As I layed awake most of the night last night, throwing myself a pity party, dissappointed in myself, my life, my choices, etc....I started going back to that place of "what if's".....I tried to think of it objectively and I came up with lists of the differences between life before Julia's injury and after....and tried to decide which was better - not that it really matters now, because it is what it is.....but, I just wanted to write it out. Maybe then I can decide for myself the goodness that has come out of her injury, regardless of the stressors of this life.
BEFORE - normal baby girl......had she continued on this path, here are the things I think about.....
Julia is five now. Had this injury not happened, she would be riding her bike, she would have friends and playdates, we could go places, like the movies, without any ordeal. We could find regular teenaged babysitters and I wouldn't have to worry everytime I went out about the possibility of another life threatening seizure. She would be involved in school activities. She would talk and say the same sorts of funny things that Jack does. We could go get our nails done together. I could put her hair up and she would like it. She wouldn't be so frustrated with herself and us for things she cannot express. She would be done with the terrible two's. I would still be working in typical veterinary medicine, making good money, and being able to get the kids everything they wanted/needed. I would not have the financial disaster that I have right now. I may have been able to salvage the marriage to their father and not have the stigma of being divorced twice. My father would not have disowned me. Shawn's sister wouldn't have disowned him and removed Shawn from his niece's life. I wouldn't have lost the beautiful house we lived in in florida. I wouldn't have lost so many of the friends and family that just don't call anymore due to our circumstances. I wouldn't have my weeks filled with rehab appointments for julia, and dr appointments for julia. Julia would not be on medication for seizures which can have long term complications. I would have more free time. I wouldn't have an "aura" of chronic sadness following me around all the time which is difficult for everyone. Julia would be happy, thriving, and normal. Sure, it wouldn't be perfect, nothing ever is, but, it would be "typical" stuff, not overwhelmingly stressful stuff that affects every aspect of our lives.
AFTER - severe brain injury due to MMR vaccine at one year of age...
Julia IS happy most of the time. At this point, I don't think she realizes she is that different from other kids. Julia is beautiful and alive and touches so many different people's lives. Julia loves us and everyone. Julia is a trooper with her dr appointments and rehab appointments and WILL get better - to what degree nobody knows. Julia is SMART. Though I have lost many friends and my father, I have made SO many other friends that matter more to me than anything - I will list some here - sorry if I forget anyone - Shawn, Bernie, Jess, Susie and clan, Kayanna, Pam, Anna, Kory, the whole "sprucewood" clan, Juliette, Lisa (bless your heart), all of Julia's teachers and the school director, Mark, my mom and roger of course, Leticia, Wendy, Sydney, Colton, Stacey, all of Shawn's friends who have stepped up, Dawn, all my fellow mom's of brain injured kids that are facebook friends, Katie, Jeff, and I am sure there are so many more I have left out - NOT intentional - just having a brain freeze. I have educated myself on vaccination in people and animals, and I now KNOW better and can see the corruption and the herd health mentality. Due to this education, I moved away from typical vet practice, and have met so many people who do strive to really help animals and their people. Most notably Larry - thank you for entering my life - your compassion is unbelievable, and I hope to accept my loss as well as you have with your son one day. I am working, for much less money, but for what I feel is a better cause. Spay and Neuter - boring, maybe - but when you walk the halls of these shelters, and see all the dogs and cats that will not be adopted, the reality of the loss of healthy life really hits you - so I am doing what I can in my small little portion of the world to try to help these animals. I have met MANY new people at these jobs, who I believe will become friends soon, who share the same passion. I have become a more compassionate person trying to help those in need to the best of my ability. If not for this injury, I would have NEVER learned so much about the legal system and FIGHTING for what is RIGHT and ADVOCATING for my daughter and her needs. Most typical parents do advocate, but multiply this by a billion - I have learned to do this and take pride in it. I have educated MANY people through talking to them about vaccines and through Julia's blog. Even my new boss is listening to me and agrees! How good does that feel! I have a roof over my head (a NICE roof), and I am able to take care of the basic needs of my family, along with Julia's special needs school which has brought her so far! I have help, support, and understanding from many.
So, though there are many unkowns about the future, and many thing I miss about "before injury", I would have to say that "after injury" isn't all that bad. It has changed the course of many lives, but I think in many ways for the better.....so, I pick "after". Not that I would ever WISH this injury on ANYONE, especially a child, it is not a death sentence. It is what it is, and, though very stressfull at times, watching your child, who you love more than anyone or anything struggle at life, it will all be OK. I am grateful for all I have learned. AND, I will keep Julia going and happy.
Thanks for listening.
Susan
Sunday, January 16, 2011
Wednesday, January 5, 2011
Four years ago today - life changes....
To read the whole story, see posts from December and January of last year..not going to rehash it tonight.
I spent most of the day in bed, after, FINALLY, being able to go into Julia's room this morning, with Shawn, to get her up. I haven't done this since the injury four years ago when Julia's father found her in her crib. The following year, I couldn't get her up, and thankfully Mark got her. Last year I had Shawn get her. And this year, I was able to go with him to get her. Her head popped up like a little gopher, and I felt better. I picked out her favorite dress for her to wear today to school. She looked like a princess!
Jack had a dental appointment today - 7 to 8 cavities. Nice. He brushes everynight, but, I will admit, I had not taken him to the dentist in quite some time, as Julia's appointments and my previous full time work schedule, really did not allow much time - and he never complained. But when I took my "break" from veterinary medicine, I scheduled lots of Dr appts.....Julia never got her four year check up - I guess since she is at the Dr weekly, I forgot, or figured if something was wrong they would have caught it.....and Jack, well, the dentist just wasn't on my mind. Well, Julia had her five year check up yesterday - the Dr was very impressed with her progress - all things considered...and today, Jack went to the dentist and was a trooper. He actually LIKED it! Little does he know what is in store for the next two appointments - lots of cavities to fill....but the Doc said he would give him some gas before the shots to numb his gums to do the cavities...so hopefully that will go OK. Next Tuesday - 8am.
Shawn wrote a wonderful letter today ("from Julia") that brought things into perspective for me. Not that I haven't felt or thought these things before, but it was very heartwarming for everyone who read it....I will post it here...
Dear Mommy,
I know today is a really hard day for you and it brings back a lot of bad memories. But I wanted to tell you some things that I hope will make you feel better and a little happier.
You feel like you lost me on that sad day four years ago. But you need to know that you really didn’t. The little girl you knew before that scary time is still here, and so is the little girl you know now; we are the same person! And I am a lot like you and that makes me really happy.
I do remember those first few months and couple of years after it happened. It was really scary for me and I could tell it was for you, too. Although I screamed a lot and was really hard to handle, it wasn’t because I didn’t love you. It was because I couldn’t tell you.
And I still can’t. I can’t tell you that I know how hard you’ve been fighting for me and to make me better and how much you have cried and how you almost gave up. I am so glad you didn’t! You have taught me more about being strong and fighting and love than you may ever know. I am also really happy that you have been helping so many people that had something bad happen to them.
I have really been trying to be closer to you and hang out with you more, and I know that you have been trying, too. It makes me really happy when we play together. Please keep trying and not looking at me as someone other than your little girl! The things you thought I would be doing or should be doing don’t matter so much. What matters is that we all have this amazing family; that I am getting better at who I am; and especially that I’m doing things no one said I could do. In a weird way, maybe that’s cooler than being able to brush my teeth or paint my nails right now. I have a lot of other things I am working on! And I couldn’t be doing all of these things without what you did for me. You need to know that I really am very happy!
I don’t really get it either, but somehow I do know that this is the way it is supposed to be. The other night I had a dream where an angel came to talk to me and she said not to worry, that it was all going to be alright, and that this was my path and your path and that no matter what we have each other and that He is watching us. I guess she meant the man in the white robe with all the pretty lights around him that was standing by her. It made me feel really good and that it really is going to be okay.
I said earlier that I can’t tell you what I am thinking, but I know now that I do have a voice. It is because of you, through you, and with you that I do. And we are going to keep doing amazing things, you and me, and everyone will hear us.
Because I am your little girl and you are my Mommy.
I love you,
Julia
Enough said....thanks everyone who still hangs in there to support us. We will all be fine! Today is just another day.
Susan, Julia, Jack, and Shawn
I spent most of the day in bed, after, FINALLY, being able to go into Julia's room this morning, with Shawn, to get her up. I haven't done this since the injury four years ago when Julia's father found her in her crib. The following year, I couldn't get her up, and thankfully Mark got her. Last year I had Shawn get her. And this year, I was able to go with him to get her. Her head popped up like a little gopher, and I felt better. I picked out her favorite dress for her to wear today to school. She looked like a princess!
Jack had a dental appointment today - 7 to 8 cavities. Nice. He brushes everynight, but, I will admit, I had not taken him to the dentist in quite some time, as Julia's appointments and my previous full time work schedule, really did not allow much time - and he never complained. But when I took my "break" from veterinary medicine, I scheduled lots of Dr appts.....Julia never got her four year check up - I guess since she is at the Dr weekly, I forgot, or figured if something was wrong they would have caught it.....and Jack, well, the dentist just wasn't on my mind. Well, Julia had her five year check up yesterday - the Dr was very impressed with her progress - all things considered...and today, Jack went to the dentist and was a trooper. He actually LIKED it! Little does he know what is in store for the next two appointments - lots of cavities to fill....but the Doc said he would give him some gas before the shots to numb his gums to do the cavities...so hopefully that will go OK. Next Tuesday - 8am.
Shawn wrote a wonderful letter today ("from Julia") that brought things into perspective for me. Not that I haven't felt or thought these things before, but it was very heartwarming for everyone who read it....I will post it here...
Dear Mommy,
I know today is a really hard day for you and it brings back a lot of bad memories. But I wanted to tell you some things that I hope will make you feel better and a little happier.
You feel like you lost me on that sad day four years ago. But you need to know that you really didn’t. The little girl you knew before that scary time is still here, and so is the little girl you know now; we are the same person! And I am a lot like you and that makes me really happy.
I do remember those first few months and couple of years after it happened. It was really scary for me and I could tell it was for you, too. Although I screamed a lot and was really hard to handle, it wasn’t because I didn’t love you. It was because I couldn’t tell you.
And I still can’t. I can’t tell you that I know how hard you’ve been fighting for me and to make me better and how much you have cried and how you almost gave up. I am so glad you didn’t! You have taught me more about being strong and fighting and love than you may ever know. I am also really happy that you have been helping so many people that had something bad happen to them.
I have really been trying to be closer to you and hang out with you more, and I know that you have been trying, too. It makes me really happy when we play together. Please keep trying and not looking at me as someone other than your little girl! The things you thought I would be doing or should be doing don’t matter so much. What matters is that we all have this amazing family; that I am getting better at who I am; and especially that I’m doing things no one said I could do. In a weird way, maybe that’s cooler than being able to brush my teeth or paint my nails right now. I have a lot of other things I am working on! And I couldn’t be doing all of these things without what you did for me. You need to know that I really am very happy!
I don’t really get it either, but somehow I do know that this is the way it is supposed to be. The other night I had a dream where an angel came to talk to me and she said not to worry, that it was all going to be alright, and that this was my path and your path and that no matter what we have each other and that He is watching us. I guess she meant the man in the white robe with all the pretty lights around him that was standing by her. It made me feel really good and that it really is going to be okay.
I said earlier that I can’t tell you what I am thinking, but I know now that I do have a voice. It is because of you, through you, and with you that I do. And we are going to keep doing amazing things, you and me, and everyone will hear us.
Because I am your little girl and you are my Mommy.
I love you,
Julia
Enough said....thanks everyone who still hangs in there to support us. We will all be fine! Today is just another day.
Susan, Julia, Jack, and Shawn
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