I talked with someone today who really touched me.  She has known me for a while although we aren’t very close.  She asked me how I was doing and was very concerned for Christopher,Kevin, and Wayne.  It feels very good for people to ask how things are going.  During our conversation she shared with me that one of her own children faces a tough medical situation and she has had a tough time dealing with it, recently, it seemed.  I was very interested in her situation too and I can sympathize and empathize very well with her.  She is dealing with doctors who don’t seem to care about the situation she is going through.  We have gone through this with Christopher several times… we take him to a doctor… they won’t answer our questions… they don’t think something is serious enough to do anything… I know the drill (and, obviously, my friend understands it all to well too.)  At the end of our conversation she said something that has been said so many times to us (and we’ve said it so many times to others…) She said “I know it’s not as bad as what you are going through…”  I understand this sentiment and why she said it, but my wife and I have learned over the last 5 years that it is OK to feel strongly about our kids.  It is ok to worry about little things.  It is ok to have feelings.  We don’t have a choice in going through it … in taking care of them… we can be strong in the presence of others… but in the dark of night… when no one else is around… it is still our little babies… our innocent, beautiful children that suffer… and WE have to take care of them.  It is ok to feel bad for them (but just a little), to think “Why is this happening?”, etc.  And we should never feel guilty for feeling this way just because it isn’t as bad as it could be.  To my friend and anyone else who has a child with a problem that “isn’t that bad” or “isn’t that big a deal”:  Your child is just as important to you as my children are to me.  And you don’t have to “apologize” for talking to people about it or for feeling the way you do.  Both of those things (talking to someone and allowing yourself to go through the feelings of anger, resentment, hurt, etc) are what allow us to be strong.  And we must be strong because…

WE have to be advocates for our children.  Others won’t.  Even some of the doctors we see won’t.  We have to know… we have to really understand how it affects our children so that we can teach them how to be strong – in face of their problems.  Sure, there are always other cases that are worse… but that doesn’t “take away” the problems our children face.

Keep loving your kids and stay strong!  I sure love mine and I hate, hate, HATE that they have to go through what they do.  I don’t ever want to stop feeling that feeling of hate for the disease… that is what keeps me vigilant against the problems that could come up and make it worse.  And most of all… don’t feel sad for wanting the best for your children even when others think “oh… it isn’t that big a deal… I see it all the time…”  or “it isn’t thaatt bad…”  That is just ignorant, cold, unprofessional, and rude.  Take care!

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