Before i start this, i need to say how heartbroken i am by the events that transpired on December 14th. Everytime i look at my children I feel so much sadness for the mothers that arent able to see and hold their children today. This blog is not going to be my usual rant and rave session today...
I have spent the past 12 months pretty angry and sad. I have mourned the life I wanted for my child and also mourned him in a way. i have thought of years ahead of now and trials my family may face. i have shed so many tears over what may happen in the future. It is hard not to imagine what the future holds even as the future for DMD patients is constantly changing and the statistics are slowly changing. its a hard way to live a life.
For Robbie and my girls i need to start moving past this. There is much i can't control in life but there is a lot i have the power to change. I have decided to stop measuring myself by other mothers. Not everyone can run the charities and be the face of dmd families. maybe that isn't the path I go. maybe my contribution will be in fund raising and hugging. The point is this happens to all sorts of people from all walks of life and we all will react and deal differently.
It simply comes down to i can live my life sad and angry or I can grab on to the hope and love in my life and carve out some happiness for my family. The love I have for my kids isnt going to be any different if my kids are walking or in a wheelchair. I need to stop fearing what might be and enjoy what is.
I don't think there will ever come a time i wont have a slightly heavier heart or won't wonder, why? I have to be able to have those feelings and still be a functional person. I could literally drown in sadness or I can choose to live w/ the sadness. Not in sadness but accept that i feel it but that it doesn't lessen the happiness and love I have in my heart too.
i think it is natural for me to question God, question by faith in a situation like this. As i told Kelsey though I am sure there is a God and a heaven because i watched my Grandma pass and I knew instinctively it didn't end for her that day. i know there is a god because i know the blessing of children.
Last week started w/ Kelsey talking to Shelby and I about Robbie and her standing up to some kids giving him a hard time. She wrote a speech for her class, checked out some books from the library, and most importantly she talked and she keeps talking. There were hard questions and some tears but I am so very proud of her.
I want end as I stared today. Kelsey asked me if I thought all those kids in Connecticut went to Heaven. i told her I like to think that all the moms and dad and grandparents that are up there were waiting for them. i told her my grandparents and Daddy's grandpa, and Danielle's dad were all there and that all those children are feeling a lot of love. I pray that all those families find some sort of peace and i cry w/ them.
Tuesday, December 18, 2012
Wednesday, December 5, 2012
A peak inside my head...
when my life became abnormal I became obsessed with normal. the thing is I am not sure normal is even attainable. I know for a fact I will never be normal again. Of course that isn't all bad. It's just not what it was before DMD was a part of our lives.
guilt isn't something I really got before. Some days the guilt threatens to completely take me over. I fight it but it's hard. I know I didn't do anything to cause this at least intentionally but I can't shake that this happened in my body. that my egg was damanged or something funky happened when cells divided its was still in my body and that fact is always on my mind. I know there is nothing i could have done different that it just happened but it happened in my body to my child.
It really bothers me that I didn't know this could randomly happen to a family. I mean i am not carrier yet thats my kid w/ the exon 45 issue. No one told me I had to fear this. Hell theres still no one telling moms this is on the scary list for everyone. this drives me absolutly crazy the randomness, i was blindsided but then I am not sure it would have better another way. DMD is already taking things from me but at least I have all those years when he was just Robbie and I was mom w/ 3 healthy kids.
I have learned how ridiculous it is to try and cherish every moment of any thing. It isn't possibly when you bring a baby home and they puke all over you and it isn't possible when you are given horrific news. I enjoy what I can, fake what I have to, and cut myself some slack when I need it. This is an extraordinary situation and I am only human.
I always thought god wouldn't give person more then they can handle. Now i am not so sure. I am not sure I am handling any this correctly. I certainly wish there was a guide book or a diagram anything. People all the time tell me how good I am doing. I guess because i am not on my knees railing at God but thats totally whats going on in my head.
Most people don't notice me freeze when I see a wheelchair or notice Shelby grab my hand when theres some dumb commercial about a kid getting cured of something that has a cure. When Shelby talks about an RV he doesn't hear me struggling w/ whether or not we should do it since a few a years from now it might be too hard w/ a motorized wheelchair.
i try so so hard not to concentrate on the negative and trust me i have heard that advice enough for a lifetime. i can't do it though as much as I fight internally to stay positive I really just cant find peace.
I fear seeing into the future, meeting families w/ boys that are further on their journey. I know how horrible that sounds and it keeps me up at night. I know for Robbie I need to get over my issues but I really just don't know how. Again a guidebook would be fantastic.
My tree isn't up yet.I have a place to put my Grandma's Christmas village but it is still in a box in my garage. I want to be into Christmas for the kids but wow its hard. Last year at this time of year everything changed. i am angry with December, with my stupid body for not protecting him, w/ God for not stopping it. i want Christmas back but at the same time I want it in a box not reminding me of everything that happened last December.
I don't know how to do this and I hate myself for not instinctivly knowing what to do. i thought if something was ever wrong w/ my kid i would just swoop in and handle it. Be this super mom but I am more like a super emotional shell of a person. I read all the time these woman who weren't going to give up that found this strength and did amazing things. What is damanged in me that i am not there? What if i never get there?
I have always hated i when people call children that are different 'special. it always seemed like a condescending thing to me but it's true. Robbie might have DMD but he is stronger and wiser then I will ever be. not being normal isn't an issue for him it's just his life. I know whether or not i get it together. Cure or no cure this child will have the most beautiful life he can have. i guess my greatest fear is that he will look back and remember the mom I was before we found out and be disappointed in the mom i became in the aftermath. truthfully i guess we all stress about screwing up i just feel like I have less time to make it right.
guilt isn't something I really got before. Some days the guilt threatens to completely take me over. I fight it but it's hard. I know I didn't do anything to cause this at least intentionally but I can't shake that this happened in my body. that my egg was damanged or something funky happened when cells divided its was still in my body and that fact is always on my mind. I know there is nothing i could have done different that it just happened but it happened in my body to my child.
It really bothers me that I didn't know this could randomly happen to a family. I mean i am not carrier yet thats my kid w/ the exon 45 issue. No one told me I had to fear this. Hell theres still no one telling moms this is on the scary list for everyone. this drives me absolutly crazy the randomness, i was blindsided but then I am not sure it would have better another way. DMD is already taking things from me but at least I have all those years when he was just Robbie and I was mom w/ 3 healthy kids.
I have learned how ridiculous it is to try and cherish every moment of any thing. It isn't possibly when you bring a baby home and they puke all over you and it isn't possible when you are given horrific news. I enjoy what I can, fake what I have to, and cut myself some slack when I need it. This is an extraordinary situation and I am only human.
I always thought god wouldn't give person more then they can handle. Now i am not so sure. I am not sure I am handling any this correctly. I certainly wish there was a guide book or a diagram anything. People all the time tell me how good I am doing. I guess because i am not on my knees railing at God but thats totally whats going on in my head.
Most people don't notice me freeze when I see a wheelchair or notice Shelby grab my hand when theres some dumb commercial about a kid getting cured of something that has a cure. When Shelby talks about an RV he doesn't hear me struggling w/ whether or not we should do it since a few a years from now it might be too hard w/ a motorized wheelchair.
i try so so hard not to concentrate on the negative and trust me i have heard that advice enough for a lifetime. i can't do it though as much as I fight internally to stay positive I really just cant find peace.
I fear seeing into the future, meeting families w/ boys that are further on their journey. I know how horrible that sounds and it keeps me up at night. I know for Robbie I need to get over my issues but I really just don't know how. Again a guidebook would be fantastic.
My tree isn't up yet.I have a place to put my Grandma's Christmas village but it is still in a box in my garage. I want to be into Christmas for the kids but wow its hard. Last year at this time of year everything changed. i am angry with December, with my stupid body for not protecting him, w/ God for not stopping it. i want Christmas back but at the same time I want it in a box not reminding me of everything that happened last December.
I don't know how to do this and I hate myself for not instinctivly knowing what to do. i thought if something was ever wrong w/ my kid i would just swoop in and handle it. Be this super mom but I am more like a super emotional shell of a person. I read all the time these woman who weren't going to give up that found this strength and did amazing things. What is damanged in me that i am not there? What if i never get there?
I have always hated i when people call children that are different 'special. it always seemed like a condescending thing to me but it's true. Robbie might have DMD but he is stronger and wiser then I will ever be. not being normal isn't an issue for him it's just his life. I know whether or not i get it together. Cure or no cure this child will have the most beautiful life he can have. i guess my greatest fear is that he will look back and remember the mom I was before we found out and be disappointed in the mom i became in the aftermath. truthfully i guess we all stress about screwing up i just feel like I have less time to make it right.
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