Do you ever feel like your life is a TV show like Candid Camera or Punk'd?
That someone has got to be filming your crazy ass life while others are sitting at home laughing their asses off?
I swear that is what HAS to be happening to me. I mean what else could it be? My life is not that funny, so move along!
Yesterday I woke up at 530am to get ready to take Reiley for another surgical procedure at Phoenix Children's. We walked out the door at 6:10 for our journey. I forgot her feeding pump and luckily remembered as I pulled out of the garage, ran in and grabbed and on my way.
Oddly I had this really nervous feeling driving on the 347. I figured I was just nervous about another surgery for Reiley... but maybe I knew about what was to happen later on the 347.
Approaching the I-10 left turn lanes, I was hit from behind while I was stopped.
This person did not even get out of his vehicle to ask me if I was OK. I called 911 and 15 - 20 minutes later someone arrived. I hit my head pretty hard on the back of my head rest and my head was hurting. Reiley was all snug and safe in her car seat.
The police at least 'fast tracked' me as I had to get Reiley to the hospital and she had been off her feed since 6am. Fast tracked... I left about 740, already 40 minutes late for the hospital. I called the hospital to advise them we were going to be late right after hanging up with the police.
Surgery went well but of course they had no beds available and we waited in recovery for a bed. My head was killing me, I took lots of advil but nothing helped. Reiley did so well that around 5pm the nurse asked me if I would just like to take her home. I said yes, I really needed to get myself checked out anyway and Reiley was doing so well.
So at 6:10pm we left, I got her home. I got her settled in with daddy and then left for the Urgent Care. They got me right in. I have a bump on the left side of my head where I hit the head rest and whiplash - pain meds and muscle relaxer prescribed, filled and back home.
I'm pretty sore today, my head does not hurt nearly as bad so that is good. Reiley is doing well pain wise, her g-tube is very gross looking.
So I decide to go up and take a shower as I have an attorney coming to the house about the accident. I start coming down the stairs and what do I smell?
NAIL POLISH!!!!
OMG, There is nail polish all over my computer, my mouse, the end table, the couch, the ottoman, the wood floor, Reiley's baby with the tubie, her little plastic chairs a blanket of hers some stuffed animals...
SERIOUSLY Mr. Funk... I am done filming for you. Can you please move on to some other poor soul?
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Wednesday, March 2, 2011
Thursday, February 24, 2011
How do I do it? How can I not?
Often I hear from people "I don't know how you do it" and all the while I'm thinking well how can I not? Really who could not take care of their child? I know there are mothers and fathers out there that shouldn't be parents... so I guess those are "who could not"...
This post will be long I'm afraid, so I will apologize now.
I am a woman of a unique family... every family is unique though... Our uniqueness is straining on every aspect of our lives - Financially, emotionally, our relationships within our family, relationships with friends, specialists, outside family, jobs, life.
It is estimated that the divorce rate is double in families with special needs children than those without special needs children. The stress puts a huge strain on the relationship. Often times one parent is caring for the child while the other parent is trying to support the family. What is often forgotten is the parent caring for the child - that is their job, their every waking, breathing moment, even sleeping moments. Many of us forget to take time for ourselves, or there just isn't time for ourselves.
While your friends may be able to sympathize with you, they will never truly understand what you go through day in and day out, unless they themselves are in the same shoes. Often times your relationships with friends not in similar shoes, dissipate, until they are no more. I can't tell you how many friends have come and gone in my life since the troubles started with Reiley.
Reiley is our daughter, who is currently 4 years old, will be 5 in May. Reiley has an invisible disease - Mitochondrial Disease. Reiley is not visibly disabled, I guess leaving many people to think I exaggerate about how difficult life is for her/us. Well it's not an exaggeration. While I don't have an outwardly visually physically disabled child - she can walk, she can talk, she is very intelligent - she is chronically ill, her GI system does not function properly and does not allow for her to be physically able to eat by mouth - thus needing to be fed by a tube in her belly and a feeding pump. Yes, she has the mechanics of chewing and swallowing (for the most part) but that does not mean her body is physically able to allow her to eat by mouth. She has energy issues, she has immune issues, she has behavioral issues - beyond those of being a 'typical' 4 year old. She has ADHD, anxiety, OCD tendencies and probable mood disorder. She is a roller coaster of emotions - beyond again being 4 and beyond being female. We spend so much time living in our other 'home' in a hospital room at Phoenix Children's.
These special needs are straining. It is hard (at least for me) to balance my personal relationships with everyone else demanding, wanting, desiring of me, and my NEED to take care of her. As well as to try and take a moment just to myself. It is impossible, I am only one person and I haven't figured out how to divide myself up like that and thus caring for the one that needs me the absolute most because without me, she would not be alive... no one would be fighting the daily fights to get her the supplies she needs to live, the special equipment to make her day to day life a better quality whether she needs it daily or only with those down days. No one would be fighting to get her special services to get her caught up to her peers - to be able to walk, to talk. No one would be searching the ends of the earth to find out what was wrong with her and getting specialist to listen and finally figure out what was going on with her.
Because her health is always up and down, it doesn't allow me to have a normal out of the home job... it is even hard to have a part-time work from home job. With therapies several times a week, specialsist appointments all the time, surgeries, and unexpected weeks in the hospital - it makes it very challenging.
Does this mean I do not take care of the rest of my family, of course not - I am here, I am supportive, I do attend their functions when the availability of me being able to do so is there. I make sure everyone has clothes on their backs, food in their bellies and support them the best way I can - the best way I can. I am not perfect, obviously and I shouldn't be... nobody can be.
So this is our life, my life... most of my social interaction is via the computer. Rarely do I have personal interaction with people besides therapists and doctors. It is not easy to attend parties and play dates of those without other special needs children. As Reiley is getting older, more questions are asked by other children, stares from them and/or their parents. The absolute worry I have of the children being sick - even the simpliest of colds can and has caused Reiley to spends weeks in the hospital. Then the social incorrectness of my daughter is challenging for me - because while I really don't care much of what people think about me - I do care about what they think about her.
So in order for me to have 'some sort' of social life, I spend a lot of time on the computer, social networks, forums, online support groups. I have tried to attend a dinner function with other special needs moms that is held every month, but financially that is not always possible. Also that puts another kind of strain on the relationship of my family - which is very hard for me to understand.
My outlet is also coupon shopping - its also my other job in my opinion, my way to help stretch the money that does come into the home.
Anyway, that is just a little more insight into me, I guess... as well as getting some of this off my chest.
Hope you all have a good day, and I'm sure if you were in my shoes.... You would be able to do it too and if you are... I know you already do!
This post will be long I'm afraid, so I will apologize now.
I am a woman of a unique family... every family is unique though... Our uniqueness is straining on every aspect of our lives - Financially, emotionally, our relationships within our family, relationships with friends, specialists, outside family, jobs, life.
It is estimated that the divorce rate is double in families with special needs children than those without special needs children. The stress puts a huge strain on the relationship. Often times one parent is caring for the child while the other parent is trying to support the family. What is often forgotten is the parent caring for the child - that is their job, their every waking, breathing moment, even sleeping moments. Many of us forget to take time for ourselves, or there just isn't time for ourselves.
While your friends may be able to sympathize with you, they will never truly understand what you go through day in and day out, unless they themselves are in the same shoes. Often times your relationships with friends not in similar shoes, dissipate, until they are no more. I can't tell you how many friends have come and gone in my life since the troubles started with Reiley.
Reiley is our daughter, who is currently 4 years old, will be 5 in May. Reiley has an invisible disease - Mitochondrial Disease. Reiley is not visibly disabled, I guess leaving many people to think I exaggerate about how difficult life is for her/us. Well it's not an exaggeration. While I don't have an outwardly visually physically disabled child - she can walk, she can talk, she is very intelligent - she is chronically ill, her GI system does not function properly and does not allow for her to be physically able to eat by mouth - thus needing to be fed by a tube in her belly and a feeding pump. Yes, she has the mechanics of chewing and swallowing (for the most part) but that does not mean her body is physically able to allow her to eat by mouth. She has energy issues, she has immune issues, she has behavioral issues - beyond those of being a 'typical' 4 year old. She has ADHD, anxiety, OCD tendencies and probable mood disorder. She is a roller coaster of emotions - beyond again being 4 and beyond being female. We spend so much time living in our other 'home' in a hospital room at Phoenix Children's.
These special needs are straining. It is hard (at least for me) to balance my personal relationships with everyone else demanding, wanting, desiring of me, and my NEED to take care of her. As well as to try and take a moment just to myself. It is impossible, I am only one person and I haven't figured out how to divide myself up like that and thus caring for the one that needs me the absolute most because without me, she would not be alive... no one would be fighting the daily fights to get her the supplies she needs to live, the special equipment to make her day to day life a better quality whether she needs it daily or only with those down days. No one would be fighting to get her special services to get her caught up to her peers - to be able to walk, to talk. No one would be searching the ends of the earth to find out what was wrong with her and getting specialist to listen and finally figure out what was going on with her.
Because her health is always up and down, it doesn't allow me to have a normal out of the home job... it is even hard to have a part-time work from home job. With therapies several times a week, specialsist appointments all the time, surgeries, and unexpected weeks in the hospital - it makes it very challenging.
Does this mean I do not take care of the rest of my family, of course not - I am here, I am supportive, I do attend their functions when the availability of me being able to do so is there. I make sure everyone has clothes on their backs, food in their bellies and support them the best way I can - the best way I can. I am not perfect, obviously and I shouldn't be... nobody can be.
So this is our life, my life... most of my social interaction is via the computer. Rarely do I have personal interaction with people besides therapists and doctors. It is not easy to attend parties and play dates of those without other special needs children. As Reiley is getting older, more questions are asked by other children, stares from them and/or their parents. The absolute worry I have of the children being sick - even the simpliest of colds can and has caused Reiley to spends weeks in the hospital. Then the social incorrectness of my daughter is challenging for me - because while I really don't care much of what people think about me - I do care about what they think about her.
So in order for me to have 'some sort' of social life, I spend a lot of time on the computer, social networks, forums, online support groups. I have tried to attend a dinner function with other special needs moms that is held every month, but financially that is not always possible. Also that puts another kind of strain on the relationship of my family - which is very hard for me to understand.
My outlet is also coupon shopping - its also my other job in my opinion, my way to help stretch the money that does come into the home.
Anyway, that is just a little more insight into me, I guess... as well as getting some of this off my chest.
Hope you all have a good day, and I'm sure if you were in my shoes.... You would be able to do it too and if you are... I know you already do!
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