My youngest child has genetic condition that affects their health a lot and everyone I talk to says I need to get over it and focus on the positive or just don't get it.
We live 8 hours away from a major hospital and I go there about every 4-8 weeks for tests, check ups and what not, my child looks to you and me and everyone else normal apart from sleeping a lot, pale and looking like they have a virus.
I have been to counselling to work through what I thought was depression but it was more grieving for the loss of a healthy child now I think, my issue is all my family, husband and siblings and friends just don't want to hear about it I never really talk about it and when I try asking my husband to come to ultrasounds or too specialist appointments which our child is under 8 specialists my husband just says I need to not think too much into it and it will work out we were originally told our child might live until 10 and need a transplant of some major organs before the age of 8.
I just feel so alone we have other children and I find it really hard giving them the attention they need.
I have gotten to the point where I just cant even get the house work done as i'm so tired from being up all night with our youngest crying and being sick, we live near no family which I hate, the worst thing is please don't write horrible things, but I have started to become so jealous of friends and their healthy kids, I have started cutting people off just for complaining about their child having a cold and it was so hard on them... I mean I wouldn't say anything to them I just no longer talk to them.
I just really would like some help on how people remain positive in these kinds of situations all I want to do is go back to work! Because I need a break, we have been told recently our child should not be around other kids cannot attend day care or more than likely in the future can't go to school?
3 Replies
My son has a number of conditions or diagnosis the last one is extremely rare (only 1000 people in the world have it).
You sound quite isolated so you need to find yourself a community that can support you. Check out Facebook for groups that match or are similar to your child's condition. I find them an invaluable support when I'm feeling low.
I go through stages of feeling shitty, isolating and just not wanting to know about little Lucy getting her award at school. I think as my son has aged I've become better at being positive though. I do that by focusing on my son and his awesome qualities and not comparing. It's hard to get there but once it clicked it was easier.
Also contact churches in your local area. Some do things like home help (provide house cleaning or similar) for people in our situations. Also local council might be able to suggest some support services too :)
Also google your states carers association they usually have a wealth of knowledge. And contact Commonwealth Carelink Centres on 1800 052 222 to organise respite care (I've had them come out to watch my son so I could catch a few hours sleep before)
I have a child with special needs and everyone who has a sick, dying or special needs child grieves for the healthy child they dreamed about. Unfortunately if the people around you have not been in a similar situation they will never understand. I too do all the hospital appointments myself, husband works and 95% of the time will not be there with me at these appointments. It was hard to deal with everything yourself but I see it as my full time job now and try and deal with things, our hospital arranged a social worker for me to chat too. It helped and they were there when i needed it most. My advise is that don't talk to the people who won't get it, find a Facebook support group, hopefully someone can recommend one. ask the hospital social worker to put you in contact with other families in your situation and maybe you can share feelings, ideas and resources. It is not easy dealing with the cards life has dealt you, reach out to your GP, get a mental health plan in place, see a councillor. Also if your child cannot attend child care, you can apply for resource/respite/funding for a nanny to come look after her at home.