Sometimes I get asked what is the hardest part of being the mother to a special needs child?
For me it was experiencing the change in dynamics with certain relationships whether it was friendships or family. To tell you the truth I really shouldn't have been all that surprised. I witnessed this change when my mother died. I'm sure you can relate...when you lose someone so close to you in the begining everyone that has ever known you or your loved one shows you so much support and love.
You get the phone calls, the cards, the GOOD food (and I do mean good),the visits, kind words (for example: We are here whenever you need us..You are so strong.. We will get through this together, I'm not going anywhere..blah, blah, blah). As soon as the funeral is over all that support and love goes away. No matter how close someone was with your loved one or with you. There are no phone calls, no visits, NO FOOD. You are left all alone to deal with your new reality.
After I had Calista, and it was confirmed that her condition( in the very begining of her life) was critical. It was like a flip of a switch. Okay, I'll admit I changed when my daughter was born. The whole experience was a traumatizing nightmare for MONTHS! I lived in total crippling fear of whether or not my daughter will make it to the next day.( Believe me there was moments when it didn't look promising) So for ME during that time MY ONLY care and focus was my family. I was suffering with soo much bottled up pain in addition to new pain that I didn't have time to socialize or stay connected with my friends and family.
I know this is wrong... I can be a bitch i'll admit that... but during that time I did not care about anyone else's problems. I honestly felt that whatever my friends were going through it's nothing in comparison to what I am going through right now so I didn't want to hear it.
Not only did I not want to hear it but I didn't want to talk about what I was going through either. For me saying out loud that my daughter was really sick was really difficult. It was paralyzing the rare times I did communicate with friends and family because saying it out loud was also me excepting that this is actually my reality.
There were some friends in my life at the time who had issues with my lack of communication. Some felt that I should have kept them posted on what was going on. Others felt that I was wrong for disappearing and not being available to be there for them in their times of need. However, I felt their feelings were bull shit!
I know what you're thinking, and I get it! ....I can be a BITCH!
But you have to understand, people cope with pain differently. I have been told that I was so strong to go through all that I went through and still be standing, but the truth is... the way I handle stress, and grief is by shutting down. I have to SHUT DOWN!
Shutting down is my brains way of protecting my sanity. After my mother died and I saw how alone I really was, I disappeared from my friends. I needed to hide myself while I was weak until I was ready to stand strong again. My long time friends were use to this behavior. They experienced this when my mother died.
Of course they didn't like it!
Of course they wanted to know what was going on with Calista!
But they never pressured me about it. They never tried to make me feel guilty, or like I was a bad friend because I didn't want to talk or be around them. Above all, they never tried to tell me how to respond or how to handle what was going on in MY LIFE.
However, there was some "friends" that did feel a certain way about how I reacted to what was going on with ME. It was as if they were offended that I wasn't telling them the details of Calistas fight so they could go share the information with other people and for that they are not in my life anymore.
You have heard the saying before: It takes a dark hour to know who your true friends are.
Although it was disappointing. I am greatful they are no longer in my life.
In addition to friends being different...I experienced family being different.
During my pregnancy and the discovery of Calista's health problems, my husband and I shared the news with family. When Calista was born they were fully aware of her critical condition, and my husband and I fears and concerns.
Yet, there were some friends, and family (the people we least expected) that were nowhere to be found. There were no phone calls to check in on us, no visitors, no expression of support or concern for our little baby girl, no expression of care at all.
Even when my husband (because I wasn't in a state of mind to do so myself) would reach out to them in search of a listening ear. He would get no answer, and no returned call, and this is FAMILY I am talking about.
For me it didn't really effect me too much until I saw how hurt my husband was about the lack of support we were given when Calista was born.
I love that man so when someone hurts him it's like they are disrespecting me.
I was used to not having support when I needed it most, but this was new for my husband.
I am only sharing this because I know there is someone out there who is struggling to stay afloat mentally, and you are doing it all alone.
Maybe you don't have a spouse, or a friend, or family to encourage you and it HURTS!
Believe me I understand, but if I can tell you anything from my personal experience.
I want to tell you (WITH ALL DO RESPECT FOR MY FAMILY ND FRIENDS)....
YOU DON'T NEED ANYBODY TO SURVIVE!
All you need is your FAITH!
Your faith in GOD (whatever spiritual belief you have)
Your faith in the future (overcoming obstacles and achieving your happiness)
Your faith in yourself ( you are so strong and so powerful in your own right. Nothing and no one can defeat or distroy you...try as they may....It is impossible!)
What I have learned and this is a fact......
that FAITH is worth more than anything this world has to offer, and without faith it is impossible to acheive the unacheivable..... BELIEF is powerful!
Although I am a loser....I lost my mother, two babies, and my dream job, some irrelevant "friends"
I am not done fighting or striving for better, because I BELEIVE
that with or without support I will survive...
better than survive I will win eternal happiness in the end!
For me it was experiencing the change in dynamics with certain relationships whether it was friendships or family. To tell you the truth I really shouldn't have been all that surprised. I witnessed this change when my mother died. I'm sure you can relate...when you lose someone so close to you in the begining everyone that has ever known you or your loved one shows you so much support and love.
You get the phone calls, the cards, the GOOD food (and I do mean good),the visits, kind words (for example: We are here whenever you need us..You are so strong.. We will get through this together, I'm not going anywhere..blah, blah, blah). As soon as the funeral is over all that support and love goes away. No matter how close someone was with your loved one or with you. There are no phone calls, no visits, NO FOOD. You are left all alone to deal with your new reality.
After I had Calista, and it was confirmed that her condition( in the very begining of her life) was critical. It was like a flip of a switch. Okay, I'll admit I changed when my daughter was born. The whole experience was a traumatizing nightmare for MONTHS! I lived in total crippling fear of whether or not my daughter will make it to the next day.( Believe me there was moments when it didn't look promising) So for ME during that time MY ONLY care and focus was my family. I was suffering with soo much bottled up pain in addition to new pain that I didn't have time to socialize or stay connected with my friends and family.
I know this is wrong... I can be a bitch i'll admit that... but during that time I did not care about anyone else's problems. I honestly felt that whatever my friends were going through it's nothing in comparison to what I am going through right now so I didn't want to hear it.
Not only did I not want to hear it but I didn't want to talk about what I was going through either. For me saying out loud that my daughter was really sick was really difficult. It was paralyzing the rare times I did communicate with friends and family because saying it out loud was also me excepting that this is actually my reality.
There were some friends in my life at the time who had issues with my lack of communication. Some felt that I should have kept them posted on what was going on. Others felt that I was wrong for disappearing and not being available to be there for them in their times of need. However, I felt their feelings were bull shit!
I know what you're thinking, and I get it! ....I can be a BITCH!
But you have to understand, people cope with pain differently. I have been told that I was so strong to go through all that I went through and still be standing, but the truth is... the way I handle stress, and grief is by shutting down. I have to SHUT DOWN!
Shutting down is my brains way of protecting my sanity. After my mother died and I saw how alone I really was, I disappeared from my friends. I needed to hide myself while I was weak until I was ready to stand strong again. My long time friends were use to this behavior. They experienced this when my mother died.
Of course they didn't like it!
Of course they wanted to know what was going on with Calista!
But they never pressured me about it. They never tried to make me feel guilty, or like I was a bad friend because I didn't want to talk or be around them. Above all, they never tried to tell me how to respond or how to handle what was going on in MY LIFE.
However, there was some "friends" that did feel a certain way about how I reacted to what was going on with ME. It was as if they were offended that I wasn't telling them the details of Calistas fight so they could go share the information with other people and for that they are not in my life anymore.
You have heard the saying before: It takes a dark hour to know who your true friends are.
Although it was disappointing. I am greatful they are no longer in my life.
In addition to friends being different...I experienced family being different.
During my pregnancy and the discovery of Calista's health problems, my husband and I shared the news with family. When Calista was born they were fully aware of her critical condition, and my husband and I fears and concerns.
Yet, there were some friends, and family (the people we least expected) that were nowhere to be found. There were no phone calls to check in on us, no visitors, no expression of support or concern for our little baby girl, no expression of care at all.
Even when my husband (because I wasn't in a state of mind to do so myself) would reach out to them in search of a listening ear. He would get no answer, and no returned call, and this is FAMILY I am talking about.
For me it didn't really effect me too much until I saw how hurt my husband was about the lack of support we were given when Calista was born.
I love that man so when someone hurts him it's like they are disrespecting me.
I was used to not having support when I needed it most, but this was new for my husband.
I am only sharing this because I know there is someone out there who is struggling to stay afloat mentally, and you are doing it all alone.
Maybe you don't have a spouse, or a friend, or family to encourage you and it HURTS!
Believe me I understand, but if I can tell you anything from my personal experience.
I want to tell you (WITH ALL DO RESPECT FOR MY FAMILY ND FRIENDS)....
YOU DON'T NEED ANYBODY TO SURVIVE!
All you need is your FAITH!
Your faith in GOD (whatever spiritual belief you have)
Your faith in the future (overcoming obstacles and achieving your happiness)
Your faith in yourself ( you are so strong and so powerful in your own right. Nothing and no one can defeat or distroy you...try as they may....It is impossible!)
What I have learned and this is a fact......
that FAITH is worth more than anything this world has to offer, and without faith it is impossible to acheive the unacheivable..... BELIEF is powerful!
Although I am a loser....I lost my mother, two babies, and my dream job, some irrelevant "friends"
I am not done fighting or striving for better, because I BELEIVE
that with or without support I will survive...
better than survive I will win eternal happiness in the end!
What do you see when you look in the mirror? I hope it goes beyond beauty. I hope what you see is that person who's worth it and deserves nothing less than the best, I hope that you see beyond the pain, I hope that you see the glory ahead of you, I hope that you see the strong woman who doesn't break to fail, but breaks to stand the tallest and I hope that you'll always remember that you need to love the person in the mirror first to make a change
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