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Showing posts from July, 2012

I will never get it

Finally got word back on the iron studies for the kids.  Shelbie will definitely be getting iron transfusions, IV style, Sam is going to try pills (which bugs me a bit) but his studies aren't a whole lot better than Shelbie's and Spencer, who's marrow is also nearly depleted of iron stores had normal  iron studies so he will not get pills or IV transfusion.

How the heck does that work?  I'm at a loss and surprisingly, so is the doctor.  Samuel never complains about having enough energy to do the things he likes to do.  Spencer lately has been dragging around so fatigued and for the past few months, he begs me to do something to give him his energy back.  I was sure that the iron was the problem and explanation for his crummy feelings.  Doesn't look like that is the case at all. 

When I told Spencer last night that he wouldn't be getting iron because he was 'normal' he got pretty upset.  "How can I be normal?  I feel like crap all the time!  This i…

Emma Smith - Never Had an Ordinary Day

I love this song and today I want to pay tribute to all the moms out there who carry the weight of the world on your shoulders.  All those moms who care for sick kids, who's children were taken to soon.  I dedicate this to my friends who are struggling, watching their husbands battle cancer, moms facing the end stages of cancer themselves with beautiful children they will leave behind, a friend with Cystic Fibrosis waiting for her second double lung transplant. 

This is for anyone who has anything but an ordinary life. 

Happy Sunday!

Psychologically Speaking

Wednesday was our day at the Psychiatrist's office.  We have to go every three months for medication regulation and refills.  Dr. Denny is one smart guy and gets along well with the kids. 

Psychologically speaking, it's been a tough month.  There's been alot going on medically and a lot in all the other areas of my life.  I've been burning the candle at both ends just trying to make things work.  Being tired and stressed is not a great combination. 

I've really struggled as I look for work, to think about leaving the kids for 40+ hours a week.  The reality is, I really need a flexible job.  Someone is sick every single week.  We rarely experience weeks when no one has to go in to the clinic.  Then there is the emotional side, the mother in me that is afraid to leave them in case something happens.  It sounds completely lame, illogical and a pointless.  It's not like they are 3 years old anymore.  I have two adult children and a teenager. 

I had a job intervi…


It's really hard to keep your bearings in the world of Shwachman Diamond Syndrome and Mitochondrial Disease.  It's easy to trip up on the overgrowth and gnarly roots trying to find their place.  It's easy to get lost in the dark as the storms of chronic illness swirl around you. 

The journey becomes just trying to take that next step but joy just hasn't caught up yet and your only traveling companions are fear and its cousin hopelessness.  Sometimes a little light can be found filtering through the canopy of chronic illness. 

Oh, how I love those moments.  How I wish I could just bottle it up and save it for a day when the journey gets arduous. 

Tonight, a little light filtered into my life.  It doesn't take much really, just a flicker can reignite enough of your spirit, you can go on.  In the light, I could see that I haven't been thankful enough for my life, for the little mercies that make a difference.  Sometimes I'm too busy worrying to see the lit…

Couch time (aka...therapy)

This is strictly a cathartic post and it's going to be long...a mini novel. I am writing it just to sort things out for myself; vent... basically, I'm having a pity party for myself.  Maybe it's not exactly a pity party but I am pretty stressed out and tired tonight and I am so tired of everything in my life creating a bind of complication.  So, my inner turmoil probably won't be that interesting to anyone so feel free to wait for a more exciting post like iron infusions coming up. That will surely be exciting.

So, I hate Shwachman Diamond Syndrome.  I HATE it.  I hate that it has the gall to make me feel like I can never relax.  I always have to be on my game.  I hate that I have to keep everyone together emotionally and physically.  There is never a break. I hate that the threat of losing my kids is always, every single day of my life looming over my head.  If I'm not worrying about stupid bone marrow failure and the number of abnormal cells invading their innoc…

It's back

Sam's been getting by pretty good since his surgery a few months ago but last night was the end of that.  His inflammatory bowel disease has flared up again and he is back to the nasty, mucus and blood filled stools.  I debated taking him to the ER last night but decided we will try to get through the weekend.  We will be at the oncologist's tomorrow morning so hopefully it won't get any worse until then.

Poor kid, it is really scary for him when this happens.  I can't imagine how hard that would be.  We really need to get to Boise to see our GI doc but it's hard to find a time when we can go and paying for another trip makes me sick.  Maybe they can make an adjustment in his meds and things will turn around. 

You never know when things are going to turn for us, for good or for bad.  It happens when we least expect it.  I thought this medicine the boys were on for IBD would keep them out of harms way but I guess not, unless something else is going on.  It's a …

When they were little

When the kids were little, it was way easier to lie to them and I was a great liar.  I didn't have to do it very often because they were busy being kids and not really worried about what was going on in their life from a health standpoint.  We went through a great period of time when everyone was pretty healthy. 

Now that they are older and more mature, they realize that there is more to life than what exists in the backyard.  Doctors speak to them and speak in ways they mostly understand.  They have mastered the art of Googling just about anything they want to know more about.  That means, they can read a blood test and pretty much figure out what is going on. 

Earlier this week, I announced that bone marrow biopsies were in and everything was fine.  I was hoping that would appease them and they would become occupied with something else in life.  It's not easy having these conversations with your kids.  At dinner on Tuesday night, Spencer said, "I want to know what you…

Can you imagine?

Can you even imagine what it would be like raising these kids?  Can you even imagine what a month of medical bills in this family looks like?  Can you imagine how hard it is to have at least one person sick every week?  Can you imagine what it's like watching yet another procedure, another set back?  Can you imagine how it feels to know that there is a high probability that you will live longer than your kids?  Can you imagine doing this all by yourself?

Can you even imagine what it feels like to live in this family?  I'll tell is humbling. 

I never imagined that I would be the kind of person who would be dealt this deal.  Me, the little girl who screamed hysterically when she heard a siren.  The little girl who wasn't allowed to go see my sister when she got her tonsils out or my other sister when she had a hernia repaired because she just couldn't stop crying, it made her so sad.  Now look at me.  I am pretty comfortable in the hospital, it's like my ho…

The verdict

What a horrible day!  I feel like I ate a big bowl of crazy for breakfast this morning.  Nothing sets me off more than money problems.  Second to that is the fact that I've been fighting with my insurance company to cover some of Shelbie's bills and my arthritis doctor bill that was over $1500.00.  Then, I cleaned a bunch of houses today and all but one person had an excuse why they couldn't pay me today.  It's so frustrating and I am down to nothing in my bank account which means no bills are getting paid until I get paid.  So, most of the day has been spent in a panic trying to figure my way out of this mess. 

I came home, after a mega sized melt down in my car on the way home from my last cleaning job, to find the kids' bone marrow results in my inbox.  Ughhh.  It's going to be really hard to explain but here goes. 

First off, all the kids had neutropenia, Shelbie and Sam had Leukopenia in addition to a low number of neutrophils.  Neutrophils are immature …