S1 level, which makes me happy every time I hear it, since he was an L2.

Overall, I was very pleased and proud of Nate's progress. It was a good day.

Then it was time for him to ride the horse, and he worked hard there too. But as he got off the horse, his PT told me that Nate's pants were wet. The horse's blankets were wet too, and they had to make plans for washing them. I was embarrassed. Nate was not. The PT asked if we were cathing or potty training, and I told her that we planned to try potty training when Nate is ready, but he has no interest right now. He'll be 5 next month. We're following the urologist's advice to wait until he's interested. The PT said out loud what I was thinking, "Yeah, but what if he's 8 before he decides he wants to do it?" Yes, and what if the thing that makes him want to potty train is another child making fun of him? I know. I get it.

Then she said, "Well, now that he's bigger, he may need a heavier duty diaper." Gut punch. Special diapers for big kids. No, no, no. I cried on the way home. The old panic came back. All of the great progress I saw just a few minutes ago meant nothing, because I was going to have to buy my child special diapers for big kids.

I prayed for wisdom. I called my mom, but she was in a dentist appointment--how dare she not be there every second I need her! Then I called the urologist's office and asked to speak with a nurse. This is how my brain works when I need advice--Ask God, then my mom, then the medical professionals. :)

I told the nurse that this has been happening with increasing frequency. I will put a dry pullup on Nate, then a couple hours later, all of a sudden he leaks on his pants. It's happened twice in the past week, and several times in the past month. This didn't use to happen. While she was telling me that at least it was good that he was voiding, I remembered something and interrupted her. Last week Nate was telling me something hurt and was pointing to his bladder area. I took him to the doctor to see if he had his first UTI, but he did not. Also, we suspect that Nate is constipated (it's hard to tell with him). Could all of this be related?

Yes. It sounds like he's constipated, and it's putting pressure on his bladder. He's holding it all in too long and then when he does go, it's enough to flood his pull up. Do a good miralax clean out and see if this stops. She wants us to add a daily dose of miralax also, and I don't like miralax, but I also know that if he's chronically constipated, he won't be able to potty train even if/when he decides he wants to.

After I had a plan and a probable reason for the problem and could put the idea of adult diapers out of mind for the moment, I remembered all his progress I saw earlier today. And not just the physical accomplishments but also his attitude and character. He works so hard at PT. When they were working on walking up stairs on his own, he was unsteady and scared. But he tried it anyway, not quite knowing how to do it. When he got to the top of those five stairs, he said, "I'll do it better next time." And he did. He tried again and did it better the next time. That stuck with me all day.

How do I forget the important things? That God has a plan for Nate, and that plan is good. That God uses people's weaknesses to show his strength. And that the physical condition of our kids is not as important as their character.

I also have to remind myself that Nate is not sad that he is not potty trained. He is totally happy with not using the potty, lol. All this sadness is me feeling sorry for myself, not Nate. I like to think that I am just sad for my son, but the truth is that I am sad for myself, and I need to get over myself.

In the midst of my freakout, I see this verse on Facebook (probably by one of you): "The Lord himself will fight for you. Just stay calm." Exodus 14:14

Just stay calm, Colleen. You don't have to figure this out on your own. You can't see the future. But you have the creator of the universe, and the creator of your son, on your side, and he is all over this. Just stay calm. But you might want to see a professional if you keep talking to yourself like this.

Sunday, May 1, 2011


I haven't posted in a while, but it has been on my heart for weeks to share these lyrics with my SB family. They touched me deeply, and I have a feeling that they will touch you as well.

As a Christian, I know these Truths in my head, but sometimes my heart takes a while to catch up. I find that music often helps me along.

This journey we are on with our children, it is a process. Almost a constant grieving. Some days I am a walking testimony of these lyrics, while other days I cling to them for dear life.

Wherever you are right now -- today -- I pray that these lyrics meet you there and fill your heart with a love and comfort only God can provide.

Have a blessed week everyone!
~Lisa (@ Heaven Sent)

"Blessings" by Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home,
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

...And if you want to take a listen: