Thursday, June 6, 2013

A vacation and a plea

I believe a huge issue special needs moms deal with is guilt. You feel guilty for what happened to your child, anything that continues to happen to your child, for going back to work, and for not paying enough attention to the rest of your family. I believe there is some form of guilt issues swirling around in every moms head, but it seems they triple with a child with special needs. I dealt with guilt issues when Emily was sick as a child, but it's even worse now. I am not sure why.... it just is. Maybe it's the understand that Jude's life is so fragile...but isn't every life?

Special needs moms feel like if they speak about the secret guilty wishes they have then everything could collapse. We should just be thankful when our lives mimic something in regards to "normal". If our child is healthy, our jobs our safe, and our family is well.........that's all that matters..right? It is and it should be!

However, I found myself missing private time with my husband. I miss being able to go off on intimate vacations, staying out late, and acting crazy. I held my breathe as I typed this because I would give everything including my life to just keep Jude with us.

However, I couldn't stop thinking about my incredible honeymoon with Mike. For the first time in a really long time I missed just being.............still. I missed laying on a bed with the ocean breeze streaming through the windows and not a worry. Then I snapped myself out of it and reminded myself I have a whole lot more than many other people do and to be very very grateful! I looked around at my nice house, my beautiful family, and I realized what's really important.

After receiving a message I decided to rewrite my last paragraph of this blog. Sometimes we mean our blogs to portray exactly what we are thinking at the time we write them and when reread that sound completely opposite of our thoughts. So let's try this again. Five years ago we found out Jude had a stroke and five years ago Emily started her charity. In those past five years we have received thousands of stories and requests for Emily's Smile Boxes. These stories are tragic, sad, and sometimes hard to read. Many times these stories have ended in the death of the children we send the boxes too. It can get overwhelming, but we signed up to do this. Emily can no longer read the stories with each request as they take an emotional toll on her. However, I read them and relay to her if she needs a box made for a boy or girl. However, over the past five years I have also had well meaning friends/family send me a lot of random struggles of people on the internet or acquaintances through facebook.  I know it's with good intent. They think because we struggle that we will want to see someone else struggle too, but that's not the case. It's different if people reach out to me through my blog or through the charity requesting a box. When you send us other stories without requests for boxes and just for us to read for the sake of reading it's just more sad stories on top of sad. Make sense? I guess my point was that I read a lot of blogs of friends we have that struggle. I see a lot of struggle everyday through the requests through the charity. I hear a lot of struggle through the emails I get through my blog. So rest assured I see these stories everyday and relate to them. I help others as much as I can, but sometimes all the stories take an emotional and physical toll. So if I don't know them, or they don't need a box, or you don't know them personally sometimes it might be okay to skip sending me one or two of the sad stories you run across. It might save me a few tears that day.


Reagan Leigh said... I have to say something (and feel free not to publish this on your blog). I understand that you want to protect Emily, BUT that comment you made about not wanting to hear people's stories because it just makes you sad...many people would say the same thing about your story. Your life and struggles with Jude makes them sad or they feel sorry for you. We have people in our lives that have completely cut us out because it's just too much for them to process...the life we live. Family members that say they can't read Reagan's blog because it just makes them too sad to see all that she goes through. REALLY?!?!? Seriously?!?! Makes THEM too sad? This is our life! We are LIVING it, and they can't even read about it?!?! I hope you can see how offputting that is! These people that are sending you their stories are doing so from the heart. This is their lives. Their tragedies, their triumphs. I urge you to not discourage them. Just my opinion...

Cjengo said...

I don't mind publishing your comment. I am very open to a genuine critique. However, I think sometimes in our quest to share our feelings and circumstances through our blogs we leave ourselves open to misinterpretation. The point I was referencing here was that I have well meaning friends/family that scour the interent and send me very sad stories and struggles or they forward me people's sad struggles on from facebook. I searched my heart and I believe it's because they think that I will relate and therefore it's with good intent. However, as I pointed out I see a lot of these stories through Emily's Smile Boxes on a daily basis. I see it in my own life and I see it through the blogs I choose to read. When I mentioned we cannot "Read" those sad stories anymore I was referencing the ones people I know forward me. I was in no way implying I don't read the stories sent from Emily's Smile Boxes because I do. However, I will stand fast to the fact that Emily doesn't. She is only 14 years old and I see 5 years of tragic stories affecting her. We too have lost friends because of our story. However it would be one thing if I was referencing people that are sending these stories from their heart, but it's family/friends forwarding me stories. Again, 5 years of watching something like Columbine or a tornado unfold every single day over and over takes a toll. It was just letting them know we have a lot of those stories coming in without them researching for others. Hopefully that portrayed a little clearer picture of what I was trying to say.

Reagan Leigh said...

Yes...definitely understand that. Not at all what I thought you were talking about! Thanks for the clarification! :)

Kim C. said...

I definitely get it. As a special needs mom myself, I do not find the other special needs mom's stories or blogs sad or depressing. In fact, I feel less alone, and can totally relate to the daily triumphs and struggles. It's the other events in the world, the stories I don't know, not about these precious children, that can be difficult. Sometimes, we just can't take that all in.