Friday, May 4, 2012

I didn't read to my daughter

I really am in a bad space.
Still insanely tired after Sunday night's sleep clinic affair. Add to that the fact that my leg is hurting lots today, after physical therapy, and life is looking depressing.

It is that space that gets deep, deep into sadness because I told my girl that I am not going to read to her tonight because I just don't feel well. (how much has she heard that?)

I just should've done it. Just gone past my own difficulties and rise above. But I didn't do that.
*Now* I am crying (sometimes hysterically, while Robert teaches our son his homework) about it. Now, when she is fast asleep. I'm so sorry, Shiffy. I'm so sorry.

At the very time she was asking me to read to her, I was recovering from spending far too any hours on my feet, *after* physical therapy. I should've quit the kitchen before I did (challot and pizza), but I didn't, so consequently, the pain was all I could deal with at that moment. So I said no.

I HATE being the person who has to go through all these surgeries and tests and health issues, while all the while trying to raise my children. They are growing up. I want to *be there*. I only want to be there.

Sometimes it feels so random. I use phrases like "the hand I've been dealt", or "it's not in the stars today". It's when I feel my darkest that I leave Hashem out of my life.

I'm half a mother, and half a wife. "I'm a burden to myself", I just heard myself say.
I honestly feel like sometimes I am actually causing harm to my family for having these problems.

I will not do another elective surgery. I WILL NOT DO IT.
I don't care which amazing angel of a doctor tells me that it may solve the problem without drugs. >>>>MAY<<<<<. That is the operative word. It also may not. It also may cause more pain than I had before, who knows? Pain... and medicine in general, is not a science. It is choices. I have a choice to stay with the nerve pain I presently have, and not try some dangerous procedure to possibly correct it. The medicine I take for that doesn't work anymore. I started off at 150mg of the Lyrica per day, and now am up to 900mg/day. And the pain bursts through without shame.

..."you are young. I don't want you on such strong medicines which will harm your liver and kidneys at a young age. If I were you, I'd consider doing the surgery".
-Sarah's pain doctor
..."would you recommend your *wife* to go through the surgery while trying to raise your four children?"
-Sarah, angry. Not at the doctor, but at her life.

While I wait for the most recent surgery to give me a day that I experience less pain than I had beforehand, I am supposed to consider the one surgery I have avoided these five years? The one to close Gapey. To pad the severed nerves that are hiding behind the thin skin grafts. To remove those grafts and close the gaping hole it leaves behind. To close it with fat deposits and my own skin. My own skin that would have already have been stretched over the previous month with skin expanders.

No thank you.
I cannot go through another elective surgery.


  1. I'm so sorry that you are having such a hard time right now. The only thing I can think of is to quote Kathy E. You can't go back so is there something you can learn from the situation? I'm not sure if or what that would be. It does remind me of a time when I was exhausted. I remember just sitting with my 2 yo daughter on my lap while we watched a tape. It was all I could do to be there with her but my arms were around her and we were together. I was not in pain but I was doing all I could. Sometimes we have to be as creative as possible (and I know that you know this and have done it many times.)

    Remember, your children are seeing you fighting this dis-ease. Yes, they are seeing you in pain and exhaustion. You still make your family a priority, you get down but you pick yourself back up, look to God, and do what you need to take care of yourself however hard that is. You are a woman of strength and they are very lucky you are their mother. You are not perfect but you love them and they know that.

  2. Hugs too. XXXXOOOO
    You are very hard on yourself. I didn't read to my daughter tonight either. Or last night. Or even this week. (VERY hectic week.) Sometimes it goes like that. Especially after challot and pizza, there's only so much energy at nighttime. I think Sandra's advice of holding each other is a good solution. You ARE there for her, just not in the way you may envision. A hug goes a long long way.
    lots o' love Devorah from NJ

  3. NF changes someone’s life so much. I often find myself referring to events in my head as before NF or after NF. For me it’s been almost 3 years and I still find it in my thoughts daily. I know every case of NF is different and while I have lost nerve function in my leg, I do not know the horrific chronic pain you suffer from. You have already done the impossible for your children. You fought through the NF (not an easy task) so that they could have their mother growing up.

    There are times when I wish the NF never happened or that somehow the outcome might have been better. I haven’t found a solution for those times yet, except to allow myself the time to grieve whatever part of my “before self” that I am missing. On the flip side, every holiday, birthday, special event, new friendship is a reminder that I am so lucky to still be alive and get to have these experiences. I wonder if you would find it beneficial to write down at the end of the day the small everyday moments (a smile, laugh, joke, hug) you are so grateful to have experienced.

    The surgery to close Gapey may be a huge benefit to you down the road, so never say never. I certainly understand your need to say not in the foreseeable future. Sometimes the doctors need a gentle reminder of your reality. I had one doctor ask me if I felt that something was normal and I told her I couldn’t even remember what normal felt like anymore.

    Lastly, a simple quote that I find helpful sometimes, “If someone told you to your face that you weren’t good enough, how would you react? Then why put up with negative self-talk?”

  4. Sarah,

    Remember "Drawers" this week!! This is exactly what we were talking about with Michal. Like the woman who couldn't/wouldn't wash her daughter's shirt. This is your erua--reading to Shifra. The idea, it seems to me, is to understand the range of options we have in making a decision. It might be that even with the knowledge of the range, we make the SAME decision (i.e., I will not wash my daughter's shirt), but it is made with a broader range of possibilities. What other possibilities are there in this situation? I can think of some. But I'll let you do the work. For yourself. And, remember, think positively!! Even though its difficult. No self criticism.

    Love, Miriam

  5. {{Hugs}}
    Leiah Elbaum

  6. You're right. Not an easy read. But a good one. good that you remember you have choices even when it seems like choosing between bad and worse. Good that you have such a loving, supporting and understanding family. Good that even though sometimes you lose your faith, you find it back and don't give up. Good that you can feel free to write your feelings, good and bad.
    -One small piece of advice just in case you haven't thought of it already: do at least some of your kitchen work (like kneading dough) sitting down...
    Shanni Reiff Profesorsky

  7. From The Secret (Rhonda Byrne):
    Most people don't realize how much passion they put into what they don't want. When you speak to a friend and you tell them all about an "awful" situation, you are putting passion into what you don't want. When you react to an event negatively, with the response that it is "terrible", you are putting passion into what you don't want.

    You are a beautiful passionate being, so make sure you direct your passion wisely.
    Edna Oxman

  8. thank you everyone. Such wise words from such wise women. These things help me quite a bit. hugs!!!

  9. Ok, Sarah. Not at this time, you don't do the surgery. But there may come a place in your life where you will. Please be kind to yourself. You are doing the best you can with all you have to deal with. I have failed my children, and I don't have the incredibly hard situations that you do. No mother is perfect, but your love for them is perfect. And that is what will count in the long run.
    Hugs, and more hugs,