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.