The Sentiment comes in many forms:
- Those types of looks. You know, the ones implying you are using your kid to get out of something everyone else is being forced to do. They know those tubes and oxygen bottles are really just there to provide the ultimate fake out. And it’s been decided that it is time for you to get over it.
- Seemingly innocent comments wrapped up so tightly in ropes of passive aggressive you find yourself taking a few steps backwards just in case the author’s head explodes.
- Long drawn out sighs that take place as eyes look towards the heavens. These are always the people who think that they would be the perfect parent for a medically fragile kid with special needs. At least their teenagers would never show up on Tuesday nights with their mouths still full of dinner as they try to make a three point shot with the now empty Diet Coke can.
And THEIR kids’ socks would match.
- Then there are the stories told of the aunt, uncle or butcher who had a kid with special needs and yet they still held multiple church callings, took their kid to every germ infested event imaginable, worked full time AND sewed matching Christmas jammies for the ENTIRE Primary.
Yeah. I ain’t that person.
I work as hard as I can with the information and tools available to me, with my right hand held to the square as I promise that I’m doing the very best I know how.
I tend to err on the side of caution.
I base decisions on long term verses short term results
It’s what works for our family and has, for the most part, kept me from throwing myself, head first, off Squaw Peak. To be honest there are days when Reed’s a little nervous to actually let me out of his sight…..just. in. case.
What works for another family of a medically fragile kid with special needs may be totally different than what works for us.
And that’s great.
What’s not so great is having someone judge you based on what their Great Grandma Ethel’s-neighbor’s-mailman’s second cousin did while raising their kid with special needs.
I’m going to come right out and say it.
(I’ve even got a brand new pair of asbestos undies on just in case.)
Unless you are walking in my family’s shoes, you don’t get it.
Nope.
Sorry.
You just don’t.
So, the next time you see me and think that I really should have my (church calling, clean car, getting all the damn daily therapies done, eating dinner at the table every night, can’t you find anything ELSE besides sweats to wear, financial and spiritual) act together because It’s Been SIX Years Already!, let me share something with you:
Sometimes it not about praying for the storm to end .
Sometimes the lessons needing to be learned come when you are drenched to the bone and jumping in fear as the sound of thunder comes crashing closer.
Sometimes it’s about holding tight to your faith as you stand your ground and find joy in the place where you’ve been called to serve.
Whether anyone else understands where you are coming from…..or not.
Word. It’s hard enough without the guilt trips, right? I don’t even pretend that I’ve got it together–I don’t and I’ll tell anyone who listens.
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When Reed and I first had Parker we’d think, “Okay, after this surgery everything will be back to normal.”
A bazillion surgeries later and we realized that ‘back to normal’ just wasn’t part of our reality.
We can roll with the punches or jump off that cliff.
I choose to roll.
Most people are great. But there always seems to be a few who’s lights you’d love to punch out.
heh.
Amen. My husband and I believed the dr.s who said after the first sugary everything would be fine. Connor had the ‘best’ of all heart conditions to fix. Little did we know that was just the beginning. What I find the hardest is those that still insist on judging us. Those who complain that you aren’t reliable since you often have to cancel – sorry but my medically fragile son has to come first. Those who make our decisions for us – we didn’t invite you as we figured you shouldn’t be around the germs- they think they have your best interests at heart but they are doing nothing more than alienating you and taking away your right to choose. And finally those who think this is some sort of competition. We are all parents and our kids are all kids – sure we have different struggles but we all struggle and are doing the best we can with what we have at the time. I am not here to judge and don’t want to be judged – I just want someone to understand – Tammy it sounds like you do. Thanks for putting a voice to this frustration.
Yeah, I’m glad you’re not that person. I’m not either.
I’m rolling too. the only way I know how.
Amen and Amen! You are doing far better than most of us. Here’s a great BIG pat on the back. I admire you for all that you do. If there is anything that I’ve learned in my nearly 50 years is that I can now say “Oh, WELL” to everyone that may or may not be judging me. Another favorite. . .”It’s not my problem if you have a problem with me” because we are all doing the best we can with the challenges we face. Love ya. Sending LOTS of HUGS your way!!!
To those people who come up with the comments that make me feel like whupping them upside the head, I’ve learned to reply with “God loves you, too.”….and then walk away. They are rendered speechless (silence is golden in this case) and I avoid having to repent for slapping them.
{{{hugs}}}
This is Joyce, I so hear you Tammy. VERY FEW on this earth know the life and death decisions you are making on a daily basis. VERY FEW have ever experienced the panic of hearing a strange noise coming from their child’s trach that could mean the next breath won’t come. VERY FEW truly understand what it means to either pay for food for the family or the oxygen for the month. It took me almost twenty years before I was able to compartmentalize the negative duds from the supporters. I wish I had learned earlier, but once I did and was able to get the bad seeds out of my life, what a difference it has made. I know it’s easy to just say don’t listen to them but I know first hand it is not so. You are doing a great job of a very difficult situation. About Squaw Peak…call me first ok…216-780-5916.
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I smell a story…
You know, Nana acts out in stores horribly- yells, etc. I have to take her to stores yet people always look at us/ me like that (what are you doing to her- can’t you do something- why is she here…) I say over and over to all the clerks so all the shoppers can here. “It’s behavioral; there’s nothing wrong with her. She hates stores, just like lots of kids”. I has one lady come up to me in SF and tell me that SHE understood how I felt because she had an autistic granddaughter and she realized shopping trips were just exhausting and draining. I looked at her kindly and said. “Oh? I appreciate your sentiment, but she’s not autistic. She just doesn’t like it here.” and kept my cool. Another lady said “I was like that when I was a kid”. Score.
Just hold your head high, girlfriend. The worst thing you could do is let it get to you. You’re a fantastic mom.
Twitter: MommaHopeful
says:
**** Standing Ovation ******
I’m laughing. And crying. And empathizing.
Pardon me…I need to go pray—you know, to THANK God for my special needs child. Cuz He don’t make no junk!
Love you Tammy.
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If those of us with “normal” kids would take a step back and look at ourselves, we would find that we are all rolling with the punches. I know that I don’t always do everything I am supposed to do and I don’t have the “excuse” of a special needs child. I know that special needs children are not “excuses”, they require so much more attention and time then anyone who does not have one (or more) can comprehend.
So, Tammy if you need someone to defend you, let me know. I can tell them where to stick their attitudes and beliefs of what you can or cannot do.
So….my mom pretty much freakin’ rocks!!!!!!!!
I totally agree 100% not only in the aspect of having a child with Down Syndrome in the family or because I’m your daughter, but because it’s so true in every aspect in life. If you haven’t experienced it, then you don’t fully understand and sometimes you should just keep your mouth shut and opinions inside.
But thankfully, Christ always understands.
Keep on, friend. If you don’t live it, you don’t know-end of story! Just once I would love for someone to ask me, “What is a typical day like for you,” or, ” How could I encourage/HELP you most right now?” THAT WOULD BE AMAZING! However, the cool thing about living with chronic disability is that most of us develope a zany humor that allow us to see beauty and progress is stuff that “normal” families would gasp at! You know the kind of stuff I mean- every family like ours has it!! There is beauty in this journey, it just needs more careful “mining” in order to be found. Bless you…
Please feel free to email if you ever need to vent. I have hillarilous stories and I know you do! And let me be the bungee before any future cliff-jumping…
Great post and so true. You don’t know what anyone is going through unless your actually walk in their shoes. I provide parent training services and I have learned that every family and child is unique and they have different dynamics so, it’s up to me to offer different methods that will work for them. I found that all methods can be tweaked and modified to fit a particular families needs (textbook cases don’t exist in my mind).
http://www.skillfulsquad.blogspot.com
Amen.
I’m standing in ovation too!!
My sweet auntie:
Some days are hard and some months are even harder. Everyones struggles and trials are so different and no one has a right to judge or make assumptions. I’ve been struggling in my own world more than usual and am grateful for your words. It was exactly what I needed to hear today. right now. to give me a little more perspective. Thank you for your strength and determination to keep fighting in your life and for your sons. I’ve gleaned wisdom and motivation on more occasions that I’ll ever be able to express.
I love you so much and you inspire so many of us!
<3 Annie
Tammy,
I came across your blog when I was reading about Tropic Thunder and the use of the word, “retard.” I have a five-year-old daughter with mild mental retardation, so I am very insulted and angry whenever I hear that word. Thank you, for taking the time to write such a heart-felt blog about it. I also want to thank you for your website. It is nice to finally read blogs about moms who are dealing with special need children. My daughter is in a special-needs pre-school, but I have not really found other mothers who are dealing with the same things. My daughter has fewer physical challenges than most special needs children, but her intellectual challenges can be exhausting at times. So, it is nice to find a community with which I can connect.
Amen to that! I think I’m going to print this post and pass it out at family functions!
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