alone

Sometimes I feel so alone in this journey with Boo that it's disheartening. I feel like there is nobody that understands and a surprisingly small amount of people that genuinely care, sadly. I don't know. Maybe people think we're just crazy and they all think that everything is just fine with Boo and The Man and I are just "overreacting." Maybe people are just tired of hearing about it after 4 years. Maybe it's just too depressing and people can't take it. I don't know. I really don't, but I find myself feeling alone and sad.

Yesterday The Man and I were each reeling each for our own reasons. Me feeling sad at how seemingly few people CARE about Boo... or maybe about our family. Between The Man and I we have 5 siblings, and none of them ever call to ask about Boo or how he's doing. Not even after his major (and one life threatening) surgeries did any of them call to ask about him or see how he was doing or how he was recovering. Even our parents, Boo's grandparents, seem to take only a half-hearted interest... calling only occasionally. Admittedly when Boo has surgery, especially a major one, they do call to see how he is and they will often call at least once or twice to see how his recovery is going. The day to day Dr.'s appointments and specialists and new meds and new problems and the day in day out minutia is lost on even them. I hurts me deeply that when I do something like post on Facebook about Boo I can get 20 comments from friends, some of which haven't seen me in over 20 years, and prayers and comfort and support... and nothing from The Man's two sibs or my brother that are on FB. It hurts me that they don't even CALL after seeing posts to find out what the details are and how Boo is doing. It hurts me that it is very very obvious that they just don't care. So I wasn't in a great place yesterday with all that... and it left me even more in this feeling of being alone in this. I hate feeling so alone. I have The Man and that is not to be diminished at all, The Man is with me on every step of this journey and for that I am eternally grateful... but I feel like it's me and him against the whole world with no family or friends there for us... having our backs... and it hurts.

The Man is in a difficult place right now because the reality that MAYBE, and only maybe, Boo is over his Lyme is pushing him to realize that Boo is as good as Boo is going get. Boo is not going to grow more myelin even though he's better. He's not going to have his central nervous system magically improve. He's not going to have the severe pronation of his feet disagree. He's not GOING to catch up to his peers... he's just not. I've known that for a really really long time. I have already mourned the loss of that for him and felt the grief and moved past that into acceptance... and love. Yes, I still have my moments now and then that it bubbles back up on me and I feel that grief and pain again, but by and large I know that this is what it is and I'm okay with it. The Man is just now having that realization and feeling that pain and dealing with the mourning and the grief. He's going to have to find his way through this, with me at his side supporting him in every way I can, but I can't do this for him... no matter how much I would like to. So my heart hurts for him because I know how much he is hurting. I'm sorry he has to go through this. I'm sorry for his pain. I feel guilty because sometimes I still feel like this is all my fault what happened to Boo... and what happened to Boo is what is making The Man hurt now. I know The Man has to get through this in his own way in his own time. I just hope he'll lean on me and my love for him to help.

So, it's a hard time right now. At the same time that it is a very exciting time! I mean the mere thought that maybe Boo is free of Lyme is amazing... absolutely amazing. I don't know that I ever really believed that the day would ever come that that would happen. I'm hopeful while trying to stay grounded and not putting all my eggs in one basket. It seems that the story of Boo is that with all the greatest blessings we have with him they all come with some pain... but the joy outweighs the pain ten fold. We are just so grateful to have that special boy in our lives, we are blessed.