The distance between grief and joy

20170615_184644When the Big He and I had been married for almost 10 years  we both decided we were ready to start our family. We never thought anything about how starting a family would be, I mean you try a few times and boom…pregnant. And that is exactly how it happened. We got pregnant after just one month of trying. Easy Peasy. This blissfully ignorant view of the world around me came to a screeching halt 17 weeks into my pregnancy when my water broke and  and we said goodbye a few days later to the precious twin girls we had created together. I had never known the amazing and incredible love like that for  your child  until I saw their hearts beating during an ultrasound. I also had not known the devastating heartbreak that came when we lost them. I truly could not imagine ever smiling or laughing again after they died. The distance to finding happiness again was too far and to be perfectly honest, I did not want any part of that. To be happy was to forget or so I thought. The guilt I felt when I noticed I was smiling after the loss was tremendous. Just as the Big He and I started shortening the distance from grief to joy we were devastated again by the loss of our son in 2001. Well as you can imagine I was pulled hard and fast back to the end of that spectrum and I lived in grief again. This time the grief was, familiar-scary but familiar and oddly comfortable. I guess its because I had been there before and that is where the comfort came in. A little over a year later we welcomed our Little He into this world, very-very early but this time our baby was alive. The distance between grief and joy over his early arrival (He is a former 24 week preemie) and the grief of his health issues (3 surgeries during the 104 day stay in the NICU) was no were near that of the losses. Looking back, the losses shattered me they broke me. Just like with the losses, the Big He and I pulled ourselves back toward the joy in life and that has been where we have stayed, for the most part. That is until Alpha Lima Sierra came into our lives.  Now, life is like a roller-coaster ride on the spectrum of grief and joy. I don’t and never have enjoyed roller coasters…just say’n.

Now days we can see so much joy and beauty in our lives despite the grief of the disease. Its as if the two are conjoined on the spectrum. There are days however when the progression takes center stage and something happens that joy is out of our sight. We know it’s there but we cannot see it at the time. And I know that the devastating grief will come for the Little He and just as the Big He helped me find joy I will do that for the Little He. I know where grief lives and my goal is not to let that be familiar and comfortable for our son.

Was this a hard blog. Yes. No one likes to talk about this but when you are facing a terminal disease, this is realty and its ugly. For those that have floated through life blissfully ignorant, I pray you always do.  I had a friend tell me I am wonder woman. I am happy she see’s the strength in me that I can’t see in myself right now, but I had to correct her, I am not so much wonder woman as that bat s#*t crazy Harley Quinn.

If you wondered about the cake picture. Did you notice it has two candles? Yesterday was 17 years since the twins died (most likely the reason I felt compelled to write this entry).  I always get a cake or cupcakes and we blow their candles our for them. The distance between grief and joy with them is like it sometimes is in our family now, there is no distance. I can feel sad for the loss of the missing pieces of my family, but at the same time I also feel joy because they still are part of our family and we remember them.

All my love

The She

Big He’s update: Alpha Lima Sierra is a real bitch of a disease. The Big He uses a walker now in the house and needs a wheelchair for going out. He will use one of those carts in the store but even that is getting hard as he has to walk inside to get one.  His voice is starting to become more strained and weak so if you want to chat with him in his natural voice now is the time although most of the time its easier to text him. He is loving the changes in our home since we modified it. He can now bring the wheelchairs in and he does. I think mostly to chase and screw with Rocky-dog.  The big discussion now is looking at getting a service dog. The wait list is too long so we are looking to purchase a puppy and have it trained. This way we can utilize the small tasks the dog learns instead of waiting  to get a fully trained dog (which of course ALS patients don’t really have time to wait two years for an animal that could make their lives so much easier and provide more independence). While we are lab lovers we have been looking at german shepherds due to their size. This dog will be a true mobility dog assisting the Big He in stabilizing while standing (while he still can), picking up dropped objects, alerting to falls or alarms and opening doors.

 

 

Cha Cha Changes…

It’s been awhile huh? May was a very busy month for us. Where do I start?

We started the home remodel at the end of April so we were in full remodel mode come May. The plan was to completely remodel the bathroom to make it handicap accessible, add hardwood floors to the master bedroom, the Little He’s bedroom and man-child cave, and my office. We also had french doors and a wheelchair ramp added to our master to provide egress for the Big He in case of an emergency, all the doors widened to 36 inches and a new door added from the garage to the home to accommodate an easy transition from  the garage and lift to the house. We temporarily  placed our bed in the living and moved the furniture around to make room for the bed. I pretended that it was like a huge suite at a hotel, only problem is that I kept hanging that dam tag on the door for maid service and no one ever came to make the bed and fluff the pillows. I was never really good at  pretend.

As you know from my previous post, May was ALS Awareness month. We were fortunate to be asked to attend the ALS Association Advocacy Conference in Washington, D.C. So during construction the Big He and I along with Frank the Tank took off to D.C. The Little He had school and stayed home. Let me just say, that trip was a fun adventure. We knew we would probably run into issues as this was our first time hauling a motorized wheelchair with us so the expectation of a hassle free trip was pretty low. The airport and United Airlines in ATX did an amazing job with Frank.  Frank did require a bit of a modification as we had to take the back off and lay it down so it would fit in the plane, but other than that, it was great. When we arrived in DC, the ground crew was waiting for us with a picture of Frank and I was asked to go down with them and help put Frank back together.  How cool is that?  Once Frank was reassembled, it was off to the hotel where we had a great view of the Washington Monument. I could make a post just on the trip because of how amazing it was but a quick summary is that we fully enjoyed the conference. I learned a lot about advocacy work, we met so many wonderful pALS and cALS and was able to talk with lots of Veterans and share with them about the work The Independence Fund does with Veterans and Caregivers.  Of course, Frank the Tank was a hit and most folks were surprised we brought such a big chair. If you have not figured it out by now, the Big He and I don’t always do what is expected and pretty much see a “can’t” or “shouldn’t” as a challenge we will gladly accept. The ALS Advocacy Conference was an amazing experience.  Some of the highlights of the trip were:

  • Spending some much needed alone time together
  • I surprised the Big He with a tour of the White House thanks to our friends Jake and Jenn.
  • I had another surprise waiting for the Big He when we went to Capital Hill. Senator Cruz’s office had an American Flag flown and presented it to him during our meeting.
  • We were able to have dinner with a military friend from our days in Guam. We loved visiting with John and hope to see him again soon at the upcoming 2017 Deployment Reunion.

A pretty significant change in May was that the Big He had to get his feeding tube placed. Not so much because he can no longer eat but because his respiratory function has declined prompting the need to get the procedure over with.

There are other changes we are seeing in the Big He like his voice is beginning to become weaker. It is more noticeable when he has been talking a lot which we are lucky he is not a talker so that doesn’t happen too often.

Finally, a HUGE family change occurred at the end of the month. Our baby boy finished middle school and is off to high school. I am still in shock about that. I mean, how can they let an infant into high school. It was only yesterday that he was born, right?

Well I think that covers it. I know I was not very good about the whole keeping you updated. Life just became too much for me and couldn’t find the time to post. Well, also I just wanted to post cuss words but didn’t’ think that would have been much of an update, it would have been therapeutic thought…which is why my journal is covered in them.

Until next time. All my love,

The She.

When I get a chance I will post some pictures of our DC adventure.

 

All out of sugar

Did you know that May is ALS awareness month? If you have been reading this Blog you probably already know this, but if you forgot, here is a reminder. I pretty much see everyday as ALS awareness, not just one month a year. It’s awareness because we live an ALS life. Every moment. Every hour. Every day. I’ve tried to remain upbeat, for the most part, and tell you about ALS sprinkled with a little sugar, or humor in my own little way. As I was trying to fall asleep last night, I got to wondering if people really understand this disease. I am not talking about the PALS and the CALS, but those that only get a passing glance in to the world of ALS, like a passing feed in Facebook. Scroll, Look, Pause, Move on to the next.

Today, I am out of sugar. Oh, not to worry, I will tell my good friend Alexia to put it on the grocery list and she will correct me to tell me she added it to the shopping list, but it will be added and we will get more for future posts.

What ALS means to this caregiver. First, it sucks!,  I absolutely hate what it has done to my family. When I think about what this means to us, my mind jumps to the future. Will my future have The Big He in it?  How on earth will I live without him? He has been my other half, my better half for my entire adult life. We have been together almost 28 years, married almost 27 years. How do you suddenly live your life when a part of you is gone? It scares the hell out of me. Oh, my head tells me I will survive but my heart says it will be a life with not as much joy as one with the Big He in it. Every day this is my reality. Take a moment and think how you would be if every day you knew that the love of your life, the future you had planned together was not going to be there. Everyday. The spontaneity of our life is coming to an end, I can see it. It’s sad.

Another reality of this disease is watching the love of my life progress. At first it was not so noticeable. He would get tired a little easier. Not be able to walk the neighborhood like we once did. Now, in a year, this disease has really started to show us how devastating it can be. The Big He cannot really walk unassisted. Things like using the debit card is impossible because his fine motor skills are just about gone. Standing up for any length of time is taxing on him. Think of the things you do daily and don’t think twice about how your body is affected. Standing for a shower is hard. Standing at the kitchen counter just talking is a thing of the past. He needs to sit and conserve his energy at this point.  He can no longer lay down without the need of his ventilator. His body is becoming weakened so much that what muscles that are remaining are working overtime and he becomes exhausted quite easily. It is not uncommon for him to need multiple naps a day. Sounds fun right. Wrong. In order to nap, he must hook up to his breathing machine and hope he can get into a comfortable spot. Also, you need to remember that he constantly has fasciculation’s all over his body. To better explain this, imagine having muscle twitch, in your arm, leg or eye. Now imagine it continues over and over. It does not just go away. Think that might drive you a bit crazy? All of these things are happening and more and does he complain. Nope. Doesn’t complain a bit. I do. I want to scream about how much I hate this disease. Lately, I have noticed his voice is not as strong. Can I just tell you how upsetting it is to know that sooner than later, hearing him say things like “I love you” or calling my name in his natural voice will be gone.

What about what it has done to our son. He knows what this disease is, what will happen. We’ve talked about it. We told him we would be open and honest about everything and we have. Even to the point of me letting him know how I feel at different times and its okay for him to be mad at the disease. Our son has gotten to do many wonderful things, but the reason is not wonderful. We are trying to let our boy experience all the things son’s and fathers do together. We are just speeding things up and trying to make those father/son memories as fast as possible. While we are proud of the young man he is becoming the reason again is sad. A boy of 14 should not really need to know the realties of this disease. A boy of 14 should not know the responsibilities he is having to take on. As parents, we only want to protect our children and The Big He and I cannot protect him from this reality.

I pray a cure or management comes soon so other’s, maybe even you or someone you love, does not have to know the cruel reality of this disease. Remember, there is ZERO cure, ZERO drugs you can take to make you better, ZERO treatments. The only thing that doctors can offer is to help with the quality of life to try and make the ALS patient comfortable. That is it and that is unacceptable to me.

With understanding this disease comes awareness. With awareness comes empathy and compassion. With empathy and compassion comes funds. With funds comes research and with research comes a cure.

The Facts of Life

People have told us how strong we are or how the he and I are holding up with what is going on. I  am not sure I see it that way but hey, if you think so let’s go with that. I don’t so much see us as being strong as us surviving. That’s what you are really seeing, this is what survival mode looks like from the outside looking in. We make jokes, we use terms like, “it is what it is” or “nothing we can do” and we smile or laugh. Yes, we get up every morning and I go to work, the Big He does morning truck pool before settling in and puttering around the house and the little he heads off to school.

What you don’t see is the struggle to get up and get around every morning. Some days are harder than others. Most days, I have to force myself out of bed, it would be so much easier to stay in bed with the room dark, snuggled next to the Big He and pretend that we are not living an Alpha Lima Sierra life. Facing the day and staying focused is hard. I can’t speak for the Big He, but for me not only is it hard to stay focused, it is so exhausting.  You just don’t realize how much energy it takes to do simple things.  Another thing that I have found is that my brain has turned to mush. I am not kidding, I have lost IQ points since the diagnosis. Simple words escape me when I am talking. This is happening at a time when I need to keep my wits about me. There are times that I will be talking and then whoosh the thought is gone or I draw a blank trying to talk. While at home this is not so much a problem since the Big He and I can pretty much communicate with looks and gestors (the benefit of being married for 26 years)  and the little he being the teenage boy he is, doesn’t listen to me to begin with, but outside the home it becomes a problem. Again, some days are better than others when it comes to being able to concentrate. We take the good and we take the bad you could say.

Another thing is the level of stress Alpha Lima Sierra causes. This probably explains the lost IQ points. I know we all have our challenges and stress in our life, but looking back at our life before diagnosis, for me anyway, that daily stress was not even in the same league as what our family is under now. It is all a matter of perspective I guess.  I can tell you that what we face daily are the challenges of the disease and knowing for the most part, each day is as healthy as the Big He will be. Let that sink in for just a second. Every day forward is another day that he progresses. I am trying to change my attitude with this. There is a guy in my area (a badass name Jay) that also has Alpha Lima Sierra and he talks in terms of when he is cured or when he is better. Again, some days I am better at this than others. Some days it is easy to talk about our future…mine and the Big He’s when a cure is found and he is better. Some days, not so much. The days when we are discussing things like upcoming procedures, caregivers, Wills, Advanced Directives are the days it is hard. These are being done not for an “if” but for a “when”. These are the days it takes extra energy to make it through and as many know, our method to survival is sometimes with humor, probably sick humor to most, but humor to us.

So we take the good and we take the bad, we take them both and there you have…The Facts of an [Alpha Lima Sierra] Life.

All my love,

The She

The Big He’s update:

The Big He is progressing and now days he uses his track chair more than he doesn’t. The Trilogy is like his blankie, it goes with him everywhere he is going to nap or sleep. He tires much easier now. He is still talking and eating which is fantastic but his handwriting is starting to go. I know some are asking themselves, how would you even know, trust me it is. While he can still talk and eat, we are moving forward with getting a PEG (feeding) tube. We want to do it before his breathing progresses anymore. The construction on the house begins next week. We are having many of the doors widened, modifying the bathroom and bedroom to become more accessible. My car comes home today after being gone about 5 weeks for it to be converted to handle a motorized chair.

The biggest thing we can ask right now is for prayers. Prayers his progression slows, prayers that a cure or management is found and able to get on the market soon so the Big He can take advantage of it.

Trading Places

Can I tell you a secret? I hate confrontation. This may come as a surprise to many but I do. I try and avoid it. Not the Big He, he is REALLY good at it. That may not come as a surprise to you. Since we were married, he has been the one that I go to when I need that push to stand up for myself. Ok who are we kidding, he is the one that stands up for me.  Things are changing these days, I am finding my own voice but it apparently only comes out when the “Houston, we have a problem” voice goes off in my head.

Another little nugget of information about me is that I am a nurture by nature and not so much the protector. The Big He is a protector by nature. Probably explains why he went into the USAF and the law enforcement career field. He has always been protective of me and when the Little He came along he went into double duty protection mode. He still is protective of us, Alpha Lima Sierra has not changed that. Truth be known, I love to take care of him and the boy and I love that he is the one to always watch out for us.

While I still don’t like confrontation, I am finding that it is more and more necessary especially with Alpha Lima Sierra. I think that confrontation and protection go hand in hand these days. It is only because I want to protect the Big He that I find I am becoming confrontational.  I will admit that when we first got the diagnosis I was not the best advocate for the Big He. The shock of learning what this disease is knocked us all off balance. That shock lasted a long time. I have said it before, but it is true, we lived in a fog of disbelief. Heck, even today, I wake up and can’t believe we are living an ALS life. Since diagnosis, I have found my voice.  I use it to advocate for the Big He. I used it when we needed to get him to retire. I have and continue to use it ensure that care and equipment are being provide by the VA with the same expectation as I would have for non VA healthcare. I am finding that when I see a problem I am quick to act. While I do try and maintain a sense of professionalism with my interactions, I am not always successful. I know I can get a bit bat $hit crazy. Maybe with age or just the shear stress that is part of this new life, but patience is not something I have a whole lot of.  The way I see it, the Big He only deserves the best care. There are no “do-overs”  and I refuse to “what if” myself which is why my expectation is high. There is no room for anything less.   He is my world so I feel sorry for the person or person’s that don’t treat him as such. He has a t-shirt that says, “I have a crazy Italian wife and I am not afraid to use her”.  I think that sums it up. I am crazy, crazy about my family.

All my love,

The She

The Big He’s update: Well, he is progressing. It is getting harder for him to walk short distances. He uses his bad ass track chair all the time now. Which is actually great, because it allows us to get out of the house. We go no walks like we use to, before diagnosis. He uses his ventilator every night now and when he lays down. Breathing is becoming a bit more difficult due to his weakened diaphragm.  His body may be getting weak, but his heart and mind are as strong as ever. Meaning, he loves us and those around him and shows that love. He is still the same ole smart ass as he has always been! Even more so these days.  🙂

 

 

What would you say?

cemetaryAt the end of your life, will you know your worth? What will you be known for? Will you know what other’s think of you?

This weekend, we learned one of Tom’s brothers he served with had died. I have been reading the Facebook posts of the amazing things people are saying about him. Do you think he really knew what other’s thought about him. Probably not and that is very sad to me.

This is something I have actually been thinking about well before the diagnosis.  I have always said that in the end our headstone will read: Loving Father/Mother, Husband/Wife, Brother/Sister, Son/Daughter and friend. Nothing about kickass employee, top in career or had 500+ friends on Facebook. Once the Alpha Lima Sierra diagnosis came into our lives, we have made it a point to say and show our love and not to leave things unsaid.

At the Big He’s retirement party, we got to hear and read all the wonderful things that his co-workers thought of him. It was overwhelming. I know he is amazing but to hear other’s knew this too (well actually to hear others can see past the @$$ attitude he sometimes has) was amazing.

If you knew tomorrow that your loved one would not be here  anymore would there be anything unsaid? So what would you say if you had the chance?

All my love,

The She

This is how he ROLLS

So big update….The Big He received his Track-Chair from the Independence Fund this weekend. Carlson Mobility delivered it for us, in the rain, so the Big He could get rolling. He has not stopped smiling since. This chair has given him the independence to meet this damn disease on his terms. Alpha Lima Sierra no longer controls if he can leave the house or not or what he will do. He can now go to the baseball fields with the Little He and not just sit and watch. He can play an active part, as he should since he is an assistant coach. We are headed to New Orleans soon, and yes, the Big He can and will lead the way. The whole family can’t wait to go fishing and hit the walking trails again. This is how my Airman rolls now. ALS can just go suck it!

Independence Fund and Carlson Mobility: Thank you , Thank you, Thank you!

To all our troops, if you want to make a donation to help other veterans, please consider donating to the Independence Fund.

http://independencefund.org/

To find out more about the Track Chair please visit:

http://trackchairsoutheast.com/