Tag Archives: special needs

Raw and Confidential Confessions of a Special Needs Mom

Confessions of a Special Needs Mom

I’ve written this for one reason: to give light and insight into the emotions of a club I hope you are never a part of: the special needs club. Specifically, the special needs club of a rare condition. You see, unlike cancer and autism (that have their own difficulties)… no one has ever heard of us. There are several conditions that fit this club, obviously L1 being my club of best fit.

1. There’s a Difference in Being Alone and Being Lonely

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He needed brain surgery? We’ll be here awhile. He needs observation for seizures? Darnit, I hoped this wouldn’t happen. We’re going to give him fluids for hydration? That was easy. While we’re at it, lets grab a renal ultrasound, stomach xray, and brain MRI. Check! Some mamas and papas get very lonely. Some mamas and papas need help making time for each other. Some mamas and papas want some time to breathe. Some mamas and papas just want to sit silently with their children. If you want to help, knowing what they need is a lot more helpful than pushing your agenda on us!

2. We Remember Who Respects Us…
We Remember who Doesn’t…

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Did you text us love hope and prayer even when we forgot to text you back? That gives us reassurance. Were you in the hospital 24 hours straight showing support in your way, not ours? That causes us stress. Did you ask us what we wanted for dinner and when you could drop it off? That shows us love. Did you make a fuss when we mentioned it wasn’t a good time? That pisses us off. Did you pray from the quiet of your bedroom? That gives us comfort. Did you ask for favors? That off-sets our focus. Did you reply with any ideas you had to our facebook status questions? That gives us room to grow. Did you reply to facebook statuses with messages we were doing something wrong? That’s just plain silly.

3.  Never Disregard Our Research

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Okay okay okay. I get it! Really! I worked in a vet clinic for four years, my best friends are veterinarians and pharm D’s and I’m fully aware they hate hearing…. “I looked it up on Google and….” But let me give you something to think about……

More doctors have looked at my son than I can count, literally. There were 11 doctors in NICU, 7 or 8 at his current pediatrician’s office (he’s seen 3 of them), 9 or 10 specialty offices, we’ve Tweet: How much do you know about L1 Syndrome? Did you know it affects fewer than 5,000 boys?been in the hospital twice since NICU discharge with rounds twice a day… usually that means two teams of doctors and each team has 3-6 doctors on the team. This doesn’t include nursing staff, support staff, therapists, and nurse practitioners. Want to know how many of those doctors had heard of L1 Syndrome? NONE. The Genetics Doctor and our Occupational Therapist had heard of x-linked hydrocephalus before, but both had information that were myths.

My point: I do my research. Four years at N.C. State University taught me how to conduct proper research. It doesn’t matter if your sister is a nurse, aunt is a pediatrician, or dad is a kidney specialist. Unless you are answering specific questions I’ve already looked up or you are an L1 Syndrome Specialist just because something happened similarly to your nephew’s best friend’s cousin…. or just because your sister has hydrocephalus…. I’m willing to bet the situation was entirely different.

 

4. Don’t Remind Us What Isn’t Done

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We are fully aware that our floors need vacuuming, cars need cleaning out, and baseboards need scrubbing. We also understand that you want us to run to the mall with you, catch a late night movie, and hit the next party. We comprehend the fact that we (to you, anyway) become hermits. It isn’t rocket science that we are “different” from you and your family. Instead of pointing all this out, why don’t you just reply to our random texts with a “hey! I was thinking about you last night! how are you?” Why don’t you just take out our garbage. Why don’t you just shout out to us on facebook – we might see it – eventually 🙂

 

5. Paperwork and Phone Calls are More Exhausting than Therapies and Our Jobs Could Ever Be

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Lemme tell you. I work for the post office, outside the home. I also take care of my 2-1/2 year old and 8 month old. I have two dogs. I have a husband. NOTHING is more exhausting than spending 3 days straight on the phone with insurance companies, billing and claims departments, and doctors only to realize I am no closer to having anything straightened out than I was 72 hours ago… then I wonder why I am trying. No one else is.

6. THE NUMBER ONE WORST THING

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Tweet: Be the difference: help spread the word that L1 Syndrome exists! http://ctt.ec/ufT9b+ Is that NO ONE HAS EVER HEARD OF L1 Syndrome! Help me change that. Change the world. Do you have a picture of my boy Noah or another L1 Baby? Instagram and tweet hashtagging: l1legend, xlinked, xlinkhydrocephalus, and my own tag – l1syndromeawareness! SPREAD AWARENESS! There is no cure. But, there are treatments. And, since no one has ever heard of it…. there is a clearly a need for people like you who are willing to stand up and make a difference.

7. We Need Your Prayer

Moms, Dads, Brothers, Sisters, Noah himself, and extended family too…. we all need your prayers. One thing parents of special needs children will never complain about: too much prayer.

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To Recap:

1. We don’t fear the hospital, we dread it.
2. We remember who respects us, and who doesn’t.
3. Never disregard our research.
4. Don’t remind us what isn’t done.
5. Paperwork and phone calls are exhausting.
6. The #1 Worst Thing: No one knows us
7. We Need your prayer.