Toes in the Water…

We have just come back from our little vacation/bucket list item earlier this week. We did a quick cruise from Galveston to Cozumel with the Big he’s dad and bonus mom. Those two are frequent floaters and have wanted to go on one with us but we never could make schedules work. We made our schedule work this time.

Have you heard that song by the Zack Brown Band where the lyrics go:

I got my toes in the water, ass in the sand
Not a worry in the world, a cold beer in my hand
Life is good today Life is good today

Thacruise 2016t pretty much sums up the trip. While we did not have our @$$ in the sand all the days, life was good.  The trip was a getaway from everything. Yes, the Alpha Lima Sierra is always with us but for those four days we were closer to normal then we have been since the diagnosis. The toll that a terminal illness takes on not just the body but the mind and spirit can be enormous. I follow others with Alpha Lima Sierra and I am in awe with the way they handle things. I want that to be us and it is part of the time, but the other part we just can’t get into that mindset.

So the trip was just what we needed to recharge the batteries and prepare to face this reality of ours. I think one of my favorite times was when the Big he and I spent the morning/afternoon just hanging out being “us”. The “us” before the diagnosis. The “us” that can just spend time together talking or not talking (those that know me, know there is not a lot of silent time when I am around because I can always find something to talk about). The Big he and I just laid out on the lido deck people watching, enjoying a cold beer or two or three,  and enjoying our time together. The little he would check in with us, give us kisses and then would be off. It was great watching our little he explore and enjoy some teenage freedom. For that day and the other three days, I can say “life was good”.

But the trip is over and we are back to the grind. We are still trying to get the Big he retired. I will start a new job next week so I am spending this week running errands, cleaning/purging the crap, and of course sleeping in and napping when I can and chilling with my little he. We still have not settled on a contractor but need to. Oh and our new car broke just days before the cruise so we are still waiting to get it fixed. Apparently, it is hard to find parts for a 2016 vehicle because they don’t anticipate them breaking or having a faulty part so the parts are not readily available. Go figure!

I think I will just go outside, close my eyes, play me some ZBB and imagine what that sand and water felt like.

…I got my toes in the water, ass in the sand
Not a worry in the world, a cold beer in my hand
Life is good today Life is good today

All my love,

The She

His update: About the biggest change we have seen is in his right hand. It is atrophying and now seems to be getting weaker. We continue to  pray that Alpha Lima Sierra slows to a snails pace so my big he can see a management or cure before its too late.

Our request to you: Support any and all efforts for the right to try investigational drugs. http://righttotry.org/. This means reaching out to your elected officials and letting them know you support the right to try. While there are so many worth causes, we do ask if you can, support ALS financially so a cure/management can be found. Please keep in mind at this time, there is NO cure or treatment for ALS. It is terminal, not sometimes or for a small few but ALL THE TIME for 100% of those that get it.

The walk to defeat ALS is coming up in the fall. We will start a team called what else, Tom’s Troops. Please consider walking in your local walk as part of Tom’s Troops.

Also, every August is the Ice Bucket Challenge. So you have time to think how to be creative with it and see how you can do this not just in style but raise awareness and $$$ too. If you #tomstroops when you do the challenge, I will let the Little he pick his favorite and we will send you a Tom’s Troops T-shirt. I know the prize alone makes you want to get your video out now. 🙂

So there you go and as always, #suckitals

 

 

Advertisements

Happy Father’s Day

2016-06-20_07.44.55Happy Father’s Day to all the Dads. Your job is a hard one and this past weekend we celebrated you. Last night as I was trying to fall asleep I thought about how thankful I am for my husband. How wonderful he is as a dad. How I am so grateful God put the two of us together so we could be parents to all of our kiddo’s. Granted three are in heaven, but we are parents to them none the less. Well before the little he arrived, the big he showed what an amazing father we was going to be. How much love he has for not just me but for his little ones. I remember when we were pregnant with the twins; the moment we learned we were having two babies and not one the ultra sound tech seemed a bit more concerned for the big he than for me. All I remember hearing was, “wait another heartbeat, its twins” followed by “Dad,  are you okay, do you need to sit down”?  From that moment on he had the biggest smile on his face and was a proud daddy. Well, I am going to remember it that way, in realty I think the initial pride had something to do with the fact his claimed he was amazing because he was able to make two babies. I believe his exact words were something like “Super Sperm”. He was equally devastated by the loss of those precious girls and again with our son. It was during those hard times that I saw what an amazing father he was and he was going to be. So when our little he arrived early  at 24 weeks it was not a surprise to me how he took to fatherhood like that was his purpose here on Earth. He followed our tiny boy to the NICU and stayed with him as long as possible. In fact, the big he was by our son’s bed everyday for 104 days. I can’t say the same. I was kicked out of the NICU for not taking care of myself which forced me to take several days off from visiting our little guy. Not the big he, every day. He helped clean out the little he’s ostomy bag,  helped anyway he could.

Fast forward 13 years. He is a wonderful father. He has always put his family first, has provided for us, he is showing the little he what a good work ethic is, how to treat a woman (by the way, I do realize that my husband does treat me like a pretty, pretty princess), how to treat your friends, how to put others before yourself and most importantly how to be a good father. I know the little he will be a wonderful dad as well, afterall he has an amazing role model.  There are so many more things I could say about the big he as a dad but I will leave you with this…I am truly, truly blessed that God brought the big he and I together and allowed me to be his wife and his baby’s mama!

Love to you all,

The She

The big he’s update: We are in somewhat of a holding pattern. So praise God! His left hand is pretty atrophied and  his right had is getting there as well. His stomach muscles from time to time get tired. He is embracing eating gluten free and trying to decrease the MSG in his diet. He still LOVES his massages and does see a difference in how he feels when he has had them and the days I flake out and he doesn’t get them. We are continuing to look for drug trials. We also continue to pray that his progression slows to a snails pace so we can get the time we need for a drug/management to be found and approved. Thank you all for the prayers and we just ask that you continue to keep the big he and our family in them.

Gone are the days…

Gone are the days that we don’t think about how the big he and I will not get a chance to grow old together if a cure is not found.

Gone are the days that I can control my emotions; fear, anger and sadness lie just below the surface. I have n0 idea when they will surface. That is one of the many things Alpha Lima Sierra has taken…control of these emotions.

Gone are the days of just coming home from work, having dinner and just hanging out. Now most evenings we are trying to do all those things we don’t seem to get done or taking care of all the things that need to be done because Alpha Lima Sierra takes and takes from us.

Gone are the days of sleeping through most nights. Sleep is hard when you are worried about your love and your love is worried about you.

Gone are the days that we can just hang out because we feel that there is something that needs to be done or something we need to prepare for.

BUT

Gone are the days that we get into arguments and stay mad just cause.

Gone are the days that we don’t miss an opportunity to say I love you or show each other how much we mean to each other.

Gone are the days that we sweat the small stuff. We know what is important and that is spending time as a family and making memories.

Gone are the days that we spend too much time worrying about how someone will react or what they will think about the things we do or decisions we make.  We live for our family and our faith not for others.

Yes, there are so many things that are gone, but so many things that we still have. We are still madly in love, we have the most wonderful son, we have a strong support system and most importantly we have strengthened our relationship with our Father.

Today has been a long day, there are so many things we are juggling right now that each one independently would be stressful and we are doing many at once and this post was starting out letting everyone in on my pity party, but as soon as I typed the first line my heart was filled with what we have now. So for those of you having your own pity party because you too are juggling many things, take a moment and take a big deep breath and think of all the things you DO have.

All my love,

The She

The big he’s update: His hands continue to atrophy and his legs get tired but now his stomach muscles are starting to twitch. We continue to try alternate therapies like massage and supplements. We are still working on becoming more gluten free and removing MSG from our diet.

 

Bucket List Reunion

image

GoFundMe Campaign

She and he and smaller he are out having fun and have asked me to post this very important campaign to support a Bucket List event opportunity that we need everyone’s help to make happen.  Big he would like to reunite with the 44 comrades in arms that deployed with him to Desert Shield/Storm.  We are asking for help to supplement travel and facilities for the reunion.  Any monies left over will be given to the family to support other bucket list activities.  If you can give that is great!  But whether you give or not please help us spread the word by sharing with all your friends and family on any and all social media sites that you can. We want to rally together and love on this family in this very tangible way.

Thank you in advance!

Steph