I do not like to complain and I do not like to feel
weak. It seems to me that the more you
complain, the worse things seem. Then
they actually get worse. It is not just
about complaining out loud either it is also the complaining you do in your
head. I try to combat this cycle by
thinking positively and comparing my situation with others that have it much
worse. This usually works for me. Not wanting to feel weak is a separate issue
but works in the same way. If you start
down the slippery slope of helplessness, you are at the bottom in the blink of
an eye.
My problem right now is that there is so little room for
error.
The smallest things (or what has generally counted for small
in my mind) now nudge me with their gnarly little toes down that slope as I am
grasping and clawing for dear life just to stay where I am. A good friend reminded me that I started this
blog to help myself. It is hard to be
honest. I want to be that strong,
positive person even here where there is a strange sense of freedom and safety
but I also feel that nudge and I will do whatever it takes not to slip
further. If that means talking about how we have no money or talking about how weak I feel or talking about how I am feeling sorry for myself right now than that is what it means. I will rise above it.
Life sucks right now.
I have given up my career (yes temporarily). It is hard for me to not be a teacher. I have been teaching for thirteen years. Although it was not always wine and roses, it
fulfilled me and made me happy. I could
go to bed at night knowing I was doing good.
The notes, emails and comments I have received from former parents since
I announced my resignation are heartfelt and they have one theme in common… I
did good and I made a difference. I truly believe that all jobs have their
importance and meaning. My husband is a
plumber for example… I mean really, where would we be without toilets and
running water? I find meaning in my
current job of bartending and serving. I
look at each table or customer I have. I
think about what brought them out to dinner, what trials and tribulations they
have suffered, what they might be celebrating and I think about how I can make
that experience better for them. Or even
how I can make their day better by simply being kind or making sure they have
full drinks or giving them good food that will nourish their bodies and souls
and make them feel good. I can hear the
groans now! I know it is cheesy and over
the top but it is really what I think so just suppress your disbelief and keep
your eyes in your head. But making an
impact on a child’s life is special and it gave me meaning. For now, I have to give that up. I also have to give up the money that goes
with it which is very scary and very hard and makes me a little resentful. I do not want to have to tell my son that he cannot get the Marvel Comic ice pops because they are $3.99. But the truth is, I can still get him the Jolly Rancher ones that are on sale for a dollar and that is something.
I have a headache twenty four hours a day, seven days a
week. I take pain killers for them. The amount I have to take just to get through the day without vomiting just reminds me of my mother's addiction which eventually killed her. The pain makes me irritable and it never goes away. That is not exactly true. It went away for about 15 minutes the other day and I was so excited. If you have ever taken hard core pain killers you know the joys that go along with them. Constipation, stomach upset, etc etc. Good times my friends, good times. The stress and exhaustion from worrying about Lil and money and the twins and my husband and the late nights three times a week are causing all sorts of other stuff to go wrong with my body too.
My daughter is sick. LillyAnna still vomits every night. She is no longer vomiting twenty times a day and that is good. But I know, and this is not me being negative, it will come back. And if the pattern stays true to form it will be even worse next time. We have avoided doing something more drastic because she gained 0.1 ounce at her last appointment. When I asked Dr. R what else we were going to do he gave me a look that said "this is as good as it is going to get Gina". The medications we are giving her are awful. She is in a good cycle right now but a good cycle still means elevated temperatures, complaints of pain in her arms and legs, vomiting, bloodwork, hair loss, injections, medication schedules, trouble sleeping because of some kind of discomfort and the great unknown of this whole disease. This all starts to seem like normal but when I tell someone the story I realize how truly remarkable it is. She is the seventeenth reported case in the whole world! We know nothing. There is no help out there for us. No website, no information on the internet, no "this is what you can expect", no foundation, and the only support group has become a bit of a life line and that is Chronically Cool Families group at AI or what I like to call The Island of Misfit Toys.
I was almost in tears there the other night. Sometimes I just feel like maybe I am crazy. People look at me like I am nuts when I tell the story, I say she is not feeling good or describe how we know NOTHING. Especially when she is running around looking and acting like the most perfect baby alive. I shared this during the group and I will be damned if not every parent sat up a little straighter and started nodding until finally my good friend said, "Gina, we all feel that way." At least I knew I was not crazy but it is also scary that my situation fits in with those situations because those kids are sick. And then I remember that my kid is sick.
I feel guilty for complaining. My baby goes home from that hospital. My baby is not dying. She can walk, she can breath, she eats, she is smart, and on and on. Then I chide myself for feeling guilty because I know that she is still sick and that this is still traumatic to my family. My son is a mess with worry. How does a four year old who is smart and intuitive handle all of this, what is it doing to him? I don't know and I hope he will find a way to channel it in a positive way but I still worry. You can see it in his eyes, he knows too much. The therapists tell me not to talk about it in front of him. It seems we forget too often.
I am not who I used to be. Listen. I will be honest. I am the friend who always forgets your birthday but buys you gifts that suit you for no reason. I am the friend who will not call you back because I just simply forget but I know the ins and outs of your family and I pay attention. I am the person who is over generous because I just like to make people happy. Lately, I forget even more. Pay less attention. Say the wrong thing. REALLY never call back. And has no money. Who am I?
And even though we do not have the money for it we are having a big party for her birthday. Last year we celebrated her birthday at AI and they did an amazing job of making it special. But we were in the hospital. This year we are not in the hospital and we are not in the same place we were so we are going to celebrate. Thank you to all of you who are coming out to help us do that and thank you to all of you who are going to bring stuff (you will be getting a request soon grandparents! LOL!). We are celebrating a very special little girl and her brother and sister too. Just pray it does not rain and we do not fill the pool to bursting (we have VERY large families:) Actually, let's fill it and make it the most fun party they have ever seen!!
I am sorry. I am sorry I have to let you all buy me things, I am sorry I can't concentrate fully on the important things in your life. I am so sorry I do not have the emotional energy to share your hurts. I want to, I really want to. This is just really getting to me and it is getting to my whole family. It just keeps going on and I am getting so so tired. I don't mean to give myself props but I play it off well. I do not complain (save for this whiny post), I stay positive and I do whatever I have to in order to continue to give to other people and be the person I was. Because of this and as time goes on, people are beginning to treat me as if my life is normal. Like this is all a choice. I cannot blame anyone. I did ask you all to do just that and I stand by it. I cannot continue to live life in crisis. This is our life. No matter how hard it is, it is life and we have to live it. I am hoping that by getting this all out I will be able to get my head out of my ass, stop crying and feeling sorry for myself. Most of all I would like to stop feeling angry. I am angry and hurt. It does not feel good. I like it better when I can let things go. So this is my rant. I am letting go... right here and right now. I am probably going to cry for a bit before bed but when I wake up tomorrow I am going to choose to have a better day and that is that.
