So, I have been working on this blog entry for sometime now and I just have been unable to put it all into words. I kept trying to put my into words how hard it is to be sick and still be raising a family and putting on a smiling face around everyone and just always acting like things are ok everyday even when they are not. Hating how much you second guessing yourself all the time when you never use to. Finally, after so many months and my sisters (THANK YOU Angie and Nicole!) helping to organize my thoughts here it is:
**just ignore typos**
It has been a rough year and a half. My family and I are now officially looking for a neurologist in a bigger hospital outside of Montana that might be willing to take on this "fluke" case that I have turned into. We have talked to UCSF so far. This blog also entails my part of a letter written to different hospitals because, I have no idea who actually reads this blog and maybe somebody knows somebody who knows somebody who is a neurologist/neurosurgeon or works with a larger epilepsy center that would find this interesting and wants to take on this case, you just never know. I never give up hope!!
Over the past year and a half I have come to learn that moms really should not get sick. It is not fair. Not that it is really ever fair that any ever gets sick, but this is about my journey an how my sickness has impacted my ability to take care of family, the family that I hold so dear to my heart. Here is the letter: (remember it was intended to be read by doctors)
"First off I want to thank you for taking the time to read my story. I will try to keep it short. The past year and a half has been the most difficult of my life. Prior to May 2012 I was a busy working mom in my mid-thirties. My days began with packing lunches and kissing my kiddos goodbye at the bus stop and then heading off to my job as a Head Start preschool teacher, working with low-income families and their children. A job I didn’t do for money or benefits, but because of the passion I had to help others. After work it was back home, homework with the kids, dinner with the family and bedtime stories. In the midst of these days, I volunteered with local Girl Scout Troops, I volunteered with Junior Achievement, I kissed boo-boos, took away bad dreams, drove kids to acting lessons, violin lessons, soccer practices, scouting events all while tending to teenage drama and just lived a typical, crazy, busy life. I loved it. In May 2012, I got sick and my world crumbled. As you will see from my extensive medical records the past year has taken a huge toll on me physically. As a professional in the medical field, you don't need me to explain how hard and painful having seizures and brain swelling can be. You don't need me to tell you how hard it is to deal with all the side effects of the various medications I take and how financially, physically and mentally draining they are. And, I don't even know if they are working. What I want to share with you is how hard this has been emotionally for me. How hard it has been for my family, mostly, my children. These are the things I hope you take from this when you consider helping me.
As a career woman and mother to six, I used to hold it all together. Now I can't keep anything straight. My kids make sure to write their important dates on the calendar because they know I will forget them otherwise. Even if I remembered to write these dates on the calendar they would be hard to read as my handwriting is not very legible because of my shaky hands. Spelling is tricky, speech can be a challenge and my vision comes and goes. As a preschool teacher my job was teaching kids how to hold a fork or point to the red circle, these things are difficult for me now. As a college educated career woman, it is tough to see these things I worked so hard for to be slipping away. I can't focus, I lose things, I forget important dates. All the balls I used to juggle so easily have fallen to the ground. I miss that career woman. I miss being a part of a work environment…contributing to the greater good. I miss being part of a community and helping others. It is strange being on the other side; being the one asking for help and charity. I want to be better so I can help others, instead of the other way around.
As a daughter, sister, wife and friend I no longer have the type of relationships I once had. I am forever grateful for the help they give me, but asking for help and losing my independence has been so difficult. I can no longer drive. If I need a gallon of milk I can't simply pick one up on my way home. I am 38 years old and if I need milk I have to call my mom to take me. If my children miss the bus, I have to call on someone in my family to please come and take them to school. I can't volunteer in their classrooms because that would mean having to schedule someone to drive me every week there and that is just too much to ask. I miss hanging out with my sisters just for fun and not for filling out Medicaid or Disability paperwork. I miss going on vacations with my mom or hunting with my husband and dad. I miss the things I can no longer handle on my own. My sisters schedule and take me to appointments, my mom and aunt run my errands, and my oldest daughter cooks the meals. My husband places the 911 calls when the seizures get too scary. I sit helpless as this all goes on around me.
The most difficult and heartbreaking part of all of this is the emotional toll it is taking on my kids and myself as a mother. My children's ages range from 7 to 19. They have seen more than their vulnerable ages need to have seen. They have watched me be wheeled out of our house on a stretcher twice now. They came to see me in the ER on their way to school. The hardest is the everyday things they see. What has become their new normal is unfair because we just don’t know what will happen next, because we have NO answers. My 8 yr old son opens jars for me and is carrying the laundry basket because I can't. I hear my youngest daughter on the phone with her dad while I'm in the middle of a seizure. I have to hear their conversation and her telling him "Yes, Daddy she's sitting down" and not being able to do anything. After the seizure ended having her ask me if I'm okay. She comes home from school and asks how many seizures I have had that day and if they were big ones. She is 7. These should not be her worries upon getting home from school. They have walked in and seen me laying on the floor…a scary sight for a child. My oldest daughter is 14 and her biggest concern should be who is going to ask her to the upcoming dance and if she is ready for her Algebra test. Instead she keeps track of my diet, my medications, looks after her younger siblings, helps them with homework, finds her own rides to activities because she knows I can't do it and is the one comforting the little kids when the paramedics come to our home. They are missing out on their childhood. They have had to give up all after school activities like soccer, scouts, and violin lessons. My son asked one day if I will ever be a "normal" mom again. This broke my heart. This is the hardest part of all of it. I look into their eyes and I see their smiles slowly fading. They are no longer the happy go lucky kiddos they used to be. I want to be their mom again!
Staying positive is getting harder and harder. I do it for my family. I am willing to fight and have been for the past year and a half and I have it in me to continue. I do everything I am told to do by my doctors. I do my own research, I am trying to fight. I want to see my children grow up. I want to go back to work. I want to be a wife again to my amazingly supportive husband. The problem is no one knows what I am fighting. There have been several medical opinions and countless tests but no one can give me an answer as to what is going on. It is hard to fight a battle against an unknown enemy. I need to find someone who can help me figure out what is going on and how to keep on fighting so I can get better. I want to get better with all my heart. I want my life back and I will fight for it. It is disheartening to hear "it takes time", "you will get better" and now be told it is all just slowly "getting worse". I really just need someone to find it in their heart to fight this battle with me. Thank you for your time. Thank you for reading my story and considering going on this journey to recovery with me. "
It just seems to be getting rougher, maybe it is just me. Maybe I am more emotional these days. (I seem to cry easily these days) One day after school, C and R came home from school and asked if we could donate money to their gym teacher so he could put in a climbing wall in their gym at school. I tried to hold back the tears, but couldn't. I haven't worked since May of 2012, I have doctor bills, and medications now and future bills and how do I explain this to a 7 and 8 year old?? They somehow just knew, they just turned and ran down to their rooms and brought their piggy banks and took out some dollars and change to take to school for the climbing wall. I just love these kids so much. They are always wanting to help.
How do I be part of car pool when I can't drive and Dave never knows when he is going to get off work? That makes it pretty unfair to the other families...we are always the "can you give me a ride?" people. Yesterday, a note for teacher conferences, came home from school with C, my first thought is, well, hmmmm who gets to go with me. Really that is Who drives. C calls last week with a tummy ache from school and needs to come home, how to I go get her? Kids need to go to doctor or dentist. We laugh about it at times, but it really isn't funny when mommy says "no, that isn't the right answer to a math problem or a spelling word," but really it is. The side effects of the meds are rough, I am tired, I am cranky, I don't want to eat, I don't want to cook, I sleep too much or too little. I have 4-6 seizures a day (sometimes despite 3 meds) it is pretty hard on me and the kids. I have headaches that knock me out for a few hours or even days. It is just a challenge these days. I miss helping S run lines for her up coming play and throwing the football with R and reading with C and the pepper eating contests with W, w, and D...oh how I miss those days. I even miss just being able to clean the bathrooms and go the grocery store alone and cook a meal without making a wreck or injury. Moms need to schedule a million events and I miss those days. Moms need to do laundry to wash that one special shirt because "I have to have it tomorrow."
Moms need to find the note in the bottom of the back pack that says "2 dozen cookies needed at school tomorrow". Moms need to wipe away tears when friends get mean. Moms just are needed.
I know most moms put tooooo much pressure on themselves, but it is all out of love for their family...
See, Moms shouldn't get sick!!
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| My job: Teach you right from wrong, and then help you realize that even if you decide to do the wrong thing, there will be consequences that you will have to face. |
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| My job: cry when I look back and see how little they all used to be. |
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| My job: cheering for you when you steal the ball from your dad and make the basket! |
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| My job: Teach you football cures a lot and Chicago Bears rule. |
My job: Cheer on the Packers???? |
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| My job: remind the kids to feed the cat (oh and then feed the cat myself & clean the litter box) |
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| My job: Take picture on first day of school and make sure they look like super stars!!! |
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| My job: Love the Tallest to shortest! |
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| My job: Make you do funny photo shoots at weddings. |
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| My job: understand this? |
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| My job: bake your favorite cake on your birthday every year. |
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| My job: Teach you that T-Rex's would eat cousins....watch out. |
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| My job: Teach you about your great-grandma and her sister and her brother. |
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| My job: Freak out when I think your head fell off. |
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| My job: Teach you how to do laundry. |
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| My job: Tell you this is me. |
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| My job: Let you stay up late at sleep overs with cousins. |
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| My job: Cheer you on as your brother teaches you to ride your bike!! |
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My job: wish with you that we could eat this gummy bear.
NOW......My daily job: trying to get back to this Mom......
"When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child." -Sophia Loren, Women and Beauty |
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