Battles against terminal illness, anxiety, and life!


I will try and say this as sweetly as possible considering you weren’t the offender. Consider this a Public Service Announcement of sorts. I will openly admit that I have a button. We all have a button that if people push, we could very well just lose it. My button just happens to be bigger than most and easily results in a less than pretty set of tears and plenty of eyebrow knitting. If only I were a pretty crier. *sigh* Something to aspire to I suppose. Anyway, this doesn’t just apply to parents with terminally ill children but to all parents of special needs children.

Here goes…

Things not to say to us:

1. Anything that starts with, “Have you tried.” No matter what the try is, please just don’t. If that thing worked, this condition wouldn’t exist anymore.

2. “I just know they will get better.” Unless you have a crystal ball that works, please just stop. You don’t know. If you do, then you must be some superhero who could stop crime before it stops! Now that would be a skill! At least a better skill than upsetting parents with special needs or terminally ill children. We work HARD to come to terms with what our reality is. Please don’t step in and rock our boat. We work hard to keep it balanced.

3. Anything that involves God or Jesus unless you know that person’s religious beliefs. Just remember this argument in itself is a slippery slope. You may talk about “His plan,” but remember that plan will involve the death of a child (at least in my case.) What parent wants to hear about that plan? While these words may be comforting to some, they are not comforting to all.

4. Please don’t proclaim that miracles happen. Yes, I am well aware that they do, but in my world I can’t bank on one. I can’t put hope in that bucket. I must plan for the worst. My reality is that I will bury my child. If a miracle happens, allow me to be surprised by that. I would rather that than vehemently believe a miracle will happen and then be blindsided when it doesn’t.

5. Never ever say, “I know how you feel.” Well, unless you too have a child with the same special needs or have lost a child (not a parent, sibling, cousin, friend…a child…YOUR child.)

6. Do not ever tell that parent how he or she should feel. Do not say, “Be positive!” You may have caught us on a down day or perhaps we are just doing our best to cope on that given day. We really don’t need to be chastised. Walking in our shoes is tough! We can’t be sunshine and daisies every minute of every day. I can bet you aren’t! Besides, I am as ridiculously positive as they come…annoyingly so.

So, now you are scratching your head and wondering what you are actually supposed to say. Well, we parents are all individuals and each need something different. We get different things from different friendships. Sometimes, simply a hand squeeze and no words does the trick. I am always appreciative of a, “That sucks.” However, I am blunt like that. It does 100% and I appreciate the acknowledgment of that. “Is there anything I can do to help?” works well. “Tell me more?” and then listen sincerely is a sure bet. If you mean it, “I’m here for you.” “It sounds like you have a very much loved child,” is nice to hear since we typically bust our tails to care for our kids.

So, just to recap. If you overhear a woman telling an instructor at the gym that she is sorry if her phone rings but you can’t turn it down all the way in case there is an emergency with your medically fragile child, then hold on to that information for over a month, and then spring it on her out of the blue while she is preparing for class…yeah, bad idea. Then, proceed to say the above numbers one through six, expect that woman you blindsided to want to knock you over while you are in balanced half moon. You will have earned it. Alas, I am too nice and instead practice my expert eye rolling skills and deepened my forehead butt. You know what I am talking about. That lovely crease from pulling your eyebrows together accompanied by the eye roll you mastered as a teenager or perhaps four year old if you are my daughter. Just please remember that people have fragile emotions. Be gentle with each other. Sheesh, this is my son she was talking about. If I can create a miracle, sacrifice myself, do absolutely anything to save him I would. *sigh*


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