I have taken a little time from writing not because I wanted to but because honestly my mind and heart couldn’t do it. I have tried to hold it all together for all of the assorted people in my life and worked on getting it together for me. So I am sitting here thinking about this again, about how much I miss writing. About how I wonder if anyone missed the posts that I have made.
I have had people tell me that my medical journey is over since we no longer have Zachary on earth, while Zach’s journey is over. My family’s journey is not… we have 3 other people in this family; we have extended family that matters and close friends that matter. I mention this because we have been walking in and out of the medical world; I am learning it is quite different than what I had with Zach. Zachary was blessed with some of the most caring doctors and his story wasn’t the norm on what had to be done. I developed friendships because of Zachary which have helped me walk this new journey. Friendships that helped connect me with doctors that I could trust and that if they said don’t worry it calmed my heart. I am learning things now that I never had to with Zachary but I am understanding right now how hard it must have been for him to SMILE and to be the amazing little boy that he was. Friendship developed through my grief but now stand strong through the normal waves of life.
There are so many things that effect us and yet we just keep walking, we keep working with the waves. There are many people that are impacted by invisible diseases, diseases that you can’t tell that the person has from the outside of the body, they don’t have to lose their lives to them like Zachary did, and they may simply lose out on some of the other things in lives. Those diseases can cause you to lose out on family time, work, recreational time, and/or dates with friends. They may affect how you feel about yourselves and often will affect the moods that you have. Why do I mention this? Well it is simple; I as well as some of the people I am close to have invisible diseases. They have different names… psoriatic arthritis, rheumatoid arthritis, fibromyalgia, chron’s disease, abdominal migraines, metabolic diseases, depression, allergies, migraines, diabetes… I know that there are many other diseases. However, with these invisible diseases come along pain and sufferings that we often face in silence.
Now that I have mentioned this I can say why I mention it… I am learning that I am the only one that can determine how I am going to listen to my body. The standards and normal that I was used to can vary hugely based on how my body is doing. There are times when I can’t get up to do things and while I really want to I can’t. There are times when I want to be able to talk with a family member but work has taken all of her strength from her. There are emotions that I have to realize aren’t truths, they aren’t based in fact but in emotions that because of the daily waves that are hard to deal with.
My Goal is to learn how to deal with things… as the waves of life come and I get knocked down to remember that I are worth it, that I am alone, but also to learn and to remember that I have been really blessed by the people that I have around me, that love on me and care about me.