WHO AM I TO BE MAKING THESE DECISIONS?!

[momslove]

So I'm freaking out a bit today... We've been at this long enough... I know patience helps... but...

 

We see 3 main providers for DD. We tell them what we know/see and hear their plans. We make decisions. Determining if our decisions are right or wrong is no simple task. It takes so long to see results of decisions with meds/supplements. Then there are always so many other possible factors over which we have no control. As DD get older, she gets more easily discouraged and less likely to comply with all ideas (especially dietary). Now we chose to try CBD which we must figure out on our own how to dose and how long to wait to see if it helps. She is far better than she was at times in the past, but far from ok. This is so important!

 

WHO AM I TO BE MAKING THESE DECISIONS?!

[qannie47]

You touched on what has always been at the heart of a lot of my stress.....

 

"AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure.

 

Here is one of my "Take aways" that restored some of my sleep.

 

Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone.

 

In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops".

 

That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it...

 

Sleep well!!!

[qannie47]

p.s To answer your question...You Are

[nicklemama]

You are. In my 5 years of experience with this, you are the ONLY one who absolutely has your child's best interest. You may make a few wrong turns. You turn back and take another path. It's all you can do. No one has the perfect road map to success. Go with your gut.

[rowingmom]

You are ..... the best possible decision maker for your child.

 

You know your child better than any doctor,

you see and follow symptom reactions better than any doctor,

you likely know more about your child's illness than any one doctor,

you care more about your child than any doctor, and

you have a mother's instinct.

 

As quannie47 mentioned, there is little likelihood that you will make a decision that is irreversible. Do what you think is best, if that doesn't work try something else.

 

I know as a mother facing similar difficulties and feeling very overwhelmed by the task, what you are going though; as we all do to some extent.

 

Keep researching, keep searching for informed opinions and keep trying. Never give up, no matter how many paradigms fall or how far you have to look outside the box of the mainstream.

[momslove]

I really appreciate your support!

 

I love my daughter.

 

Tonight she came out of her room after not getting to school again today. She spoke very calmly to tell me that things are getting worse. She said she feels like she's relapsing. I told her how good and important it is for her to tell me these things so we can figure out what we can change. Then she said, "But what if something good is just about to happen?" I said, "Therein lies the dillema" (spelling?). We smiled at each other and she retreated back to her room.

 

Tomorrow's a new day! Be strong.

 

And thank you all for being here!

[smartyjones]

oh momslove -- YOU are. I know where you are and how you feel but it is you and even if you don't realize it now -- some day you will know that that is actually a powerful place to be and you are the best decision maker for your child.

 

I had some trouble, not serious, just mainly discomfort and 'crookedness' late in the pregnancy with ds10. I saw an acupuncturist that really was able to help. at one appointment, she said to me, 'please remember you have all of the strength of all the woman who have gone before you in this.' so, I say to you -- please remember, you have all of the strength of all the parents before and with you on this battle path.

 

3 years ago when ds was having trouble with school and left school to finish the last 7 months of 2nd grade on hometeaching (especially sad b/c it didn't have to go that way - but we couldn't reach understanding and agreement with school) - our wise psych tried to impart to me that it was okay, because it was up to me, in the end, I was the one who could make the decisions. at the time, it felt horrible and I don't think i'll ever forget crying in her office that I didn't want it to be up to me, I didn't want to make the decisions.l

 

now, unfortunately, we are facing the same situation (although possibly a better outcome b/c of more caring school) I KNOW that that is actually an empowering situation and I wouldn't want it any different.

 

Good luck!

[momslove]

Yes, I value my right to be a decision-maker along with DH. Sickening to think of the parents who lost those rights as they made their own difficult decisions regarding their child's health care... I wouldn't want it any other way...except that I didn't want to have to be making these kinds of decisions...

 

You all are a wonderful support to me and each other. Thank you.