Mother of an 8 y/o girl with DDF508 and going through divorce

[Lety]

It has been a while since I posted here, life got very difficult in the last few months, husband left me and my 8 year old daughter who is DDF508, he was caught having a second life, didn't want to work it out and left, now I am left alone without family in the same state and no support system, we finally come to an agreement on parenting time, she will spend 245 days with me and 120 with him, (every other weekend and some days of the week with him). We have another mediation next week to talk about alimony etc, and I need to know more about raising a child with CF and divorce.

I manage to work at an elementary school as an aid, I have to miss work when she gets sick and has doctors appointments, school meetings (she goes to another school closer to where we live), During marriage my income was supplemental, my husband makes 4 times more than what I make, I work 202 days a year, (off during summer). He is fighting hard to give me the least amount he can.

My questions are: for how long a mother of a child with CF can work? Am I going to be able to keep working? I guess it depends of the health of the child but how do we know she will do well?

So far her health has been relatively fair, she has a feeding tube, she is at 9% BMI and is struggling to keep weight, not many exacerbations, had polyps removed when she was 5 years old, goes to school and I keep getting calls that she doesn't feel well so I need to go pick her up. I get pay by the hour and if I am not at work I do not get paid.

I need to have some insight from other single parents or parents in general about working and parenting a child with CF and the financial implications and what would be fair to ask at mediation. (kind of alimony, insurance etc.) Thanks in advance

 

[stephen]

You may want to contact The CF Legal Information Hotline Patient Assistance Resource Center

www.cff.org/AssistanceResources 1-888-315-4154
parc@cff.org

They provide confidential information free of charge to individuals with CF, their family members and their CF care center team.

 

[Gammaw]

Well, several thoughts and considerations come to mind. First, I assume you have an attorney. Mediators are trying to find things the two of you can agree on. But those things aren't necessarily what's best for you or your daughter. So I would listen to your lawyer and don't sign on the bottom line until you check it out with the lawyers.
Secondly, you talk about alimony so it seems you have the option of having your husband supplement your income, in addition to child support. It sounds as though your income was just extra money since you sound like the one that always takes off work when your daughter is sick....or goes to the doc? And when she's in the hospital? And you will continue to be I suspect unless he's agreeing now to take off work when this happens now? You may not want the new woman in his life doing that for him. What happens when she's sick on his days with her? Or when she's in the hospital? It just sounds like your full time job is caretaker for a medically disabled child - which is what CF kids generally are. So unless he's willing to hire a nurse to care for you daughter while you go to school or work on increasing your work income, he needs to be paying you enough to forego that and keep yourself available and attentive to your daughter. CF is one of the most intensive and time consuming illnesses for a family to manage. He can't divorce himself from that.
Third, CF children are, frankly, more expensive to raise than the average tot! Worth every penny, but more expensive nonetheless. So I would figure in the increased cost of food (which the IRS recognizes as a MEDICAL DEDUCTION for CFers. You will find some threads here helping you calculate that). Obviously there is almost always increased medical expenses, and things that are additionally needed but not covered by insurance - like vitamins, sterilizing bags, vinegar for nebi soup, saline, mileage to docs, etc. So child support calculated in the usual way is probably unfairly low. Disabled kids cost more to maintain. Consider applying for SSI too if you didn't qualify before. It's based on the same idea - defraying some of the extra cost.
Lastly, I would want to know that you can change all the numbers that you agree to now as circumstances change. Your ability to work, the level of care your daughter needs, etc. can look very different in 3 years or 5. So the numbers should look different then too! And with all the drugs and research in the pipeline, they may even look much better then, rather than worse!
Be sure you have an attorney. You need one to help protect your daughters future.

 

[jayotto]

My daughter is 15 w/CF, and I also have a 17 year old daughter w/o CF. I have been a single parent since my kids were 4 and 2, and it is the hardest job ever. When I was first divorced, I had no family out here to help, so it became a juggling game to find a place for my oldest to stay when the youngest was in the hospital. I also have not been receiving any child support (he is now over $63,000 in arrears), nor have the girls heard from their father in over 5 years.

I have been very lucky with the companies I worked for when she has been hospitalized. When she was younger, I was at the hospital 24/7. It becomes much easier when they get older. I cramp her style if I am up at the hospital too much, plus, as a teenager, she likes to sleep until 11, 12 or even 1, so now what I do is come in to work super early, leave around lunchtime to head to the hospital, and then come home at night. Nighttime is when she is able to hang out with her other CF friends, not in each other's rooms, and with masks on.

If your ex has the health insurance for your daughter, it might make more sense to try and find a company that will work with you when she is hospitalized, has doctor appointments, etc. I work for an Engineering Company.

You will do just fine. It is hard, but it seems like you have your ex's support as well as his continued involvement with your daughter.