Strength

My husband fell in the garage on March 28th. He had surgery April 8th. It has been a long slow recovery. He has only been back to driving a car for a couple of weeks. I don't know how often I have mentioned this but I have an eye disease that is slowly destroying my corneas and I can no longer drive a car. This was not a good situation for us. On top of all that Robbie began another round of  serial casting, we had an iep, new braces,and we had prepare for summer camp.

We survived. I am so glad we were in Michigan because I don't know how we would have even got him to the hospital in Georgia. Our families helped us so much. I don't have words except thank you which really doesn't seem enough.  It was such a long hard spring for me I just didn't have it in me to post here.

It was hard to see my husband hurt like that. He is always such a rock for me. We have such a good partnership and it has always worked really well. Suddenly it was just me for everything. If I am being honest and I strive to be I wasn't sure I was strong enough to handle it all.

I would never wish this injury on my husband. I love him way to much for that.  I did find my strength in all this. I went an IEP and I got Robbie the services he needed. That was huge for me because I am so shy and it is hard for me to speak up. I went to all the casting appointments, the brace castings and fittings. I took care of 2 people in casts for weeks. It was something that needed to happen.

not the injury but me being more in control of Robbie's disease.

 I am afraid of duchenne. I feel so dirty admitting that. The thought of taking care of him while is body gets weaker scares me.  I don't know how i will do it. I will I just don't know how.  The past few months forced me to deal with the fear.  I had to push past it because Shelby and Robbie needed me to be strong.   I met other moms  dealing with all this. It helped so much to know everything I felt was normal. The fear, anger, hope, and denial. 

Duchenne can be so isolating for a family.  I know in our family this isn't something we have dealt with for generations. it's only us. Even when surrounded by the people we love we  can feel so alone. Sometimes it hurts so bad.  Our families are amazing. I want to be clear here I don't want anyone to ever have to deal with this.  I am jealous that it seems everyone else gets healthy children and I don't. I know that's not exactly true and we all have our crosses to bear . It does seem like the distribution of those crosses is not always fair but that is another blog altogether. 

The past 4 months have really forced me to deal with a lot of stuff I was just carrying around. I think I am a better wife and mom. The weight of everything I was carrying around was slowly drowning me. Then all of a sudden I had to swim.  Maybe its silly to be proud of myself but I am.  I can and did get my family through a really hard time.  

I met another mom from Robbie's school at a field trip.  She was asking me questions about Robbie and I remember saying "I'm sorry I know I bring a room down." She looked at me like I was nuts and told me there was no need to apologize for just talking about my reality. That was like a life changing moment for me.

I don't know why I needed to hear that since my whole blog is basically dedicated to saying this sucks and owning that. I mean its something I have felt very strongly about, not sugar coating my feelings to make it easier for everyone else. On my blog that at least. In my life not so much.  Some people need me to be okay so they don't have to face this. I get it because sometimes I need that to.

I used to get angry when someone told me to concentrate on the positive. Well first duchenne is an awful muscle wasting disease. it will slowly rob my child of every basic function. There is no positive there. I have an amzing little boy. I am thankful to be blessed with him but there is no positive for this disease. 

Sometimes people will tell me "oh don't be sad today, it's a happy day".  I get it. My sadness makes its hard to go through the day pretending there is nothing going on.  The thing is I am never not sad.  I am happy and all the other emotions but I don't ever stop hurting for my child. Asking me to turn it off isn't fair.

I try not to get so upset when people tell me God has a plan. I realize that it makes people feel better to say it. That it makes them feel like they are helping me and I don't want anyone to feel bad for offering me support.  I don't agree at all.  I don't believe in a god that plans this for children.  I can believe there is a God.  I refuse to give my faith to anything that plans this for my child.  I am not going to debate this. That's pointless we all have a right to believe what we believe. 

I think collectively as a society we need to stop pushing this whole look at the bright side mentality. The truth is there are times things just suck. There are times yelling, screaming, and ripping the scab off are the only only way to get through the day. it's okay to not be strong. it's okay to just let me be sad. There isn't anything you can do or say to relieve the pain. It hurts. The guilt, the sadness, the anger it's all part of me.

I am stronger today. I  am more of a complete person and less of the shell I was for a few years. I have found my strength many times over.  I have gotten to a place where I can process my feelings and deal with them. I can feel what I am feeling w/o apology. I still struggle with that. I hate to see tears in another person's eyes and know my words are putting them there.  I can't hide my feelings anymore though my kids need a mom that tells them it is okay to feel.