(First let me apologize, this is more of a rambling than anything, I am trying to clear my head, write something thoughtful, and watch my floppy handed son for a freak out session because his favorite show is on and his siblings are getting close to him)
I work 50 to 75 hours a week, no that does not include time at home, so with all these appointments that are coming together, I am struggling.
Tomorrow we have a 845 for the results of his EEG, and then hopefully he can go back on his meds.
Monday we have an initial intake at 2 in Gainesville and and Allergist appointment at 5
Then on the 8th SSI Interview and Application
Then on the 15th the initial Appointment with Psych at the hospital.
Match that up with the endless phone calls to the health department, follow up calls to doctors to make sure that we are heard, social services, insurance for coverage denials, pediatricians, research facilities...and there just isn't enough time in the world. Oh and not to mention the follow up appointments and recommendations that will come from the aforementioned appointments.
To balance Gunnar's needs with my work load at my "I'm getting paid to do this" job - its super difficult to balance...then add in the housework, the kids homework, and attention my other 3 adorable kids needs and I need the 24 hours in a day to get stuff done...and then additional time to sleep.
I recently read an article that successful people really use their weekends to relax, they don't do housework or routine shopping, or improvement projects, the relax, go out with friends, they have fun. I don't know what fun is anymore. All I use my weekends for is housework, catch up calls, applications, intake forms, and repairs on things that got caught up in an episode.
I have way to many balls up in the air, I am afraid that I am going to drop one and then it will be like dominos and everything will fall with it.
So here is what I was originally intending to write down:
1. Give me a night that I don't have to worry about the housework and can just focus on their kids. I'm not saying you have to clean my nasty toilets, but offer to make a meal, pick up their dry cleaning, do a couple of loads of laundry, send over your cleaning lady for a quick or thorough scrub (how generous do you feel).
2. Network with and for me. Maybe your Special Needs Mom feels alone, maybe she doesn't know anyone in a similar situation, but you do. Get them in touch with each other. Do a little research on your own for them...did you hear something on the news? read an article? Put us in touch with those resources.
3. Don't tell me that everything is going to be ok. Not only is it insulting, it's really not realistic for many of us. We have tons of things to think about, get down, set up, and plan for. There is no easy fix for what we are going through, no amount of love will cure them, no magic pills. We have endless appointments to set up, a future with and without us to plan for...it's not ideal and it's certainly not ok.
4. Make me accept your help. We feel like no one is going to put in as much time and effort as well will, and we don't want to seem vulnerable. We feel like if we let down our guard then we will loose control. We feel like if we let you help, you will feel burdened by us. So if you want to help, mean it, and make us accept it.
5. Volunteer to fight for our cause. Do a walk, bake sale, donate, volunteer your time at a clinic. The more you learn about my cause, the better you know my kid, the more connected I feel to you.
and finally...
6. Accept us. You might think that this is easy, but it's not. A lot of our time is absorbed by making ends meet financially, taking care of our kids, and grabbing sleep while we can. Don't be offended if we can't come out. Don't think that my kid has a disease that's contagious - he's not. The best thing that you can do for him right now is help him socialize, with understanding. Don't run for the hills.
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