We have officially known that Robbie is suffering from Duchenne Muscular dystrophy for 10 months. i can't believe we have made it this far, i really didn't think i could live through the news. I thought for sure my heart was to broken the world would end and that would be that.
I have decided to give my self a little lightness as we head into the holiday that will forever be bittersweet for me. The next to months I am going to focus on the happy. I am going to try and post everyday about the blessings in my life. Don't worry will still share angst when I have it but I think surviving the holidays and stuff is going to take some work for me and my kids are used to me making it special so I am going to do that.
In times of sadness there is almost always someone that takes your hand and pulls you through. so many people have done that for my family it's hard for me to start but i think I have to start at the beginning.
On December 13th 2011, we got a call that was going to break the hearts of a lot of people. We needed a family member and we needed them quick. right away all of our parents starting trying to get to us. it didn't matter how much it cost someone was going to get here. In the end it was my mom that came and 3 parents that had to stay behind. I can't imagine what it was like for the 4 of them.
I mean your kids call and you know their lives are about to be destroyed and you can't fix it. Okay i guess i can imagine that but it had to be hard.
When the news came we were all hoping wouldn't come we were lucky enough to spend 2 weeks w/our families. Instantly they stepped up. Nothing that happened before then mattered anymore. I let go of some grudges well really we all did.
we went so long being alone, and we were pretty good at it, but we couldn't do it anymore. So our family fed us, they cried w/ us, they made us laugh. Some of them bought extravagant gifts,some said come to my house and wrap presents, some were just there. We are loved.
if there is a good thing to take from all this its that it opened me up to give love in places i maybe should have years ago. I am so lucky to have love to be able to love. i feel like my family hasn't grown but it's so much bigger.
So today I am blessed to be part of the Jones/McGregor/Bates family. I love you all and I hope that everyday you know how much comfort your support gives us. How the days when it gets too much we know you are there. I know all of you are hurt and devastated like we are but you manage to be so strong for us. i just want to say...
Thank you!
Monday, October 15, 2012
Friday, October 12, 2012
The day she couldn't think of a title
I used agonize over whether or not I should feed my kids organic food. Stress about whether or not to let them watch TV. I used to compare my parenting to everyone else. I would live for the day they were tall enough to ride a roller coaster and I used to dream about a house full of kids, spouses, and grand kids. That is all trivial crap i don't get to worry about anymore.
I understand other people still get to worry about those things and trust me I am so happy for them. having a sick child is much more then you think before you find out. Yes, it is emotionally devastating like we all suspect when it isn't our child. No one tells you how hard it is to force yourself to get through each day. How overcome w/ guilt you can become even though you didn't do this. the physical and mental stress of specialist after specialist. How emotionally devastating it is to sit through IEP. The insensitive crap people say to you that you have to be gracious about.
Please know if your biggest issue is the height of your child, high fructose corn syrup, or recurring runny noses, I don't think you wrong to worry about those things. As parents we are charged w/ raising the next generation and none of us wants to get it wrong. I am jealous of you and I really can't apologize for it anymore then you can apologize for having a healthy family.
My prospective is screwed up but that's because something really screwed up is happening to me. Every day I wake up to this grumpy little boy(not a morning person) w/ the best hugs and i look at his legs hoping his calve muscle have miraculously shrunken. I hope and pray for a cure and I force myself to be the best damn parent I can be. it is not easy and when I see someone lamenting about something trivial and every once in a while it hits a nerve,
i am not trying to play a game of my life sucks more because obviously there are varying degrees of awfulness everywhere. One persons bad day is anothers good day. My life is hard and it is scary right now. I know their are people in my life that are here for us but it is still so hard to be us right now. I feel like so many people feel a need to lecture me, think positive, gods plan, whatever else I am not getting. it's not helpful, in fact it hurts me.
I am trying so hard to find grace. to be a fighter and strong but I fail sometimes. i get angry, I get sad, and sometimes I want to run away, but I wake every day and I keep trudging through. I don't need people to judge me, I don't people to make this better for me, or people to try to make it understandable for me. All i can ask is that people understand that when i am being a bitch I have things weighing on that you maybe can't understand so just be grateful for that.
I understand other people still get to worry about those things and trust me I am so happy for them. having a sick child is much more then you think before you find out. Yes, it is emotionally devastating like we all suspect when it isn't our child. No one tells you how hard it is to force yourself to get through each day. How overcome w/ guilt you can become even though you didn't do this. the physical and mental stress of specialist after specialist. How emotionally devastating it is to sit through IEP. The insensitive crap people say to you that you have to be gracious about.
Please know if your biggest issue is the height of your child, high fructose corn syrup, or recurring runny noses, I don't think you wrong to worry about those things. As parents we are charged w/ raising the next generation and none of us wants to get it wrong. I am jealous of you and I really can't apologize for it anymore then you can apologize for having a healthy family.
My prospective is screwed up but that's because something really screwed up is happening to me. Every day I wake up to this grumpy little boy(not a morning person) w/ the best hugs and i look at his legs hoping his calve muscle have miraculously shrunken. I hope and pray for a cure and I force myself to be the best damn parent I can be. it is not easy and when I see someone lamenting about something trivial and every once in a while it hits a nerve,
i am not trying to play a game of my life sucks more because obviously there are varying degrees of awfulness everywhere. One persons bad day is anothers good day. My life is hard and it is scary right now. I know their are people in my life that are here for us but it is still so hard to be us right now. I feel like so many people feel a need to lecture me, think positive, gods plan, whatever else I am not getting. it's not helpful, in fact it hurts me.
I am trying so hard to find grace. to be a fighter and strong but I fail sometimes. i get angry, I get sad, and sometimes I want to run away, but I wake every day and I keep trudging through. I don't need people to judge me, I don't people to make this better for me, or people to try to make it understandable for me. All i can ask is that people understand that when i am being a bitch I have things weighing on that you maybe can't understand so just be grateful for that.
Tuesday, October 9, 2012
Cheese
He sat at the table for 10 minute shredding half a block of cheese. I sat right next to him. He never asked me to step in he just kept going. i could tell he was struggling and I wanted so bad to take over but he wasn't going to give up so I couldn't either.
When I think about this disease I worry about the future, the scary thing that will happen to my child. It's natural I mean this disease is cruel and it's enough to make me question everything I have ever known. Robbie deals w/ this disease on a much more personal level every day.
Every night when we go to bed that little boy has worked harder then anyone else in our family. he doesn't stop, he never complains, he just carries on. Truthfully Robbie has been dealing w/ this a lot longer then I have. Its incredible to me that the little boy that had to have his head glued together after he climbed our entertainment center was afflicted w/ DMD. He walked ll through Disney(this was before we knew) never once complaining even though we kept saying he was pokey.
He is brave in a way that has to be respected. He is stubborn and proud. He loves unconditionally. If you are one of Robbie's family , you are loved its that simple.
He was so proud when he was finished grating his cheeses for dinner. It's hard to explain how much he struggled w/ it. he worked hard but he was determined in a way i wish I could be when challenges present themselves. Is it strange to get inspired by cheese grating? i don't know it probably is but i have to find a match in the dark, you know?
I have to remember the night he he grated half a block of mozzarella and didn't stop until it was done no matter how hard it got. i have to remember that no matter how hard this for me it is harder for him. That there will be days I want to jump in and make it better but I simply cannot do that all the time.
Robbie's life may end tragically but his life is not going to be tragic. His life is going to full and beautiful, brave and strong, and loving. I might get to see this disease cured or lessened and I might not but I have to, we all have to remember that he is a fighter.
When I think about this disease I worry about the future, the scary thing that will happen to my child. It's natural I mean this disease is cruel and it's enough to make me question everything I have ever known. Robbie deals w/ this disease on a much more personal level every day.
Every night when we go to bed that little boy has worked harder then anyone else in our family. he doesn't stop, he never complains, he just carries on. Truthfully Robbie has been dealing w/ this a lot longer then I have. Its incredible to me that the little boy that had to have his head glued together after he climbed our entertainment center was afflicted w/ DMD. He walked ll through Disney(this was before we knew) never once complaining even though we kept saying he was pokey.
He is brave in a way that has to be respected. He is stubborn and proud. He loves unconditionally. If you are one of Robbie's family , you are loved its that simple.
He was so proud when he was finished grating his cheeses for dinner. It's hard to explain how much he struggled w/ it. he worked hard but he was determined in a way i wish I could be when challenges present themselves. Is it strange to get inspired by cheese grating? i don't know it probably is but i have to find a match in the dark, you know?
I have to remember the night he he grated half a block of mozzarella and didn't stop until it was done no matter how hard it got. i have to remember that no matter how hard this for me it is harder for him. That there will be days I want to jump in and make it better but I simply cannot do that all the time.
Robbie's life may end tragically but his life is not going to be tragic. His life is going to full and beautiful, brave and strong, and loving. I might get to see this disease cured or lessened and I might not but I have to, we all have to remember that he is a fighter.
Sunday, October 7, 2012
This Weekend.
It doesn't matter what this disease takes from our family because we will always have the little things. there will always be a hug, a laugh to share, a good meal. It is so easy to get wrapped up in the unfairness of this disease. To feel only pain but life just isn't that way. We have to live even when sometimes it hurts to do so.
It is a constant struggle finding peace and happiness in the face of the hell our life has become. It is also a gift, allowing us to see the beauty of the little things. You can't take a walk through the mall for granted when at some point your child may struggle to do so. A hug because you say, yes to going to gamestop is a lot more meaningful then it was before.
Saturday we made homemade waffles, saw a movie, hit the mall to spend Kelsey's birthday money, ran by parents, watched the Tigers and the Reds win their games, and spent Sunday in our Pj's eating nachos and watching more baseball. it was simple but it was amazing. We laughed and screamed, hugged and kissed, and we were just us. We weren't 5 people living through devastation but a family, a happy family. For a brief second i forgot I was angry and said thank you, God, thank you for this amazing family.
DMD isn't stronger then the love this family has. We wont let this take us down. No matter what the future holds we will have weekends like this. we will laugh even when it hurts. We will hope and we will pray that this is moment a cure is found, that this is the generation of survivors. We will hold on to this boy and be his strength when he needs us to be and we will let him fight his battles when he needs too. we won't let him give up, we we help him find his happy and musuclar dystrophy will not define us or him.
It is a constant struggle finding peace and happiness in the face of the hell our life has become. It is also a gift, allowing us to see the beauty of the little things. You can't take a walk through the mall for granted when at some point your child may struggle to do so. A hug because you say, yes to going to gamestop is a lot more meaningful then it was before.
Saturday we made homemade waffles, saw a movie, hit the mall to spend Kelsey's birthday money, ran by parents, watched the Tigers and the Reds win their games, and spent Sunday in our Pj's eating nachos and watching more baseball. it was simple but it was amazing. We laughed and screamed, hugged and kissed, and we were just us. We weren't 5 people living through devastation but a family, a happy family. For a brief second i forgot I was angry and said thank you, God, thank you for this amazing family.
DMD isn't stronger then the love this family has. We wont let this take us down. No matter what the future holds we will have weekends like this. we will laugh even when it hurts. We will hope and we will pray that this is moment a cure is found, that this is the generation of survivors. We will hold on to this boy and be his strength when he needs us to be and we will let him fight his battles when he needs too. we won't let him give up, we we help him find his happy and musuclar dystrophy will not define us or him.
Friday, October 5, 2012
What can't be changed still hurts
he's loves me even though I am flawed. I am Mommy even though i can't make this hurt go away. I am tormented w/ thoughts of a future w/o his hugs, a world still spinning w/o him in it. If that days comes I don't know if I will be able to keep breathing if i will have it in me to say goodbye to a child.
I try to accept what i can't change. i try to find comfort in the little things but its never enough. there is a part of me that froze on December 15th and I don't know if that will ever thaw.the world looks different to me. colder, more harsh, I find myself craving winter when the world will look bleak and I will feel the same.
My child is sick in his DNA. there is nothing i can do to change that, its part of him like my eyes and his fathers need to know how things work. i cannot have my child w/o this disease. I would never choose not having him although I feel so guilty that by having him he is sentenced to this disease. i wonder all the time would I have attempted having children if I had known this would happen?
Honestly, i don't know. I can't imagine not being the person to raise these little people but I hate that their world will be colored by this disease. i have faith in my children. the three of them have a bond I envy i was close to my brother growing up but theirs is stronger different. I see Kelsey as Robbie's constant support and Madison pushes and challenges him but she will take anyone out if they give him a hard time.
Robbie will be stronger then I can even imagine. he is not going to lay down he will fight and he probably give us the strength to fight w/ him.
My every view of the world has changed. Some days i don't even know what is that i think. I don't know how to care about an election, or a policy. I just want my kid better. i want to vote for the person that will make this go away. i know it's selfish and I know that i don't care that it is. I know i should be fighting harder, raising more money, but I also know i am a mess right now and i can't do that until i am more together.
The world wants me to cherish every moment I have w/ him but that's bull shit. it is simply not possible to cherish heel chord stretches or steroid swallows. You only say it to someone that is eventually going to lose something. Like if I cherish every moment it will somehow make it less tragic. Now I am not saying i don't file away every single happy moment and hold on to it knowing someday it might be all I have. can you imagine knowing that unless something changes all you would have from your childs life are memories? would you be able to dig deep and enjoy every moment knowing they will end in a horrible fashion?
I'll admit maybe I need some faith but i prayed so hard and i am so angry that this prayer wasn't answered how I wanted it to be. I know god has a plan and all that crap so he gets to do this to my son and I am supposed to bend to his will but i can't. i wonder if God in enjoys doing this to people or is he is hurting w/ me or am i a barbie doll and all his decisions have been made and he sits back watches.
Wow i feel like this all over the place today. I have been all over the place this week. DMD is starting to make is presence known in life our again. appointments, IEP's, i wish I could explain the stress of all of it but its hard to explain. it makes me crave normal whatever that is. it makes me jealous of other people, it makes me cling to food, to watch baseball games that don't matter 3 times in a 24 hour period, I am desperate to just be like everyone else. for Robbie to just be a little boy.
I try to accept what i can't change. i try to find comfort in the little things but its never enough. there is a part of me that froze on December 15th and I don't know if that will ever thaw.the world looks different to me. colder, more harsh, I find myself craving winter when the world will look bleak and I will feel the same.
My child is sick in his DNA. there is nothing i can do to change that, its part of him like my eyes and his fathers need to know how things work. i cannot have my child w/o this disease. I would never choose not having him although I feel so guilty that by having him he is sentenced to this disease. i wonder all the time would I have attempted having children if I had known this would happen?
Honestly, i don't know. I can't imagine not being the person to raise these little people but I hate that their world will be colored by this disease. i have faith in my children. the three of them have a bond I envy i was close to my brother growing up but theirs is stronger different. I see Kelsey as Robbie's constant support and Madison pushes and challenges him but she will take anyone out if they give him a hard time.
Robbie will be stronger then I can even imagine. he is not going to lay down he will fight and he probably give us the strength to fight w/ him.
My every view of the world has changed. Some days i don't even know what is that i think. I don't know how to care about an election, or a policy. I just want my kid better. i want to vote for the person that will make this go away. i know it's selfish and I know that i don't care that it is. I know i should be fighting harder, raising more money, but I also know i am a mess right now and i can't do that until i am more together.
The world wants me to cherish every moment I have w/ him but that's bull shit. it is simply not possible to cherish heel chord stretches or steroid swallows. You only say it to someone that is eventually going to lose something. Like if I cherish every moment it will somehow make it less tragic. Now I am not saying i don't file away every single happy moment and hold on to it knowing someday it might be all I have. can you imagine knowing that unless something changes all you would have from your childs life are memories? would you be able to dig deep and enjoy every moment knowing they will end in a horrible fashion?
I'll admit maybe I need some faith but i prayed so hard and i am so angry that this prayer wasn't answered how I wanted it to be. I know god has a plan and all that crap so he gets to do this to my son and I am supposed to bend to his will but i can't. i wonder if God in enjoys doing this to people or is he is hurting w/ me or am i a barbie doll and all his decisions have been made and he sits back watches.
Wow i feel like this all over the place today. I have been all over the place this week. DMD is starting to make is presence known in life our again. appointments, IEP's, i wish I could explain the stress of all of it but its hard to explain. it makes me crave normal whatever that is. it makes me jealous of other people, it makes me cling to food, to watch baseball games that don't matter 3 times in a 24 hour period, I am desperate to just be like everyone else. for Robbie to just be a little boy.
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