Thursday, October 23, 2014
Jude didn't have a great night again. That means lack of sleep for us all. It's tiring and frustrating but we are marching along. We have a Palliative care team meeting for him Saturday so I am hoping they can help a little.
Yesterday I was reading a post in a forum about how frustrated a mom was of a special needs child was and I could relate. She felt that people complain so much about what seems to be insignificant things. Since she is dealing with such a heavy load she found herself getting very angry at these people. I have been through this and I understand. I think this hit me more when Jude was between 2-3 years old. I was very angry at that point and had little patience with many things. I would even get angry when I would see people's long "birth plans" mapped out on social media. I would think to myself "How about you just hope you go in there and give birth to a healthy baby because sister you have NO idea what can happen". A bit mean huh? Trust me my thoughts could be even meaner. I know the lady that posted in the forum is not mean at all I just wanted to share my experience because maybe someone could relate. For me it was a part of the process of grieving for the child I didn't have and finding the amazing blessing in the child I did have. It took me awhile to realize that even though people's issues seem insignificant to me those issues are important to them. I also reminded myself of my own words..........everyone has their own story it's what you do with yours that makes a difference.
A friend of mine helped me remember that we are all different and all walking in different shoes. Some shoes are more worn than others. She emailed me after reading my blog one day when Jude was little. She is dealing with a terminal illness that causes significant pain. She told me how she loved reading our story and just wanted me to know something. She then proceeded to tell me that she knows our life is hard but she would give anything to be a mother. She would give anything to have a baby and would love a baby like Jude. I told myself that I was allowed to vent and complain about the lack of rest and more because it was healthy. However I would never do that again without counting every single blessing I had. So that is why you sometimes see me starting my blog out with an apology and telling you about my blessings prior to venting. Because I was lucky enough to be chosen as Jude's mom. Because someone in a more difficult situation wished she was in my situation.
I then realized that we are all just living our lives. Some people have never experienced tragedy, some cannot handle tragedy, and some have to much tragedy. I realized I had to stop and accept that I cannot expect people to try on my shoes. They wouldn't be comfortable and they couldn't understand what has gone into making those shoes. I had to respect that what is important in someone elses life, although insignificant to me, may be important to them. When I encounter someone complaining about something that seems frivolous I generally just reply, "I can totally relate and trust me I understand". Generally they take a step back and realize that life has so much more to offer and it could be worse.
I guess what I am trying to say if if you cannot find the rainbow then all you have left is clouds. I cannot tell other new special needs moms that it gets easier, but you do adapt. When people tell you that the first two years are the hardest they are telling you the truth. I know it seems like you are alone in a vast empty space and that no one can understand, but know there are a lot of moms in this world that know what you are going through. There are many of us that could change our shoes out and they would fit comfortable for the long journey we have ahead of us.