So my darling Princess informs me again, that she wants a Princess Party for her birthday.
Oh my head hurts from this request...
There are SO many things to think about when holding a party for her. Last year, her party was serious overload. I invited way too many kids, way too many bodies in my house, way too much pizza was ordered, a beautiful yummy birthday cake that the birthday girl had a bite of and got sick...
This is still a huge learning process for me. Holding a party for a typical kid is hard enough, but holding a party for a special needs kid and her typical and special needs friends is even harder.
This year I don't want to hold it in the house as it is not suited well for all R's friends. Two stories and push chairs and wheelchairs don't go together well. I don't want to stress my friends out this year by this. I want people to enjoy the time.. and last year it was chaos to say the least!
So I started searching for places to have a Princess Party... with her closest special friends. The couple places I have found have packages, with finger sandwiches and tea, juice, and a birthday cake. Sounds great huh? Well not in our world... LOL... I mean why pay for those things? She is not going to eat a sandwich and most of her little friends won't either (most all tubie fed too). Others are on gluten free diets... so I really need to find the right place.
I've contacted the couple of places I thought looked like could work, told them our situation to see if they can tailor make a package for me. I hope one of them can help and then hope it doesn't cost an arm and a leg.
I wish I had some sort of other brilliant idea... we can't do anything outside as it will be too hot out for her and her friends... Why do we have to live somewhere that is so hot?!! LOL
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Sunday, March 27, 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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