- Posted April 19, 2012 by
Troy, New York
This iReport is part of an assignment:
Women and the economy
Disabled Child: How does this Mother work
I am the proud mother of beautiful twin boys. These boys were conceived with IVF and born 10 weeks early. My oldest twin John was born with a serious GI birth defect and needed surgery immediately. Both twins spent a considerable amount of time in the NICU. John 101 days and Aaron 40 days. John could not hold anything in his stomach and would vomit the majority of his feedings. It became evident to both my employer and myself that my coming back to my current position as an IT Manager was not going to happen anytime soon. We agreed on a layoff, the company was going through some tough financial times so it worked for both of us. John had another surgery to help stop the vomiting and place a GTube in his belly. He came home 10 days later. When John finally came home it was evident he would need some Early Intervention. We are very fortunate to have a great program in our county and John started to receive Speech and Language for eating and Phsical Therapy for development. When all was said and done between both boys we had 22 therapy sessions a week, 19 in our home, 3 in pool therapy. This whole time my husband and I were struggling financially while knowing there was not a day care provider that would take a child who vomits all the time and all these therapy sessions. So I have stayed home. The boys are four and a half now and have been in special education school since they turned three. This is 5 days a week for 4 hours. Now we were sure I could go back to work at least part time. Nope that is not happening John still vomits every 3 to 4 days for 8 to 12 hours completely dehydrating and alot of times requiring hospital intervention. We do not take vacation, we do not take the kids to amusement parks, we seldom eat out alone or with the children. The upside is I have so much time with my children that I would not have taken if my son did not have special needs. Our main problem is we would not be able to find a day care provider willing to take on John's needs let alone be able to afford one if we found one. Right now my husband makes $32,000 a year and we receive SSI for John. SSI is a constant battle every month we get a letter telling us John is no longer eligible or was never eligible and we owe the government money. Then I go down to my local Social Security office for a couple of hours to try and figure this out. We end up getting the SSI and waiting for another letter the next month threatening to take it away. John gets the Medcaid waiver because of his special needs which helps tremendously because the first year alone was over $3000 in copays. The decision to stay home was not easy and every day of my life I feel guilty that I should be helping our family financially. Then John will be really sick and we will be up all night puking with him being lethargic and listless the next day and I am reminded that there is no way an employer would allow the time off I would need. So we are very creative financially and get alot of help from our mothers, family and friends both financial and supportive. At every milestone I am encouraged that I will be earning a living soon and our family will be able to enjoy the things we envy others having. For now I will stay home and enjoy as much time with my children while they still want to be with me.