Updates Page 9

Posted:  5-19-10, by Leslie

Just a quick update.  Our son, Quinn, celebrated his 11th birthday on Saturday.  Curt and Quinn took the afternoon on Sunday and enjoyed a round of golf.  Curt's muscle weakness only allows him to do putting on the greens, but they had a wonderful time.
 
Sunday evening, Curt aspirated some fluid into his lungs and was taken to the hospital by ambulance.  Thank you, Eric, for rushing over to watch the kids and for our neighbors who came over immediately to see what they could do.  As hard as this is, we really are so grateful to have all of you who are so willing to be there to help us.
 
Curt was admitted into Sparrow Hospital Sunday evening and is still there with pneumonia.  The doctors' are working very hard to help him get past this and I can't explain to you how caring the entire staff is at Sparrow.  Curt had two very difficult days without any sleep (maybe 2 hours throughout the first two days.)  We realize that everyone is concerned for him and we can feel your love and support.  Curt was able to get about 5 to 6 hours of sleep last night, but is still very exhausted.  Because of this, we have limited visitors to immediate family members and we hope you understand.  As soon as he feels better and is up to seeing anyone, I will try to get on here and let you know.
 
So many people have offered to help with the kids, as I have been spending the night at the hospital.  You really are a caring and giving bunch!  Tonight I will be home with the kids because Brantae needs the comfort of home.  Curt's dad, will be spending the night in the hospital to help Curt with anything that he made need.  Curt told me, "Great, I'm going to need to get a stick with a needle in the end of it to wake dad up if I need anything!"  I don't think a stick will be needed...I think his dad will be staying awake most of the evening, keeping a safe and careful watch on his son.
 
Curt celebrates his 42nd birthday next week, May 25th, and I'm hoping he is home here where he belongs, celebrating it.
 
Love and Cure ALS,
Leslie

Posted:  5-10-10, by Leslie

Hello,
 
As I said earlier, I never know what to put in these updates.  I guess I'll just start with last week.  Curt's brother, Ernie, comes over a few times a week to help the kids with improving their abilities at sports.  It got to the point that Curt could no longer pitch to the kids, and trust me, I pitch worse than a two-year-old.  We are so thankful to Ernie, for the time he has been spending with our family, and helping us do the things that Curt can no longer do.  When he comes over, he brings his sidekick, Chuckie (dog).  Chuckie trots into the house and makes his way to the toilet to get a drink.  Ah...risky doing that because I can't make any guarantees that the toilet has been flushed.  We give him a bowl of water, but I think he prefers the toilet.  After sharpening their athletic skills one evening early last week, Uncle Ernie, Brantae and Sadye came into the house.  Sadye was standing there and out of the blue she said, "I wish they made phones in (and pointed to Heaven), then I could talk to dad.  I, of course, didn't know what to say.  Again in my mind I was faced with the truth that my daughter didn't completely understand the loss we will have in our lives.  Thankfully, Uncle Ernie spoke and said to both girls' that they would be able to speak to him, the same way they speak to Jesus.  I think Sadye understood, maybe a tiny bit, that speaking to her dad like she speaks to Jesus, just wouldn't be the same.
 
Sadye is a daddy's girl.  She has to give Curt a hug in the morning before she gets on the bus...has to!  A couple of mornings, he wasn't able to, and I had to put her on the bus crying.  She had this ritual before Curt became ill.  She is always hugging and kissing him and telling him how much she loves him.  I love watching these moments, because they are so precious.  As warming as they are to see, I am reminded, and not gently, that our life is different.
 
I had someone tell me, that a friend asked them to let me know "that I will be alright."  I looked at this person, and in my mind I wanted to yell, "Are you serious?"  "You have got to be kidding me!"  "They told you to tell me not to worry, that I will be alright?"  I won't be alright.  I'll function...and time will heal...but I won't be alright.  I think that people need to realize that each of us handles situations differently.  Maybe they would be alright if they lost their wife or husband, but not me.  And it's not that I'm worried about me.  I'm worried about our children.  I'm worried about everything that Curt gives them that I don't.  We each have our roles, and I think he has the more fun role.  But he's so good at what he does.  He's an amazing father.  I can't do the things he does.  I can try, but it's not the same.  Again, a reminder that our life is different, and will be different.
 
Ok, I think we need some humor!  A close friend of Curt's, named Mike, sent this email when he heard of Curt's illness.  I laughed with tears in my eyes because I could fully picture this happening in my mind.  We'll call this memory "The Debate in Kindergarten".  Mike wrote:  I was thinking about one of my earliest memories from Kindergarten.  You and I were walking home from school (down the hill on Prospect toward my house), and we were having a debate as to whether Steve Austin, the Bionic Man, had one bionic leg or two.  You were convinced he only had one, and I remember arguing that his other leg wouldn't be able to keep up when he runs, and I remember running down the street draggin' one leg behind to show you what it would look like!!  38 years ago!!!  Crazy.
 
Quinn's first baseball game is tonight and I'm so excited for baseball season to begin.  Curt has been busy figuring out where everyone will play and doing the batting order.  I think I need to go try to find Quinn's cup and wash it.  If you have a boy his age, do they do crazy things with that cup that Quinn does?
 
Thank you to everyone for your kind words, offering to mow the lawn, clean the house, for donating, sponsoring, or volunteering to help in this event.  We are looking forward to seeing all of you!
 
Love, Peace, and Cure ALS,
Leslie

Posted:  5-4-10, by Leslie

Family and Friends,
 
Well, Curt wrote the first update and he's the writer in the family, so please bear with me.  It's hard to know what everyone would like to know in these updates.  Before Curt was diagnosed with ALS, we knew of the name, but didn't really know what it was.  Rather than me going into all of the details, please feel free to look at the links for ALS of Michigan and The ALS Association.  And if you ever have any questions, please feel comfortable to ask.
 
As Curt mentioned, he's on a feeding tube.  Food is something that he misses terribly.  Even just being able to guzzle a glass of water.  Often I feel terrible eating in front of him, because I know how much he wishes he could eat a real meal with us.  On an upbeat side, I will share a cute comment with you from Sadye, our now 7 year old.  A couple of days ago she came up to me and said in an exaggerated voice, "Mom, dad is drinking a can of Mt. Dew through his tube."  I looked at her and said, "Sadye, that's ok."  She quickly replied, "I know!  I think it's cool!"  Ah, the little things that can erase the pain in our hearts for just a moment.
 
People often ask if we have told our children what is going on.  We have been honest with our children about ALS, but their understanding of what the future most likely holds, is not able to penetrate their minds.  Which, when I think about it, is a very good thing.  We are able to face all the challenges together, as a family, as they come to us and with each "change" be able to explain to them what is happening.  I think if they understood what I understood, then they would be just as a mess that I am.  And that, would not be good!  I find Curt being much stronger than I.
 
I want to thank so many people for all that they have done and for all that they are doing for us.  This new journey in our lives isn't anything that we could have ever been prepared for.  We have such giving and caring friends and family, and even strangers.  The support we have been shown, in each one's own way, brings tears to my eyes.  I have days when I am strong, and I have days when I just fall apart.  And kindness, it makes me fall apart.  The kids will ask me why I'm crying, and I just can't find the words to explain it to them so that they would understand.  Thank you, never seems enough.  But I hope that each and every one of you knows how touched we are and how fortunate we are to be surrounded by friends, family, our St. Joe family, and as I said...complete strangers.
 
There is no cure for ALS and it is unpredictable with each individual.  We need to find a cure...or something to stop it's progression.  Curt is still working, but doing only the bidding and overseeing the jobs.  Hey, isn't that what a boss is supposed to be doing anyway?  Well, Curt always liked to be doing the labor part and I think that's what his customer's liked about him...seeing the boss work!   On a work note, I have another story I need to share.  Sunday, Curt went down to a neighbors house because the man called and asked for a price quote.  A couple of years ago Curt and his worker's built a garage to house all of this couples cats.  I think they have at least 8, and often strays would come to their house and they would take them in.  Curt took Brantae and Sadye down with him when he went, because this couple has a pretty cool yard with a pond, in addition to the cats.  When they came back home, I asked Brantae if she saw the cats.  She said, "Yes, but only one of them would come to me...and it's name was 'Hope'."
 
I won't give up if you don't give up,
Leslie  

Posted:  4-28-10, by Curt

First off, I would like to thank everyone who put this together.  I won't name them, but they know who they are, and you know who they are.  Well, I guess I should've just named them.  Oh well.   It is a very humbling position to be in, but those are choices we don't necessarily get to make.  I think we all know what great friends we have in this world, but  something like this happens and you realize you had no idea the depths and magnitude of those friendships, and that is what will carry us through this.

This past summer I was running to find out where Quinn was canoeing in the channel at the cottage, when I realized that I was terribly out of shape.  I made a mental note to start exercising and playing basketball in the mornings again. Surprisingly I actually did start playing basketball and exercising again.  Of course my idea of exercising is giving the girls piggy back rides and playing kickball in the front yard.  I call it cross training.  Two months later I still felt like my breathing wasn't quite normal.  For the next few months doctors told me I had the heart of an 18 year old (must be why Leslie always told me to grow up), I was allergic to anything that tasted good, and their standard "everything seems to be normal."  I started having some difficulty with my speech and my arms felt heavy in Nov. - Dec.  And finally was diagnosed with ALS just after Christmas.  For a month we kept it to ourselves.  That was hard to do, because everyone would ask how I was doing and ask if I got my voice back yet.  I just wasn't ready to tell anyone.  Quite a conversation stopper.   I managed to get through the St. Joe basketball season with the help of Giles Feldpausch.  When I couldn't yell at the boys, he just yelled louder.  I would write down all my criticisms of the boys skills and he would relay it to them.  Probably wasn't fair to him because the kids probably didn't know it was coming from me.  When Ted started scoring on me, and Ross blocked one of my shots in our Sunday night basketball ritual, I knew it was time to hang my shoes up.  Eventually we started telling everyone, and that has led us to this point.

Healthwise, I have lost my voice, cannot eat (I have a feeding tube in my stomach), my arms are getting weaker, and my breathing is not what it used to be.  But I have no loss of strength in my legs and am still able to get around fine and help out with the kids.  I am still cross training in the front yard with the kids and coaching baseball.  The players  probably like not getting yelled at by me.  Unfortunately for them there are plenty of other coaches picking up the slack.

This summer Brantae is playing on her first softball team (she is extremely excited),  Quinn is playing baseball again, and Sadye just keeps talking about how good she is at soccer, and that we should sign her up.  We'll see about that.