Sad Cf Mom

Hey y'all

Im new. I have a daughter with cf, but she also has Down syndrome. She is the light of my life but there are so many challenges that no one can relate to. The mix of Down syndrome and Cf is rare and I used to know another mom with a child like mine. She died last year. She was 10.

I mean it's the little things that are huge things in my world. Like potty training. My daughter is 7 and not yet potty trained. Its not uncommon for kids with Down syndrome to train later. But do you know how unbelievably hard it is to find diapers to contain cf poopies of a 7 year old? Adult diapers are too big. Kid diapers are too small. I double diaper and use vinyl pants (even those are too small), but it still gets very messy. And her poor little hips get rubbed raw by the stupid velcro tabs on pull-ups that are too small.

I cannot have people over, and I cannot take her anywhere with the threat of poops. I cry about it a lot.

Then there is school. She was home schooled last year because she kept getting sick, but she got healthy and she LOVES going to school, so I decided it would be a good thing. But she is still a toddler when it comes to hands in the mouth and putting her mouth on everything from the wall to handrails to toys, pencils, computer mice, screens. Which all make her sick. No matter how much I yell at the school, it does not do a bit of good. She has been so sick this year that her health is visibly declining.

I want to take her back to homeschool, but I am so tired and she needs a lot of supports for therapies etc. I can do it and I will do it if I have too. There is talk of homebound services but she has to be sick. So I have to send her to school, let her get sick each time. We just spent three weeks in the hospital where she was coughing up blood. I just cannot see shortening her life because she can go to school, but people on the outside think differently.

We have no family to speak of, and we live in a rural area. I have cared for her 24-7 and been responsible for all treatments medicine feedings, diaperings, clean up, an ungodly amount of laundry still piles up. I have a house with so many stains from formula, poop, mucus or vomit, that it not fit for visitors. It is clean, but shows signs of cf wear. I also have a 10 year old boy that does not get a lot of time with mommy. More guilt.

I've never had a time with my husband for 7 years that did not include the kids. We love each other, but cannot find a caregiver that can help give us a date night. Several attempts have not gone well and I have given up.

We do not qualify for any government assistance, but the government is putting us in mega financial strain so everyone else can have our spreaded wealth. Got rid of a mortgage to rent, sold one care and severely budget to be able to pay for her care, and the costs have exponentially increased with the added regulation and taxes this year. Not to mention gas prices. I travel 5 hours one way for her clinic every 3 months.

It seems no one cares most days, but I am strong enough to do this. I just have to whine about it every once in a while I guess.

Thanks for listening.

Jules, I'm so sorry your daughter has such difficult challenges in her young life, and that you are having to face this without a large support group. I know only a little about CF, but am very familiar with Down Syndrome as I worked in developmental disabilities for years.

Most states have some services available to children with intellectual challenges; have you investigated these? If not, you should be able to get information from the ARC, which I believe functions in every state. A school social worker also might have information, although school personnel in general aren't always the best resources. My experience has been that there are many good special education teachers, but administrators and other staff are fully concentrated on academics, which DD children aren't usually good at.

I'm thinking in particular of respite care services, which could provide you with at least small amounts of time for you and your son, you and your husband or just for yourself (don't forget, if you don't take care of yourself you can't take care of everyone else.) Most communites have resources for this, and can provide trained people to care for your daughter for short periods of time.

I hope that you'll be able to get some assistance, or to find a support group in your area to help you. You certainly deserve it.

I'm so sorry to hear you're in Texas. I worked in the DD system in Dallas for a number of years, and I totally agree it is pitiful. Their resources are still pointed toward the state school system. I worked on the team that evaluated residents at the Fort Worth and Denton State Schools for community services when FWSS was being prepared for closure, and the quality of services and basis for providing them sickened me.

I wish I could be of more help, but the system in Texas just isn't set up to protect people who can't speak for themselves, and most of the voters don't seem to have a problem with that. I do encourage you to get your daughter on every waiting list that exists, because you can always decline the services if you don't want them when her name comes up.

I wish you strength, and remember, it's okay to give yourself a break from time to time. When the headache from beating your head against the brick wall of the system becomes too bad, stop beating for a while, restore yourself, and go back later. Blessings to you.