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Is it "ok" to return after a long absence?


Proverbs31:28
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I have not had internet access since last September (except a few times when I posted out of desperation using my iPhone.)

This week, I had my internet turned back on due to a new and rare diagnosis my daughter recently received. (I feel compelled to learn everything I can about it and need the internet!)

Life is completely upside down. I am burned out, worn down, exhausted, stressed, anxious, depressed, angry, aggravated, frustrated, and completely guilt ridden, all at once. But, none of that can show because my daughter needs me pretty much around the clock.

Obviously, a place like this, full of support and honest understanding of my conditions would be very helpful to me. But, I don't want to look like a bouncing ball or one who only comes around to get a dose of support when I need it. I would very much like to be a part of the community again- both to offer and receive support- but not if it would be inappopriate.

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Hello Proverbs!! And welcome back!!

Absolutely you are welcome here with open arms whenever you need us!! We will always support you the best we can!!

What's going on?? Can you talk about it?? I'm sorry your world feels upside down. That sounds painful.

Can you talk about it and tell us what's going on??

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Hello, proverbs, and welcome back! It's perfectly okay to lean on us here at any time. That's what we're all here for, to support one another.

I'm so sorry to hear about your daughter and of your distress. We're here to listen whenever you feel ready to express your feelings and concerns.

Take care, proverbs.

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Thank you everybody for opening your arms. It has been an insanely wild ride over the past few months and I am just now beginning to accept that this is real. As I said, our lives have completely changed. I have a lot of "support" from friends who want to help me with my daughter but I feel I have to suppress my emotional issues because I can't afford to be weak right now so I am floundering in that area.

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In a nutshell, she woke one night with a tummy ache. Her symptoms got worse over the next few days. Over the next 6 weeks, she spent most of it hospitalized, dehydrated, malnourished and unable to keep any food down at all. She underwent 2 surgeries, multiple invasive and painful procedures and tests, and was diagnosed with a rare disorder which has left her unable to eat. She is nauseous and in pain every day and is now 100% tube fed. She gets only water or ice chips by mouth. She is actually improving symptom-wise since she has been off foods, but the cost has been high. Her feeding tube, medication schedule and related issues leave me physically, mentally and emotionally drained. She begs for food and I have to tell her "no." She wants to be angry at someone, so I'm the target most days. I brought her to a child psychologist on her doc's suggestion but she absolutely refuses to speak to her. She blames the doctors for what has happened though, logically, she knows they didn't do this to her. At this point, none of her doctors know if this condition will be temporary or permanent. The specialist she sees says he only diagnoses 1-2 cases per year and her pediatrician has NEVER had a case. So, I am left trying to research, understand and deal with this as best I can, but there is very little information out there because of its rarity.

I already have a tendency to isolate. Now, its easier to do since it requires so much to take her out and about. (I actually have a bag of supplies and meds I have to pack anytime we leave the house.) Plus, she doesn't want to be around food or activities that she can't do, so we don't go to restaurants, parties, etc.

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Proverbs, this must be so painful and difficult for you and your daughter. :( And because it is such a rare medical problem you are left with so many questions and little information about what to expect. I can tell you are being a wonderful and caring parent to your child and doing everything in your power to help her. I'm glad there are people close by who can support you too. I can't even begin to imagine how stressful and anguishing this must be for you. I understand that you feel you can't let down your guard, but I think it is equally important to meet your own emotional needs right now. Taking care of yourself will help you in caring for your daughter. I hope that you will consider leaning on your friends for support. Of course you can lean here too at any time.

Have doctors been helpful in guiding you with how to obtain more information on this? I certainly hope so. Taking your daughter to a psychologist was a good idea. I can understand her anger about this situation. Maybe in time she will begin opening up to the therapist. I hope your daughter is feeling better very soon, Proverbs.

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