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my special child

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      i am from Pakistan…have a 4 yr old daughter.she had brain stroke last year & is bedridden….she has spastic body,feeds from gastrostomy tube, constipation, gastro reflux problems……we have limited rather no place to solve our problems….i do not have a domestic help…my routine is very tough . i get up at 4 in mor n go back to sleep around 12 at night….my husband is in a low salaried job…..though he helps me but i get depressed from my routine…..i feel that my efforts are futile….as my child has no responses…..i try to feed her through a bottle n when she gags or does not suck the nipple it hurts me…..i see my daughter getting tremors n physiotheraphy not helping……we do not meet anybody…people make u crazy with silly questions so it is better to be alone….we do go out on daily basis where people looks at us as if we r aliens………my daughter is not a burden rather i love her very much but i feel myself responsible for her misery…i cannot enjoy anything coz i feel my daughter is in trouble…..despite my very efforts i cannot do things to please my own self….i dont need solutions for myself rather i want something for her…
      i also want to earn extra money…though im mba but my life does not permit me to go for a job….i have searched on net for work at home ideas but does not help…..i think im going crazy day by day….at night daily i ask my husband that another day passed n my daughter did not play….share my daughter fotos on her web site


        Dear Sadaf

        I feel for you so much and I understand how very much you love your child and I also understand the guilt you must be feeling.

        You know that your child’s stroke is not your fault but you still feel the guilt because as parents we want our children to grow up and be able to be independent when we are not around to care for them any more.

        It must be very difficult to be isolated because you feel other people just don’t understand.

        The only advice I can give is to try both you and your husband to get a part time job so that one of you is always with your little darling.  Both of you need to get out and meet other people who are not part of the family and just be yourself – not a mother/father or a husband/wife, just yourself.

        I know this might not be possible but it would be wonderful if you could both get out and feel you contribute to the financial side of the household.

        I am thinking of you and I draw much inspiration from your posting.  Bless you all.



            thx lucia for the reply which expressed your deep consideration & it meant a lot to me…i would always keep your mail & read it when ever i will sad….as far as your advice is concerned i regard it but for me it is practically impossible….my husband is in army n they(army) do not have fixed working hours…rather they are 24 hours on call….
          sometimes i cannot face my daughter….she is staring in air n it cuts my heart….if i somehow laugh on something ,,,the second thought that creeps in to my mind is ” how can i laugh when my daughter is in such a pain ful condition”……i know this is not normal but i cannot help it out…..we have decided not to have another baby for some reasons
          1) my daughter was ok before 5 th jan 05……i have seen her playing n crawling n my dreams to have a normal healthy child are n will be fullfilled from her.
          2)i donot want her identity to be lost…..i don not like to hear sympathising words from people…if i have another baby n he/she is normal people would say….thx God u have one normal child atleast……
          3) i do not want happiness in my life …i want her life to be perfect….another baby would not lessen her pain.
              you know we ( me n my hubby) are cousins….we are abondened by our family except my parents….ALL MY aunts n uncles do not meet us n they pass very painful comments to us…..i feel sad that my family( in laws ) not there for us.
          i have lost all my friends….as they are married n living happily n my problems are strange for them….i m not jealous of anybody .i envy them……..aside from my husband i dont have anybody to talk to n my daughter has no playmates …..” she n her lonely bed room”



            I felt so sad reading your posting.  I realise your posting was some time ago and hope things have improved.  If nothing else your posting makes me feel so blessed.  I sometimes forget that my children are special.  I have a son with Autism and a daughter with insulin dependent diabetes.  Currently they are lying on the lounge floor fighting and arguing but at least they can.  Good luck and hang in there.

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