Teaching3bears Posted April 7, 2019 Share Posted April 7, 2019 I'm so tired of dealing with my children's medical problems. I want them to be healthy. I worked so hard to have a healthy pregnancy, eating healthy, walking daily, etc. I even took the stairs four flights up at work so as not to be in an elevator with someone who had just had a cigarette. I kept my babies healthy and did not give them junk food. Then my oldest got sick and we strictly did all the recommended special diets and tried a thousand supplements and treatments. My two oldest have severe special needs and they look so unhealthy. I am so tired. It is neverending. I followed a nurses' advice this morning against my instincts because I was scared and my son had a very bad reaction. Am so sick of this. I feel so bad for him. poor baby. My children TRY SO HARD. It is so obvious to everyone what good people they are. I want a better life for them. I want them to have health and strength. They deserve it. I am feeling so scared and lonely right now. And so sad. 1 29 Quote Link to comment Share on other sites More sharing options...
Selkie Posted April 7, 2019 Share Posted April 7, 2019 I'm so sorry. I wish there was more I could do than just offer hugs. 🙁 5 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted April 7, 2019 Share Posted April 7, 2019 No health problems, but I'm feeling that way about my ds' autism at the moment. I have some funky sensitivities and can't be too close to radio towers, cell towers, that kind of thing. So every time I find a church that might work for him, that's quiet enough for me, where is it? Right close to some kind of tower. I kid you not. So I finally have an aide for him, only 3 weeks till she leaves for summer, and here I can't figure out where to take him. He won't go back to our old church, even with an aide. Are you able to do some kind of supported vacation and get a break? Or do they get county funding you can use for respite care? I can hire workers through care.com using our various funding sources. You may need a break. Even if you're at home, having a respite worker can let you go shower, take a breath, work on a project you've been wanting to hit, whatever. I don't necessarily leave when my workers are here, but it lets me take a breath. 3 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted April 7, 2019 Share Posted April 7, 2019 8 minutes ago, Teaching3bears said: I followed a nurses' advice this morning against my instincts because I was scared and my son had a very bad reaction. I'm so sorry about this. It must have been very scary!! And I have that too with my ds, where professionals give advice and sometimes you have to disregard them and say no, I know what he needs. But on medical stuff that's so hard. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted April 7, 2019 Share Posted April 7, 2019 hugs. 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted April 7, 2019 Author Share Posted April 7, 2019 I am not sick of my kids but I am sick of their medical problems. I have been looking for a respite worker for four years. Where I live you hire your own and they refund what you pay them. To simplify things, I have met 2 types of respite workers: 1. twenty-something. Enthusiastic. Full schedule with a few open spots to fit me in. Either they fill those spots with younger kids or kids who live closer to them or they get sick (something long-term). or they get a full-time job. In any case, it doesn't happen. 2. Older. Poor and desperate, very desperate for money to pay rent and feed their family. Often they have mild mental illness or health problems or something that makes me feel that they would require me to care for them more than they would help. They are often slow-moving and my hyperactive son requires someone who can move fast. When I interview them they only say hello to my neurotypical son and they don't smile much. I am sorry if this doesn't sound nice to say but the truth is actually worse. These people need help and employment but it would be a burden for our family to have them around. Most of the respite workers do not have cars and it takes most of them an hour to get to my house by bus. This is a problem. Right at this moment I do not want a respite worker. I want my son to sleep. Respite workers make noise. DH is home but I am not taking a shower because the sound of the water will wake up my son. what I really want is for them to be truly healthy. 2 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted April 7, 2019 Author Share Posted April 7, 2019 I love my children. I hate their health problems. They hate their health problems. I hate that they have debilitating sensory problems. They hate their debilitating sensory problems. They used to talk. I miss them talking. They miss talking . I miss going out and sharing the world with them. They love going out but it's happening less and less because the health problems keep them up at night and asleep during the day. 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted April 7, 2019 Author Share Posted April 7, 2019 Sorry if I come across as complaining and not accepting . Most days I trudge through. I'm just feeling awful right now and feel so bad for my kids. I feel like I'm pushing a boulder up a mountain and it keeps falling down on my kids. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted April 7, 2019 Share Posted April 7, 2019 Hugs 1 Quote Link to comment Share on other sites More sharing options...
katilac Posted April 7, 2019 Share Posted April 7, 2019 26 minutes ago, Teaching3bears said: Sorry if I come across as complaining and not accepting . Don't worry about it, many of us post/complain about less important things on the regular! Sometimes you just get tired. I'm sorry you're having a rough time. I'm sorry your kids got a rough break. 4 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted April 7, 2019 Author Share Posted April 7, 2019 After two hours I took a quick shower but I managed to wake him up. I hope he is ok. Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted April 7, 2019 Share Posted April 7, 2019 ((hugs)) 1 Quote Link to comment Share on other sites More sharing options...
Kanin Posted April 7, 2019 Share Posted April 7, 2019 3 hours ago, Teaching3bears said: Sorry if I come across as complaining and not accepting . I don't think you come across that way at all. You sound wonderful, and your boys, too. I wish you would somehow find the right doctor that could help your boys. 2 Quote Link to comment Share on other sites More sharing options...
regentrude Posted April 7, 2019 Share Posted April 7, 2019 I am so sorry things are so hard for you and your family. Hugs. 1 Quote Link to comment Share on other sites More sharing options...
Garga Posted April 7, 2019 Share Posted April 7, 2019 I think of you often and pray for you. 1 Quote Link to comment Share on other sites More sharing options...
Tap Posted April 9, 2019 Share Posted April 9, 2019 (((((Hugs)))) It is so exhausting to care for family with health issues and special needs. It never stops. If you are like me, your brain is always going...going...going. Simple things like cooking a meal...requires adapted recpies or ingredients. Checking the calendar daily for the mass amount of doctors, therapists and phone call appointments. Keeping up the meds and all the changes, ordering refills, filling trays, buying supplements. Researching the crap out of everything. Finding the right doctors...and lots of wrong ones. Trying to explain details to nurses/receptionists and office staff....that they clearly don't understand, but you have to rely on them to send the message to the doctor. And they usually get it wrong so you have to make more calls. Insurance...yuck...a blessing and a curse. One step forward days (yay!!) ....and then two steps back (tears). School and helping your kids have a future and accepting the reality of what that may look like. Seeing your kid in pain, emotionally overwhelmed, physically challenged to do things that most kids take for granted. OY! I could go on and on. It is so exhausting and heartbreaking. ((((Hugs)))) I wish I could say something positive and uplifting but the reality is....it is hard. Knowing that there are lots of us out there, doesn't minimize your pain, but do know that we see you and we hear you. We understand and we are right there by you. I hope you have a few great days coming your way and some time to relax and enjoy a few moments of bliss. 5 Quote Link to comment Share on other sites More sharing options...
happypamama Posted April 9, 2019 Share Posted April 9, 2019 Hugs -- that does sound exhausting. Quote Link to comment Share on other sites More sharing options...
MercyA Posted April 9, 2019 Share Posted April 9, 2019 Hugs, Teaching3bears. I'm wishing once again for a Hive teleporter so we could all take turns doing respite care for you! Quote Link to comment Share on other sites More sharing options...
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