I started off my day with a ringing phone, news of Sara, and driving way too fast for my own good. My heart rate still hasn't come down, but now for a different reason.
I am in a bit of hell right now. Feels like a panic attack and I am definately stressed.
I don't know what I'm going to do. I try to go back to work, and something happens. While I'm at work, I think about her and feel guilty that I'm not with her, watching over her, helping care for her. I can't work...I need to take care of her...be there for her...ensure she gets what she needs. But I can't NOT work...I'm a single parent with a teenage son and he worries about what is going to happen to us...
I was on my laptop until about 4am looking up rehabilitation modalities, stroke research, rehab hospitals for locked-in patients, rehab for ventilator dependence...I was even looking up hospital beds and equipment...what if the best care for her is in Chicago, or Detroit (Detroit has the #1 brain researcher specializing in Locked-In stroke recovery/Chicago has the #1 stroke recovery hospital in the nation) She's 19 years old. A whole world of life ahead of her. She can't just go to a nursing home with 80 year old end of life stroke survivors...
I just want to sell everything. I so don't care about "stuff". I just have to get her better, and the best chance of recovery/rehabilitation. I'll look at grants, whatever. Hey, maybe that book by that goofy guy with all the question marks on his pajamas...Maybe I can sell and organ...UC Davis wanted some...
I've been sitting here kicking myself. I inherited some money when my grandmother died over 10 years ago --but I was so stupid and bought a business. I didn't know what I was doing and lost my ass. If I had listened to my Uncle Sim I wouldn't have done it and I would have saved that money, or invested it. I could be taking better care of her, and Michael for that matter. But I was stupid and now I'm paying for it...and she's paying for it.
Don, honey, play the lottery for me? I need a sugar daddy to take care of me so I can take care of my baby girl. (I'll even let you call me your "ho" and slap me around a little bit... ) LOL
[I know...sometimes I make inappropriate jokes sometimes...but right now I literally want to scream and break stuff...i'm so frustrated...so...this is the alternative...]
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Kristina
ReplyDeleteYou know what to do and you're doing it. Researching, working, being by Sara, responding to early morning calls, being Micheal's mom, worrying non stop. Total overwhelm. When you get a crazy wake up call after staying up until 4am it's going to feel awful. So here's what you do, and I know you know this. You get through this day, this crisis and you sleep if you can and rest if you can't. Money that's gone is gone, how well I know that; kicking yourself won't bring it back.
As much as possible take one thing at a time. I tell myself these things and I'm telling you and like I said, I know you know but sometimes it's helpful to hear it again.
Love
Nanci
You can't beat yourself up about that, the money that is. Life is a series of choices we make and we all have regrets about the past. That's just the way it is. Had you invested the money, I imagine you thinking that if only you had followed your dream and opened your business, you would have so many more resources at your disposal...
ReplyDeleteWe don't know each other but I can see that you are doing amazing things for your daughter. You seem to have an instinct for just the right thing. Keep going and know it is right. Try not to second guess yourself. You're doing all right.
Dear Kristina,
ReplyDeleteIt seems unreasonable for you to expect yourself to be able to do any kind of work that requires concentration right now - let alone run a business. I just don't think it is humanly possible under the circumstances. I believe that Sara is elegible for SSDI, which isn't alot of money, but it is a steady monthly income. Perhaps you could talk with the social worker at the hospital and see what she/he knows about the possibility of you going out on stress-related disability yourself. Perhpas between the 2 disability incomes you could get by until things improve, or at least stablize enough that you can concentrate enough to work again. Can you look at the possibility of seeling your business? I don't even know what you do - but I DO know that NO mother could work at anything that requires anything more than going through the motions at a time like this, and you must try not to be hard on yourself about it - or fight it - but try instead to find other alternatives, at least temporarily.
Moments of feeling insane are sane when you are living in a state of constant crisis as you have been for weeks now. Literally, teetering on the edge of a cliff. How magnificent that you can still count your blessings! Remember also to breathe, and to feel your feet on the ground. You are a wonderful mother, doing everything that can possibly be done. Pleae try to take care of yourself as well. And thank you so much for taking the time to share your journey with those of us who are trying to hold you up with our love, our belief in Sara's strengths and in the power of things we don't understand, and who want you to know you are not alone in your battle for Sara's future.
-Leslie Hansen
Kristina,
ReplyDeleteThere is a program, I believe it is offered through the state or Federal Government where you can take care of Sara and receive pay through a Care Giver program. Call Social Security Administration for this.
I was born and raised in Chicago and I was born with a Genetically Inherited Autoimmune disease of my Spinal Cord. All of my spinal cord disks:(C-1/C4 etc...and L-1/L4 etc..)are rupturing. Although I have had very good neurosurgeons here in California for my surgery, it did not work for me, therefore I may consider going back home to the University of Chicago and the Rehabilitation Institute of Chicago for more surgery (There are world renowned neurosurgeons in Chicago.) There are many programs where they may cover expenses, hotels etc...Very midwestern! My medical challenges caused me to change my career five years ago. I used to be on my feet 10 hours/day,(ironically research scientist) now I have a career where I have many opportunities to sit whenever I want.
Also, there used to be a non profit program: "operation Angel". It is a medic helicopter that takes the patient and family to other states for consultations/surgeries with world renowned physicians.
I commend you for all that you are doing. I am just giving you some options.