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.