It's been 2 years...to the date. I'm still bitter but a little less than last year. I imagine it will continue to be less and less each year.
I used to own a business, have a job, be an executive in a big fat million dollar company. I used to own a million dollar house, have a house keeper, shop to my hearts content...I use to have a huge retirement account and two fancy cars, two yachts, medical insurance for my family, money to vacation wherever we wanted.
I use to have a business partner, who was also my father.
I now have none of those things...including the father. He went on a tirade. Really I can't recall the details anymore. It was so shocking, so emotional. Because he was my father, I acted like...well...a spoiled fit throwing daughter instead of like an intelligent vice president. I didn't handle it "professionally". I tried and failed. Would you handle it professionally if your father changed the locks on the business (including the yachts) and decided that you had no place there anymore...If he decided that 90 hours a week of work was not good enough...If he cancelled your children's (yes, including Hailey's) medical insurance...You had to do more, be more in order to be a part of the business.
So now I have none of those fancy things. I do not own a million dollar home, I do not own a fancy car...I do not shop, I do not eat out, I do not vacation. I do not have a retirement account...I don't have more than a hundred bucks in the bank right now.
But what I gained is huge. So what I do have is a home that I love, close to my family...I do have self respect and the time to drive and pick up my children from school, I have time to cook, time for friends, I have a life beyond work. I have a renewed sense of who to trust and who to turn away from. I have strength and the knowledge that my husband and I will overcome any obstacle that is put in front of us...I'm a survivor and I gained pride in that.
So I'm bitter yes because he stole my choice but beginning to be thankful that I was shoved into the life and role that I have always wanted to be in.
Thursday, September 30, 2010
Wednesday, September 29, 2010
Day 1 Prep for IEP
On this, the first day of preparation for Hailey's IEP...I have hit a road block. The IEP has been cancelled, the speech assessments haven't been completed (supposed to be done by tomorrow) and I am tired. I have been researching online and talking with other parents and advocates all day...I am going in circles. I have left messages and sent emails...Nothing. I have gotten nowhere...no progress at all. Now I just looked down and it is 2:00. Minus the hour that I took Aubrey to the library program, I have been working on this since 8:30 am...five and a half hours....and nothing but a bunch of print outs of laws and articles that I have read a million times.
And so I wonder, how do they expect parents to do this...Run in circles, hope for a lucky break, a great program manager...but most of the time, we do the research and forge the battle to prevail for a year and then at the next IEP...slam they do it again and you start all over again....like the saying goes, you may have won the battle, but you haven't won the war...
I was counting them as I was getting everything in order this morning and we have had 12 IEP meetings in the last 6 years and 9 IFSP meetings...all that we have had to prepare for, get ready for, research, fight...There has got to be an easier way. It takes me about 16 hours on average to prepare for an IEP meeting...It takes me about 40 to 50 hours in addition to that if we don't agree on something and I have to go to serious advocate mode...
My kitchen table is covered in papers, research, files and notes...My desk is covered in sticky notes, phone numbers, notes from calls, paperclips...etc etc etc...Hailey gets off the bus in an hour which means I need to button it all up so that she doesn't walk into a "mess" which sends her into a downward spiral...And Aubrey has basically been ignored all day (Oh she's been fed, playing and coloring next to me...but I haven't really heard anything that she's said and that is sad).
I think that I will button it up an hour early and sit outside with Aubrey...maybe some chalk or cuddling or reading before Hailey gets home...Then it will be back at it again when the girls go to bed...Yawn...I'm already tired.
And so I wonder, how do they expect parents to do this...Run in circles, hope for a lucky break, a great program manager...but most of the time, we do the research and forge the battle to prevail for a year and then at the next IEP...slam they do it again and you start all over again....like the saying goes, you may have won the battle, but you haven't won the war...
I was counting them as I was getting everything in order this morning and we have had 12 IEP meetings in the last 6 years and 9 IFSP meetings...all that we have had to prepare for, get ready for, research, fight...There has got to be an easier way. It takes me about 16 hours on average to prepare for an IEP meeting...It takes me about 40 to 50 hours in addition to that if we don't agree on something and I have to go to serious advocate mode...
My kitchen table is covered in papers, research, files and notes...My desk is covered in sticky notes, phone numbers, notes from calls, paperclips...etc etc etc...Hailey gets off the bus in an hour which means I need to button it all up so that she doesn't walk into a "mess" which sends her into a downward spiral...And Aubrey has basically been ignored all day (Oh she's been fed, playing and coloring next to me...but I haven't really heard anything that she's said and that is sad).
I think that I will button it up an hour early and sit outside with Aubrey...maybe some chalk or cuddling or reading before Hailey gets home...Then it will be back at it again when the girls go to bed...Yawn...I'm already tired.
Tuesday, September 28, 2010
A Great Life
I have a great life. I complain and bitch and whine about the negatives a little too often...So here are my positives...
2. I have a wonderful husband who works his rear end off every day so that I can stay at home and take care of my three beautiful children...who he loves with all of his heart.
3. I have food in the cupboard and refrigerator...OK so I keep the grocery bill down to $100 a week but I am good at budgeting and shopping cheap so we have healthy food in the cupboard and refrigerator!
1. I have three medically healthy children. Although Hailey has a genetic disorder and a multitude of other challenges, she is medically healthy most of the time...
3. I have food in the cupboard and refrigerator...OK so I keep the grocery bill down to $100 a week but I am good at budgeting and shopping cheap so we have healthy food in the cupboard and refrigerator!
4. I have wonderful friends...They are few but precious and love me all the time, no matter if I am bitching and whining or on cloud nine.
Does there need to be anything else? I am happy with my great life and today I am reminding myself just how wonderful that life is!!
Although having a child with a rare genetic disorder is inexplicably complicated and difficult, it is also beautiful. I would not know half of my friends if it wasn't for the challenges that I have been through...I don't think that people who live the fairy tale can possibly live as rich and rewarding a life as I have...
Don't worry...I have Hailey's IEP next week & will be preparing beginning tomorrow...I am sure that I will be back to my complaining self by then!!
Thursday, September 23, 2010
A little anger to get you going...
When we moved to Sacramento County from Marin County, Hailey had to be "reevaluated" for all of her services. Most of them went smoothly...One did not. After the social worker did her reevaluation and presented her report, Hailey's services were cut almost in half...This is after a one hour assessment by someone we have never met before...a stranger. I am still not sure how she evaluated her at all since Hailey sat on my lap through the entire meeting...
During the initial phone call to the social worker I was asking all of the right questions in order to see how she came to her conclusions in the report...One was that Hailey had independent and safe movement...I asked the social worker if she met my child, if she maybe had Hailey mixed up with one of her other cases. You see, Hailey can walk and she can run and she is fast. She can go up and down the stairs holding the rail...but she is DANGEROUS to herself. She has no idea that she could fall and if someone is not next to her, she would trip and fall hundreds of times a day.
So the social worker says to me...WAIT FOR IT..."look my friend, would you rather that she was immobile, in a wheelchair or bed because that is how some of my cases are" And I was enraged... I think I actually lost my mind at that moment because that is the most unprofessional question that I have ever been asked by all of the hundreds of therapist, social and case workers I have met over the last 9 years. All I could think is, you don't know me or how my life is or what I wish for or what I do every day to keep all of the balls in the air. Don't ask me what I wish for or what I would rather because first it is none of your business and second it doesn't really matter what I would rather because this is what IS...
In retrospect, I think that I was so angry for a variety of reasons...
One I hate focusing on all of the negative aspects of Hailey's disorder. I choose to see her beautiful smile and hear her infectious laugh. I choose to marvel in how she walks at all, how she writes her own H, how she uses the potty most of the time, how independent she is becoming in her own little world...I try hard every day not to see that she is 9 and can't write her whole name, how she can only really approximate about 6 words, how she falls all the time if someone is not right next to her, how she still wears a diaper at night. During these reevaluations and assesments and IEP meetings and IPP meetings, the focus is on what she CAN'T do not what she CAN do. So after going through about 6 of the meetings right after losing my home and business and relocating 100 miles away...I had reached my limit for tolerating other people's ignorance, questions, judgement.
Two I hate when people ask me ridiculous questions. They infuriate me. Sometimes do I wish she was in a wheelchair and immobile?...another loaded questions but...yes, sometimes...That way I wouldn't have to worry about her falling and hitting her head and going to the hospital for stitches if I let her out of my sight or even further than arms length away...I wouldn't have to worry about her chasing her sister and attacking her and hitting her and pulling her hair...Does that make me a terrible person, mother...maybe but I think that most of the time it just makes me human...I don't really wish she was in a wheelchair, only in little blinks...In the backs of our minds, I think we have all kinds of little blinking thoughts that aren't truly wishes but rather contemplations.
So I wrote a complaint letter about the behavior and unprofessional comments from the social worker and I filed a fair hearing and we won. I am not sure if I needed to be so upset and enraged to win...and I'll never know. What I do know is that one comment from a horrible social worker gave me enough energy and enough drive to research every day, consult attorney after attorney, file a fair hearing, prove that my daughter required 24 hour supervision...and win...until the next reevaluation or assessment or IEP or IPP....and the next time my daughter needs someone to advocate for her...
During the initial phone call to the social worker I was asking all of the right questions in order to see how she came to her conclusions in the report...One was that Hailey had independent and safe movement...I asked the social worker if she met my child, if she maybe had Hailey mixed up with one of her other cases. You see, Hailey can walk and she can run and she is fast. She can go up and down the stairs holding the rail...but she is DANGEROUS to herself. She has no idea that she could fall and if someone is not next to her, she would trip and fall hundreds of times a day.
So the social worker says to me...WAIT FOR IT..."look my friend, would you rather that she was immobile, in a wheelchair or bed because that is how some of my cases are" And I was enraged... I think I actually lost my mind at that moment because that is the most unprofessional question that I have ever been asked by all of the hundreds of therapist, social and case workers I have met over the last 9 years. All I could think is, you don't know me or how my life is or what I wish for or what I do every day to keep all of the balls in the air. Don't ask me what I wish for or what I would rather because first it is none of your business and second it doesn't really matter what I would rather because this is what IS...
In retrospect, I think that I was so angry for a variety of reasons...
One I hate focusing on all of the negative aspects of Hailey's disorder. I choose to see her beautiful smile and hear her infectious laugh. I choose to marvel in how she walks at all, how she writes her own H, how she uses the potty most of the time, how independent she is becoming in her own little world...I try hard every day not to see that she is 9 and can't write her whole name, how she can only really approximate about 6 words, how she falls all the time if someone is not right next to her, how she still wears a diaper at night. During these reevaluations and assesments and IEP meetings and IPP meetings, the focus is on what she CAN'T do not what she CAN do. So after going through about 6 of the meetings right after losing my home and business and relocating 100 miles away...I had reached my limit for tolerating other people's ignorance, questions, judgement.
Two I hate when people ask me ridiculous questions. They infuriate me. Sometimes do I wish she was in a wheelchair and immobile?...another loaded questions but...yes, sometimes...That way I wouldn't have to worry about her falling and hitting her head and going to the hospital for stitches if I let her out of my sight or even further than arms length away...I wouldn't have to worry about her chasing her sister and attacking her and hitting her and pulling her hair...Does that make me a terrible person, mother...maybe but I think that most of the time it just makes me human...I don't really wish she was in a wheelchair, only in little blinks...In the backs of our minds, I think we have all kinds of little blinking thoughts that aren't truly wishes but rather contemplations.
So I wrote a complaint letter about the behavior and unprofessional comments from the social worker and I filed a fair hearing and we won. I am not sure if I needed to be so upset and enraged to win...and I'll never know. What I do know is that one comment from a horrible social worker gave me enough energy and enough drive to research every day, consult attorney after attorney, file a fair hearing, prove that my daughter required 24 hour supervision...and win...until the next reevaluation or assessment or IEP or IPP....and the next time my daughter needs someone to advocate for her...
Tuesday, September 21, 2010
A Private Language
While driving my little lady to school today, her little sister says, "I speak word English, Hailey speaks sign English".
So I say, "yes, that's right"
and she continues..."That is why she has to hit me and pull my hair and bite me sometimes because she doesn't know word English, right Mommy?"
And I say, "Well, no matter what she shouldn't hit or bite you or pull your hair."
So Aubrey says, "Well that's why she does it you know...If she knew how to speak word English then she wouldn't have to hit me, pull my hair or bite me in the car because then she could talk to you without me screaming for her"
WOW...my 3 year old just figured out what it took me 2 behaviorists to figure out. The car is a challenging place for Hailey because she communicates using sign. I can't watch her hands and signs in the back seat while I am driving so she has to get my attention...So she attacks her sister so her sister will scream and then I will look back. I think growing up with a sister with cri du chat has made Aubrey wise beyond her years...
So I say, "Well honey, maybe we should have Hailey start riding in the front seat" (Hailey is almost 60 pounds and is already tall enough to sit in the passenger seat)...And Hailey CLAPS and CLAPS and laughs and laughs....
Then Aubrey claps and laughs and says, "See sissy, I told you I'd tell her"...
I think that they have a private language that I'm not privileged to know and that makes me Clap and Laugh!
Friday, September 17, 2010
A Fashionista Melt Down!
So here's the deal...I should have just let her wear the stupid dirty sweater to school. Then we never would have had to start our lovely Friday with madness and craziness and huge tears...But that's the thing...It is easy to look back and say 'I should have'...I'll just have to remember this lesson for next time, or maybe I'll just be more careful about what gets hung up and what goes in the hamper! I just have to hope that by bribing her, it doesn't encourage her to repeat the episode again so that she can wear my clothes...Silly Fashionista!
Wednesday, September 15, 2010
The Magic Pill
I think about it often...this elusive magic pill that I've heard about. The question we've all asked ourselves and feel pretty passionate about...'If someone handed me a magic pill to "fix" her, would you give it to her?'.
It's a trick question. Nothing you say when it comes up is right, the looks you get from the questioner no matter how carefully you answer will freeze you in your place. It is a horrible question.
I first heard it when Hailey was just a few months old and we travelled to the annual 5 p minus conference. We were excited to meet other families who were experiencing what we were...Families who lived in a world that we now lived in. We sat in a great big conference room with our baby girl in the stroller and listened to the speaker...and he said, 'If someone gave me a magic pill to correct this disorder, I wouldn't give it to my child.' He went on to say that the child was who they were because of the disorder, to "fix" it would be to take away who they really were....
Seriously??? You have to be kidding me, I thought. If someone handed me a magic pill to take this life that we didn't choose away...to take her pain away...to "fix" her...I would give it to Hailey without a thought or a question.
Now it has been over 9 years since the question was first brought up and I think a little differently. I would take pause and see that fixing that broken chromosome would take away some of who she is. It would change the way she looked, the way she thought, the way she laughed, the way she walked...It would take away the experiences that we have had, the people we have met, the road that we have travelled. If I never heard the word cri du chat, five p minus, cat cry syndrome...It would change me.
So the question...Would I give her the magic pill??? YES...I would. I would give anything to hear her voice and to hear everything that she has stored in her head over the last 9 years. I would give anything to see her run through the playground, meet friends, go to birthday parties. I would give anything...
It's not possible though, there is no magic pill...So I'm thinking that it would really help if people stopped asking me the question. It's a hard one to answer and an even harder one to have to think about.
It's a trick question. Nothing you say when it comes up is right, the looks you get from the questioner no matter how carefully you answer will freeze you in your place. It is a horrible question.
I first heard it when Hailey was just a few months old and we travelled to the annual 5 p minus conference. We were excited to meet other families who were experiencing what we were...Families who lived in a world that we now lived in. We sat in a great big conference room with our baby girl in the stroller and listened to the speaker...and he said, 'If someone gave me a magic pill to correct this disorder, I wouldn't give it to my child.' He went on to say that the child was who they were because of the disorder, to "fix" it would be to take away who they really were....
Seriously??? You have to be kidding me, I thought. If someone handed me a magic pill to take this life that we didn't choose away...to take her pain away...to "fix" her...I would give it to Hailey without a thought or a question.
Now it has been over 9 years since the question was first brought up and I think a little differently. I would take pause and see that fixing that broken chromosome would take away some of who she is. It would change the way she looked, the way she thought, the way she laughed, the way she walked...It would take away the experiences that we have had, the people we have met, the road that we have travelled. If I never heard the word cri du chat, five p minus, cat cry syndrome...It would change me.
So the question...Would I give her the magic pill??? YES...I would. I would give anything to hear her voice and to hear everything that she has stored in her head over the last 9 years. I would give anything to see her run through the playground, meet friends, go to birthday parties. I would give anything...
It's not possible though, there is no magic pill...So I'm thinking that it would really help if people stopped asking me the question. It's a hard one to answer and an even harder one to have to think about.
Tuesday, September 14, 2010
I'm doing something right
There are nights like last night that I feel like I am doing everything wrong. Hailey has a new friend at school who has some pretty major behavioral problems...in typical Hailey fashion, she has been picking them up and trying them on at home...What will happen if I pull my sister's hair so hard that she screams? What will mom do if I pinch my sister's arm and draw blood? What will happen if I throw my hearing aides at mom while she's trying to cook dinner? I'm just hoping that I can wait them out and not give her much attention for them...that way, they won't last long and become a problem.
Well last night was one of those nights where I was watching the clock, waiting for 8:30 so I could put the girls to bed...I even thought of skipping their night time stories and just sending them to bed early. I was literally coming apart at the seams and just barely holding on to my patience. So I thought, I'm just doing this all wrong...My girls fight all of the time, I can't even listen to my 14 year old son for one second before the two of them are screaming at the top of their lungs...
Then this morning, I go to walk out to my car and find this note taped to the door for me...From my 14 year old son...Be prepared, you might cry...I know I did...
I just wanted to let you know how great my family is. You always help me when I need help and you always provide me with the things I need. It takes an outstanding mom to take care of a 14 year old kid, a 3 year old girl and a disabled 9 year old. We have all been through a lot, moves, divorces, crazy grandpas, ha ha and a financial disaster. Even when we are in a hole, you always find a way to provide for us. Tim and I have created a great relationship and I am glad he is my step dad. My sisters are awesome, sometimes they are a hassle but I will always love them. I love you so much along with the rest of the family. Sometimes I feel that I am unfair to my sisters, sometimes I am super snappy towards them and a lot of the time I pick sides. I know you have been stressed out a bit because we never really know when Tim will be home, and on top of that the girls are little monsters sometimes. I appreciate you so much mom, I love you!!!!!!!!!!!!!!!!!!!!!! Love, UR BOY
So apparently, I am doing something right...I am raising a loving respectful intelligent young man who I am so proud of. I am raising a son who protects and loves his family and has the sensitivity to write a note like that to his mama...So to my boy...I LOVE YOU RIGHT BACK!! You are definitely the BEST teenage boy that a mother could ever ask for.
Well last night was one of those nights where I was watching the clock, waiting for 8:30 so I could put the girls to bed...I even thought of skipping their night time stories and just sending them to bed early. I was literally coming apart at the seams and just barely holding on to my patience. So I thought, I'm just doing this all wrong...My girls fight all of the time, I can't even listen to my 14 year old son for one second before the two of them are screaming at the top of their lungs...
Then this morning, I go to walk out to my car and find this note taped to the door for me...From my 14 year old son...Be prepared, you might cry...I know I did...
READ THIS TO THE FAMILY BEFORE THE GIRLS GO TO SCHOOL
I LOVE YOU ALL
I just wanted to let you know how great my family is. You always help me when I need help and you always provide me with the things I need. It takes an outstanding mom to take care of a 14 year old kid, a 3 year old girl and a disabled 9 year old. We have all been through a lot, moves, divorces, crazy grandpas, ha ha and a financial disaster. Even when we are in a hole, you always find a way to provide for us. Tim and I have created a great relationship and I am glad he is my step dad. My sisters are awesome, sometimes they are a hassle but I will always love them. I love you so much along with the rest of the family. Sometimes I feel that I am unfair to my sisters, sometimes I am super snappy towards them and a lot of the time I pick sides. I know you have been stressed out a bit because we never really know when Tim will be home, and on top of that the girls are little monsters sometimes. I appreciate you so much mom, I love you!!!!!!!!!!!!!!!!!!!!!! Love, UR BOY
 |
| The best big brother and son EVER! |
So apparently, I am doing something right...I am raising a loving respectful intelligent young man who I am so proud of. I am raising a son who protects and loves his family and has the sensitivity to write a note like that to his mama...So to my boy...I LOVE YOU RIGHT BACK!! You are definitely the BEST teenage boy that a mother could ever ask for.
Saturday, September 11, 2010
It was just a cookie...with some Rainbow Tears
From November 2007...
Rainbow Tears...That is what my emotions feel like today. An array of colors, tones and hues. A mixture of sadness and joy.
My little one ate a cookie last night. I know, doesn't seem significant does it...Well it is. She is 8 months old and like any other normal child she tried, held and succeeded in eating her own cookie. It was a mess but sheer and utter bliss for her. She was happy and pleased with herself and we were all happy and pleased for her. We clapped and ooed and awed.
And here come the rainbows. My other little lady, who is 6 sat in her booster seat at the dinner table struggling to eat her burrito, cheese and beans herself. STRUGGLED...while we all ooed and awed at the babies success...I was happy for the baby and sad for my 6 year old.
Sad that everyday she tries so hard but that she didn't even begin to eat anything by herself until age 3. Cookies, fishy crackers all just a different world away for her. I am sad that no matter how hard she tries she will never simply do things so easily as the baby does.
But happy all in another minute that she can even struggle to eat her food. Happy that she can walk and laugh and play and giggle and put her own boots on at times. Happy that she can use the potty by herself sometimes, that she can sometimes get into the carseat all by herself, put on her jacket all by herself and RUN RUN all by herself. Pink parts of my rainbow where I get to rejoice in the things that she can do, that she tries to do and the successes that she has.
The baby is pulling to stand now. She just decided one day that she wanted something on the coffee table and she just stood up. She made it so easy. It took my other lady 3 years to do that...3 years of physical and occupational therapy to simply stand up with support. And even then it was akward and sad and happy all at one time. So those tears are black...and frustrated and angry. but happy and pink and yellow that she did it at all.
This is how I am destined to cry forever...Happy tears for everything that she can do and that the baby can do and that my son can do and Sad tears for what she will never do, that the baby and my son will do with ease.
Tears of rainbows, mixtures of sadness and hapiness.
Rainbow Tears...That is what my emotions feel like today. An array of colors, tones and hues. A mixture of sadness and joy.
My little one ate a cookie last night. I know, doesn't seem significant does it...Well it is. She is 8 months old and like any other normal child she tried, held and succeeded in eating her own cookie. It was a mess but sheer and utter bliss for her. She was happy and pleased with herself and we were all happy and pleased for her. We clapped and ooed and awed.
And here come the rainbows. My other little lady, who is 6 sat in her booster seat at the dinner table struggling to eat her burrito, cheese and beans herself. STRUGGLED...while we all ooed and awed at the babies success...I was happy for the baby and sad for my 6 year old.
Sad that everyday she tries so hard but that she didn't even begin to eat anything by herself until age 3. Cookies, fishy crackers all just a different world away for her. I am sad that no matter how hard she tries she will never simply do things so easily as the baby does.
But happy all in another minute that she can even struggle to eat her food. Happy that she can walk and laugh and play and giggle and put her own boots on at times. Happy that she can use the potty by herself sometimes, that she can sometimes get into the carseat all by herself, put on her jacket all by herself and RUN RUN all by herself. Pink parts of my rainbow where I get to rejoice in the things that she can do, that she tries to do and the successes that she has.
The baby is pulling to stand now. She just decided one day that she wanted something on the coffee table and she just stood up. She made it so easy. It took my other lady 3 years to do that...3 years of physical and occupational therapy to simply stand up with support. And even then it was akward and sad and happy all at one time. So those tears are black...and frustrated and angry. but happy and pink and yellow that she did it at all.
This is how I am destined to cry forever...Happy tears for everything that she can do and that the baby can do and that my son can do and Sad tears for what she will never do, that the baby and my son will do with ease.
Tears of rainbows, mixtures of sadness and hapiness.
Friday, September 10, 2010
The first of what I hope to be many
I've been thinking about doing this for a long time...starting a blog. I have journals that are busting at the seams and sitting unread. I picked up a magazine last month and saw an award for a blog written by another special needs mother. It has been so wonderful to follow her blog and see what she experiences...in another state, so far away, surrounded by different people of different backgrounds and yet we have the same feelings...many of the same experiences. This isn't the first blog about a child with a disability, a genetic disorder, or cri du chat but I hope that it will help people to understand what it is like for a family, for the child, for the mother of a child with cri du chat.
The reasons why I didn't start before are many...I had a full time job while balancing the care of my children and running a household...I didn't want other people to see my weaknesses, my pain and misunderstand it or mistake it for me not loving my daughter completely...I didn't want to admit that I needed support in this new world (not so new now, it's been 9 years!)...my family raised me to think that privacy was the best policy. Forget all of that now...I'm taking the plunge.
She was born 9, almost 10 years ago to a happy and excited Mommy and Daddy and a proud big brother...She came into the world small, not breathing, with a little tiny head and moles all over her ears. Mommy and Daddy didn't really understand the words coming out of the doctor's and nurses mouths...microcephaly...What in the world is that??? they said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on. The next few days are a blur of feelings and crying and worrying and measuring other people's heads. You see the geneticist informed Mommy and Daddy that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about....he would see them all in 3 months to see how she did...So they walked around for 3 months, measuring every family member's head...charted them and brought it in to the geneticists office at that 3 month appointment. The appointment went well. The little girl was growing steadily, if not quickly, she was developing, if not quite to the normal standards...etc etc etc...Mommy and Daddy and big brother packed up their things from the geneticist office, with the little girl given a clean bill of health and started out the door...But stopped when the doctor asked "HOW DOES SHE CRY?"...Mommy turned and said, "like a kitten...everyone says so"..."SIT BACK DOWN PLEASE" says the doctor and began explaining about a "disorder" where the babies "cry like kittens"...You are kidding me thought Mommy but couldn't make anything come out of her mouth....Besides sobs...and there it is, the little girl was tested and found to have Cri du Chat Syndrome...
As I sit here now and think about it, 9 years later, I still sob thinking back to that moment...the moment that my life changed, that my family's life change, that my son's life changed, that my marriage changed, that I changed. I had to become smarter in order to navigate the strange new world and learn this new language, I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else. I had to protect myself, my daughter and my son...It all came down to change.
The reasons why I didn't start before are many...I had a full time job while balancing the care of my children and running a household...I didn't want other people to see my weaknesses, my pain and misunderstand it or mistake it for me not loving my daughter completely...I didn't want to admit that I needed support in this new world (not so new now, it's been 9 years!)...my family raised me to think that privacy was the best policy. Forget all of that now...I'm taking the plunge.
She was born 9, almost 10 years ago to a happy and excited Mommy and Daddy and a proud big brother...She came into the world small, not breathing, with a little tiny head and moles all over her ears. Mommy and Daddy didn't really understand the words coming out of the doctor's and nurses mouths...microcephaly...What in the world is that??? they said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on. The next few days are a blur of feelings and crying and worrying and measuring other people's heads. You see the geneticist informed Mommy and Daddy that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about....he would see them all in 3 months to see how she did...So they walked around for 3 months, measuring every family member's head...charted them and brought it in to the geneticists office at that 3 month appointment. The appointment went well. The little girl was growing steadily, if not quickly, she was developing, if not quite to the normal standards...etc etc etc...Mommy and Daddy and big brother packed up their things from the geneticist office, with the little girl given a clean bill of health and started out the door...But stopped when the doctor asked "HOW DOES SHE CRY?"...Mommy turned and said, "like a kitten...everyone says so"..."SIT BACK DOWN PLEASE" says the doctor and began explaining about a "disorder" where the babies "cry like kittens"...You are kidding me thought Mommy but couldn't make anything come out of her mouth....Besides sobs...and there it is, the little girl was tested and found to have Cri du Chat Syndrome...
As I sit here now and think about it, 9 years later, I still sob thinking back to that moment...the moment that my life changed, that my family's life change, that my son's life changed, that my marriage changed, that I changed. I had to become smarter in order to navigate the strange new world and learn this new language, I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else. I had to protect myself, my daughter and my son...It all came down to change.
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