special needs children

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tamrajd
tamrajd Posts: 86
in Motivation and Support
calling all moms with children with severe disabilities.

I have two beautiful girls 19 years and 6 years with severe genetics disorders, which include blindness ,extreme learnig delays behavior issues, sleep disorders, autisic characteristics to name a few. They have partial agenisis of the corpas collasum.( the center of their brain)
I know you are wondering how in the world did i have two children with the same condition that many years apart. well i divorced after my first daughter and remaried the love of my life we decided to have a child. we were told the condition would never happen again and given the go ahead to have a baby.
Our sweet girl was born and we knew immidiatly, sent for indepth testing and found I was a carrier of a Gene translocation so I had 3/4 chance fo having a c;hild with this condition.
We love our girls dearly but, it is a very hard load to carry at times and to keep positive. I am 45 years old ans there are days i feel 80. that is one of my biggest motivators to loose weight and be healthy because i have to be here forever to care for my precious girls.
Sorry for going on and on, it just happens when i get started.

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  • tamrajd
    tamrajd Posts: 86
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    calling all moms with children with severe disabilities.

    I have two beautiful girls 19 years and 6 years with severe genetics disorders, which include blindness ,extreme learnig delays behavior issues, sleep disorders, autisic characteristics to name a few. They have partial agenisis of the corpas collasum.( the center of their brain)
    I know you are wondering how in the world did i have two children with the same condition that many years apart. well i divorced after my first daughter and remaried the love of my life we decided to have a child. we were told the condition would never happen again and given the go ahead to have a baby.
    Our sweet girl was born and we knew immidiatly, sent for indepth testing and found I was a carrier of a Gene translocation so I had 3/4 chance fo having a c;hild with this condition.
    We love our girls dearly but, it is a very hard load to carry at times and to keep positive. I am 45 years old ans there are days i feel 80. that is one of my biggest motivators to loose weight and be healthy because i have to be here forever to care for my precious girls.
    Sorry for going on and on, it just happens when i get started.
  • runawaybride
    runawaybride Posts: 400 Member
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    Don’t Quit!
    When things go wrong, as they sometimes will,
    When the road you're trudging seems all uphill,
    When the funds are low, and the debts are high,
    And you want to smile, but you have to sigh,
    When care is pressing you down a bit,
    Rest if you must, but don't you quit.

    Life is queer with its twists and turns,
    As every one of us sometimes learns,
    And many a failure turns about,
    when he might have won had he stuck it out;
    Don't give up though the pace seems slow,
    You may succeed with another blow.

    Success is failure turned inside out,
    The silver tint of the clouds of doubt,
    And you never can tell how close you are,
    It may be near when it seems so far;
    So stick to the fight when you're hardest hit,
    It's when things seem worst, that
    You Must Not Quit.

    - C. W. Longenecker

    Only truly wonderful people can do as you are doing ...keep at it ...you are like most moms and put the needs of your children first ...as we should but just make sure you get a little "you" time.:flowerforyou:
  • gabi_ele
    gabi_ele Posts: 460 Member
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    What do you mean sorry for going on and on? We are all here for support and your plate is quite full. If you want to vent you just do it , it's ok. I'm hoping you have a great support system and youre around people that can take some of the load off and you also get some me time. I know that is probably better said then done but on the other hand, you need to be strong and healthy for your girls. I have no clue where you are located , if you were around here I babysit for a couple of hours a week:happy:
    All I can do is put you on my prayer list and ask for a couple of helpers to come your way....:flowerforyou:
  • beep
    beep Posts: 1,242 Member
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    That is heart breaking :brokenheart: . Do you have any support where you are? Someone to come be with the kids so you can have a break?
  • michyrn
    michyrn Posts: 30 Member
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    You are truly an amazing woman! It takes alot to raise children with special needs and I give you props. Keep making sure you get alittle "me" time.
  • tamrajd
    tamrajd Posts: 86
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    you guys are so very sweet, thank you for all the kind words of encouragement.

    I have a lady that gets to come in a few hours a week so I can do errands and such. Wich is a uge blessing. I can take both girls with me but it just takes forever to get in and out of the van. but i do try to take a least one with me to spend some one on one time with momma. the girls truely do have great personalities and are alot of fun when i can step out of the moment and just enjoy them for who they are.
  • sculley
    sculley Posts: 2,012 Member
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    I can't imagine! Its hard enough when we went through all of the evaluations with my son (pdd-nos and severely speech delayed depending on who your talking too) just keep your head up god didn't give us special children thinking we couldn't handle it.


    *hugs*
  • mhsrnmz
    mhsrnmz Posts: 86 Member
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    I have an autistic son and 4 girls, one who is recovered from autism. MFP is a great tool that helps me take care of myself so that I can better take care of others.

    We are all in this together. :flowerforyou:
  • tamrajd
    tamrajd Posts: 86
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    are three of the girls autistic? very happy to meet u
  • maverickyanda
    maverickyanda Posts: 422 Member
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    I thought there was no cure from autism.
    But anyway.

    Sorry to hear about your troubles. Hope you get some support on here and good luck with your weight loss.

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