Sometimes reality is awesome. Sometimes reality sucks. One thing is for sure; it is what it is.
We are adjusting to our new normal, which basically means things are always changing. Make sense? Yeah, it doesn't to me either.
Landon has good days and not so good days. I would be lying if I said it were easy. It isn't. Not at all. Most days I have to do a lot of self talk and remind myself to count my blessings. When I go to change a diaper I have to mentally prepare myself because I still struggle every time I see blood. I have no idea how we will get him potty trained. I cry daily; sometimes out of sadness, sometimes out of relief that we endured another day, sometimes out of grief for what I thought Motherhood would be, sometimes out of sheer joy and love. I am constantly searching for answers and alternative ways to treat Landon's symptoms. We do our best to feed him well and right, based on his condition. I'm grasping at anything and everything and researching all the time. Thank God for Google! :)
When others ask about Landon, I have found myself down playing what we go through. I believe I do this for a number of reasons. Firstly, I have a strong belief in our thoughts and words becoming our reality. I fear that if I really go in to detail about what we go through that it could negatively effect Landon's healing. The more positive and upbeat I stay, the more of an advantage he will have to win this battle. He WILL persevere and he WILL come out on top. I have no doubts about that. Secondly, I am not a complainer and never want to be seen as someone who isn't grateful for what I have. I am an eternal optimist and I am grateful. I know at some point I will look back on all of this and see the gifts in our experience. Thirdly, I don't want to make anyone uncomfortable. I know many people just don't know what to say when they hear our story. I get that. I really do.
With all of that being said, the reality is that this sucks a lot of the time. Some of the things we have to do on a daily basis are not fun. I'm sick of poop. I want my son to be healthy. I long for the day when we get to know him off of the mind altering medication that is Prednisone. I want so badly to trade places with him.
On the flip side, I am seeing progress in his healing. He is in a much better place than he was in December of last year. Night and day difference! We are discovering new ways to help him and the new therapies are proving to be beneficial. I'm incredibly excited for his future. He was put on this earth for a reason and I have a feeling his purpose will have quite an impact. What an honor it is to walk beside him and support him in his journey. I'm proud to be his Mama.
That's my reality. A somewhat emotional, always grateful, at times exhausted, PROUD Mama.
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