Storm is coming…

This phrase, Storm is coming, in my family is actually my Daddy’s way of getting rid of all the kids. Even when the sky is absent of any clouds, when we hear Storm is coming, we start packing up to head home.

Tonight, that phrase popped into my head but for a completely different reason. That reason, Alpha Lima Sierra. Tonight, we are in Houston because The Big He has ALS clinic tomorrow. For those not in the ALS know, Clinic is an all day event. You meet with a Neurologist, Pulmonologist, Respiratory Therapy, Physical Therapy, Occupational Therapy, Nutrition, the wheelchair vendor, and various others that do research into this disease. For many, going to clinic means hearing how much you have progressed. There is no rehabilitation for this disease. Most pray for a plateau in their progression but for many this doesn’t happen.

The storm I see heading our way is progression. Some progression is like a breeze, you feel it but there is not much to see. The storm of progression that is approaching us will change things, will leave a path of tears and fears in its wake. The Big He is getting weaker. His ability to breath on his own is becoming harder. He is losing his ability to do those things we take for granted like standing up, eating dinner, showering, and talking. Tonight, we had to quickly figure out the transfer from wheelchair to shower seat. Unfortunately I was not able to get a room with a roll in shower. We got an accessible room with a tub and bench. The difference is HUGE when it comes down to taking a shower. He was frustrated with me, I was scared that I might drop him when I helped him get up…in a split second I was running the “what if’s” in my head and what I would nedd to do if he fell. All is fine now. He is in bed, mask on and trying to get some sleep. The drive, dinner and shower exhausted him. That’s ALS. Tonight, I felt the fear and anxiety of this upcoming storm. This next change in the progression will be drastic. It will be a huge shift for the Big He, for the whole family. He will become more dependent on others.

I hate this disease. Nothing is holding back this storm. We must just watch. We are helpless when it comes to the progression. We know all we can do is try and stand as strong as possible to withstand this storm. We also know the calm will also come. We will adjust to the changes that come. We will get back to a routine…until the next storm.

A storm is coming. I can feel and see it. Our faith and love will keep us strong.

All my love,

The She

Walking and Rolling

Hey there. This is Lou as in Lou the service dog. I was made Team Captain of this years ALS Walk in Austin, TX. Why would The She put me as Team Captain of Tom’s Troops, well it just so happens I raised a lot of bones (that’s money for you hoomans) last year.

I want to reach out to all the pets out there (dogs, cats, birds, lizards, fish, you know who you are) and ask for a $20 donation from you. If you feel the love and want to donate more, that would be great! If your hoomans want to donate even better. I would also love it if  you would register to be a walker. Just know that I lead the way (I am the designated line leader). You can register as a walker or donate here. You can also register as a walker and not even walk, you would be a virtual walker.

So why do I walk, well first its what dogs do. Second and actually way more importantly, I am doing it for my person and very best friend, The He. I love him and want him to be my family for a very long time. So walking let’s me do my part to help bring awareness to this horrible, terminal disease. One that I might add has no cure or management to prolong life beyond a few months.

If you want to keep up with me, I have my own Instagram page. Yep, I am getting kinda famous. I mean, I do have the looks and the talent. Check me out on Instagram @lou_the_mobility_dog

See you soon,

Lou Gehrig Garey (The service dog)

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Reality

There are times when the Big He and I are just hanging out and talking I forget about ALS. There are times when I wake up and think, what the hell…is this really happening?.  It’s a new year and as people move forward embracing the future, I want to stop time. I don’t want to move forward. I don’t want to embrace the future. The future is scary. The future will only bring progression.  Only those that are on  or have been on an ALS journey get it. I see friends and family go about their day, dealing with the mundane things that we must do and I get mad. Probably a little jealous too. I am mad this happened to us. I am jealous those around me are truly  unaware of what ALS is and what it does. To be blissfully ignorant again.  I think, if only we had to deal getting up and going to work or getting your kid to school or practice. But that is not an ALS life. The reality of living an ALS life for the most part sucks. Yes, there many things I am able to appreciate more because of this life but the disease, sucks. From the outside looking in most people may think we are doing a good job. I have heard folks say they just don’t know how we do it. Well, I can tell you I don’t know how we do it either.  Living an ALS life is living in a constant state of grief. There is actually a name for it, anticipatory grief. As your PAL loses function, you grieve. You grieve the impending loss of another function. It kills me to see the Big He having to go through this. I want to take it away but again, the reality is I can’t.

The reality is we have to get up everyday and live an ALS life. For those of you who do not live this life, be grateful. Count your blessings that you do not know this disease.

Yes, I am aware this is not the most uplifting post, it was not supposed to be. It reflects what I am feeling right now. Fear. Frustration. Its the reality of this life. Good days. Bad days. Days you just want to yell WTF!!!  Maybe tomorrow will be good.

All my love,

The She

About the He. Well, he is progressing. He is no longer driving. His voice…it has changed. He still can talk in his natural voice but now it has the ALS slur. He needs a little bit more help with breathing during the day now. ALS Sucks!

 

 

 

 

From Micro-Preemie to Man-Child

Like most parents, today the Big He and I look back at where we were on this day 15 years ago. That’s because today is our son’s birthday. We celebrate every year with gusto because we came so close to not having a happy outcome. Most know the story so I won’t bore you with the details…okay maybe a few. Our boy came into this world 16 weeks early. He weighed 1 pound 13 ounces. He had 2 surgeries within the first 3 days of life and was in the St. David’s NICU, ATX for 104 days. We were told in the early days that he would most likely not make it and if he did there would be deficits due to his early arrival. He made it. He has thrived. When people ask me how can I have so much faith after all the things we have been through, I can’t see how you couldn’t. Our son is here despite all the reasons he should not be here. Not only is he our rainbow baby, he is our miracle baby.

He continues to amaze us. He is growing into a loving, compassionate, empathetic young man. Oh don’t get me wrong, he is still all teenage boy with the hormones and attitude and smart @$$ mouth but deep down under the stink and unsettling amount of hair that grows on his face, he is an amazing kid. The Big He and I are very proud of who he is becoming. He is someone that does not worry about what other’s think about him. He want’s to always help his friends and has a hug waiting for me or his dad if we have had a bad day.  He could care less about social media (we force him to post a few Instagram pictures). He does march to the beat of his own drum, which is usually playing some sort of country music from Kevin Fowler to Johnny Cash.

Happy Birthday Baby Boy, We love you more!

 

 

All my love,

The She

 

How YOU doing?

How many said that in Joey’s voice from Friends?

Seriously, “How are you doing” is a common question these days. I will be honest, for us that is kinda a trick question. Do you really want to know how we are or is it a question you ask because it is the polite thing to do? Most of you that know me (the she in the family), know that I am an open book.  I like to quote Popeye, “I am what I am”. So when you ask, I will tell you.

These days we are really just in survival mode. There is so much for us to wrap our minds around that it is very overwhelming. There is all the information given to us by the doctors regarding Alpha Lima Sierra on what to expect, drug trials, etc. The he’s military service may have had a part in this diagnosis as the rate of military members that are being diagnosed is at a higher rate than the general population (especially for those that served in the Desert Shield/Storm). In fact, the VA considers Alpha Lima Sierra a service connected disability. So there is now all the VA information we need to understand and digest. There are the things he is doing to ensure that the little he and I will always have his words to guide us and make sure we are taken care of and there are the hard medical things we need to get on top of before decisions need to be made. All of that and we must still maintain some normalcy in our home for our little he which includes things like work, school and baseball.

Do we have good moments/days, absolutely! But please don’t think that it means we are accepting of the situation or that we are just that strong. We don’t and we are not. It means, that we are having a good moment or a good day. Any strength we show is due to our love for each other, the support from our family/friends and our faith in the Lord.

Like I said above, I am an open book. While some things are hard to hear and many a tears are being shed (including ours), this is our new reality. It’s not always pretty, but it is what it is.

So how are we doing? We just got done with a good weekend. Good time spent with each other, the house kinda got clean and he did the laundry. So right now, we are good.

Love to you all,

The she.

Whisky Tango Foxtrot!

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.