This Crazy World of Make-Believe–Or: That’s My Life

Or…Why Kat’s Cafe & Kat Succumbed to Being a Special Needs Mommy

I’ve posted about this before, but you know, I think even *I* forget it sometimes, this thing called being a special needs parent and what it means in our lives.  It’s not a glamorous life. In fact, being a special needs parent is more like: YWF7MPZSVUCK 

  • A war zone – especially when each kid is having their own version of a *no good horrible day*
  • A daily choose-you-own adventure – do I stay consistent and send them to a time out for hitting, prepare to listen to 10 minutes of screaming and throwing, and a child who still has no idea what he’s done wrong, and another hour of mood swinging from angry at mom to annoyed at mom to cuddly at mom?
  • A TV medical drama in disguise – complete with exciting, horrifying seizures and colorful lack of oxygen blueness (no, not the smurf-like blue of fun and flowers but the grayish-blue of brain cells dying … just sayin’)
  • Daily question and answer sessions – sometimes the same question, sometimes not, but always asked without regard to whether one already knows the answer, and always in rapid success … *groans* (Seriously, have you ever tried to answer 20-30 questions in rapid succession, only for the kid to have a loop and repeat function set in their brain so that they do it all over again 20 minutes later?)
  • I could keep listing … but I think I’ll stop here and let you add some fun in the comments (Why, yes! That was a *hint*!)

So apologies … not for, you know, being a mom, but because I let some of my writing slack and didn’t post to the Cafe last week. Read on to learn more about what happened and how you can help.

Why being a special needs mom sometimes sucks

My son, Logan, has had multiple issues over the last couple weeks, after being seizure free most of the summer he ended up breaking his seizure-hiatus by having a small cluster of them at school. He ended up having a few others here at home over the course of the following week. The lovely non-breathing variety.

In honor of the occasion (sarcasm, I love thee) my first posting to the new section of the Cafe, our Writing Corner, was my well-received “In The Silence,” which was a non-fiction literary mosaic about Logan, his seizures, and some thread. While not everyone understood the irony, I had a quiet giggle over my choice. What? I never claimed to be sane. :-)

What you can do–regarding my sweet Logan and his seizures?

Not a thing. Unless you have an amazing scientific breakthrough (then, um, send me a message! Seriously!) But you could support us a little by offering thoughts and prayers for my little guy and for our family.

Also, my dear friend Caryn Haskula, over at Living with Logan, posted a sweet challenge last week to help give me a bit of extra support and love from my online friends. I would love to see some of you go see her and tell her thanks by exploring her blog! (she’s another Logan mommy – we gotta stick together!) Caryn also mentioned something I have been neglecting to talk with you guys about here. Me.

What about me? How Fibromyalgia has become my own special needs ‘need’

I don’t talk about it often, because to me it isn’t that important. But that does a disservice to you guys. Because part of being a special needs parent, I think, is making sure we take care of ourselves, that we acknowledge our needs. I’m kinda horrible at doing that. So why would I share anything with you guys when it proves that point. *grin*

But the fact of it is that I do have Fibromyalgia, and at times it gets quite severe. My flares (when my symptoms worsen) generally send me to bed for several small naps a day, so that I can still try to get work down in between. My husband is wonderful at helping me with this, and we have our own dance of sorts, as he helps me with my Fibro while I try to help him with all his health problems. We’re a ying/yang couple in a big way because of this.

But having Fibro also means that when the kids many problems sometimes lead to higher degrees of stress my flares get worse, so I’m in more pain and more fatigued as a result. I usually combat this with a healthy (read: copious) amount of caffeine, naps whenever possible, and a great little thing I call denial. It doesn’t always work so well. :-) But I do tend to get my work done.

Then I hit a wall with my symptoms earlier this week and it was all I could do to stay on top of my paying work (I did mention I’m a freelance writer, editor, and assistant? Just a little plug!) after dealing with Logan’s continued issues. It seems I’m only human after all.

Who knew?

Some special needs fun and support for me and you!

One way of making sure we take time for ourselves is to find creative ways to express our emotions. That’s why the Writing Corner was born, and why I would be honored to have you join me in this special section of the site. You could reply to a few polls I’ve posted on the Cafe Facebook Page, and you could also submit something expressive of your own to the Writing Corner. To find out more, read the intro post to the Corner.

Being a special needs parent is difficult, but you can help yourself and others by finding ways to express those emotions, and by staying true to your own purpose and passions in life–what have you done to express yourself today? 

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://mycornerofthepond.wordpress.com/ Dani

    I think you need to be kind to your self. Your needs are just as relivent as your sons needs. You have to be healthy for him. (Ya, I know I’m not one to talk).

    • Katrina

      You know as well as I do how difficult it is to follow that sage advice! LOL While my needs are relevant, they aren’t as easy to deal with when there are more important things to worry about. And :P because you aren’t really the one to talk. Silly mommy!

  • http://specialmomspace.com Michelle

    Boy, I totally understand how it is with the seizures. My CJ is still having them. They were almost daily for a few months and now he’s on a high dose of Lamictal. The problem is for a few hours afterwards he can barely sit up. It’s too strong so back to the drawing board. He can’t function this way when school starts.

    What does Logan take?

    Michelle
    P.S. – You can make this special needs parenting thing glamorous from time to time! I’m doin so by doing it up fashion style for Fashion Night Out in NYC on Thursday ! I need a break and this is it.

    • Katrina

      Michelle – it’s so hard, isn’t it? The watching and the waiting and the reacting, and being helpless during it all? Lamictal was the miracle drug for both Bobby and Logan. It stopped Bobby’s breakthroughs, though he’s had a small one here or there, for over six months now. He takes it along with Tegretol for that level of control. Logan takes it along with Keppra for partial control. We’ve had weeks and months where Logan might go without having a seizure (not as much recently, but still), but he might have dozens a day when he’s having a really bad day. Bobby was having hundreds a day when he was diagnosed – though his were petit mal seizures.

      Finding the right dosage is a crazy battle and we’re at the best dosages for both of my guys who still have seizures (Andy’s now just around 5 years seizure free! YAY), even though we don’t have total control.

      I have friends who help me get away from it all every once in a while. And I have a major trip coming up where I get to be a fangirl and squee at all the big stars – it’s like being a teenager again! My friend gifted me with the tickets and they don’t take no for an answer as this is my yearly chance to get away and relax. And I love it! Yours sounds like an awesome opportunity as well. Will you write about it? You should! us special needs moms need to write about being silly and having fun sometimes too! Shall we make a challenge? :-)

  • http://mamalousgems.blogspot.com/ Lisa Albaladejo

    Hi Kat….you sent me a message on Twitter but I could not reply as you didn’t follow me. My blog is http://mamalousgems.blogspot.com/ and my Facebook page is http://www.facebook.com/#!/pages/Mamalous-Gems/111541772237857 if you would like to follow. Thanks for the interest!
    Lisa

    • Katrina

      Lisa – Twitter and I are having a love/hate relationship. I Love it about 85% of the time – when everything works as it should. The rest of the time I seem to be unfollowed at whim, and it is quite annoying. I am sure I followed you. I wonder if there are gremlins in my laptop? In any case thanks so much for stopping by and I will look forward to visiting you as well! *hugs*

  • http://jbmthinks.com jbmthinks/sportsparenting

    Katrina…thank you for sharing. You inspire me, you amaze me.

    • Katrina

      Wow Janis – some simple and deep words. How very humbling. I’m really just a mom, my friend. *hugs* Thanks so much for stopping by!

  • http://www.wow101.com Alexandra McAllister

    Katrina, great article! You must take time to put yourself first because if you’re not in good shape, how can you be in shape to help out someone else. You’re a wonderful mom and an amazing woman! Much love and blessings.

    • Katrina

      Alexandra – what sweet words. Thank you! I know if I’m told enough I’m supposed to believe I am a real mommy, but we spend years getting to this point of not putting our own needs first, and that is a hard habit to break. I so appreciate your visit to the Cafe and your very sweet words. This special needs mommy is sometimes still a newbie to the world of putting herself first, but I’m trying!

  • Ingrid

    You are a super mom! There is no other person in this planet that would love your kids as you do! Always make time for yourself because there is no one like you!

    • Katrina

      Ingrid,

      I spent years trying to be ‘super mom’ only to discover that it wasn’t something within my grasp. At the end of the day I’m just a mom, a special needs mom, and I am doing the best I can, the same as countless millions the world over. No super powers here, I swear, unless being able to do CPR with my eyes closed counts? *looks hopeful*

      Thanks so much for visiting and I hope to see you again soon. I appreciate your very sweet words!

  • http://yourfunfamily.com Melissa Erickson

    Katrina, I hope you can find some time for yourself. You deserve it! You are a very strong woman and you are doing an amazing job juggling everything.

    • Katrina

      Aw Melissa – thanks. How about I borrow a little “fun” from your site, mix it in real good, and see what develops? My strength is in Him, not in myself. By myself I am weak, a shell of the woman He gives me the strength to be. Faith is my greatest juggling tool. *hugs* Thanks so much for your visit! Come back and put your feet up here at the Cafe any time!

  • http://normadoiron.net Norma Doiron

    First off – let me say, I love your blog! The colors, the design… it is all so beautiful. Makes me want to put my feet up, hug my coffee and spend the day with you. (-_-)

    I confirmed what has already been said: you need to put yourself at the top of your list. I`m sure you’ve heard that before – now you just have to believe it… down deep where it matters. Luv to U, Katrina. x0x0x

    Norma Doiron

    • Katrina

      Thanks so much for the blog design comments – it’s been a slow and steady makeover, and I still have some tweaking to do. I get a real kick out of it though! And hey *clinks cups* Here’s a cup of joe on me!

      Norma, it only it were as easy to believe and practice as it is to say and read. :-) But I do think being open and honest about it can allow other special needs parents a chance to realize that their own fears and hangups are par for the course. I hope so anyway. I’d feel quite lonely if I were the only person in the world who ever felt this way. LOL Thanks for visiting the Cafe Norma and come back anytime, the next cup of coffee is on me! :-)

  • http://adamsorganizing.com Elise Adams

    You ALWAYS inspire me. Thanks for keeping it real! You meet your struggles with such great humor and hope. Sending lots of sleepy hugs your way :-)

    • Katrina

      Running late in responses but I just had to drop in and say thanks for the encouraging words, Elise! As you well know, just because your words sound well-put-together doesn’t mean that our lives are. It’s a constant, ongoing process. Sleepy hugs are the best! *sleepy hugs back*

  • http://www.kimgarst.com Kim Garst

    Sweet lady you AMAZE me. You have an incredible way of infusing humor into a really tough situation. To say I am in awe would be an understatement. I cannot imagine how hard things can be for you and your family from day to day but you meet it with determination and a can do attitude. Love you, girl!

    • Katrina

      Running late on my responses but I HAD to reply with a hug and some blushing. I am just another woman, another wife, another mom. There is NOTHING about me that should inspire awe – since I don’t know that putting these emotions and thoughts into words is anything more than stringing together words in pretty patterns. :-)

      That said, if my pretty words (and not-so-pretty ones, too) can help others understand what it’s like to be a special needs parent, when sometimes you live for only the next sleep-deprived moment, then putting it all out there is worth it. If it lets another special needs parent know that they aren’t the only ones who ever feel this way – then it is worth it. *hugs* back to you Kim – I’m not vocal about the challenges I face with my own health, because they do tend to fade away into the background under the heat of being a parent, a mommy, first.

  • http://www.thrivingwithceliac.com Nancy Olson, The Celiac Warrior

    Your post touched my heart, I feel for you but have never been there… I have a couple of friends that have delt with seizures in the past prior to being gluten free and they have always said how scary it is when it happens. I wish you the best of luck with your kiddos! Blessings~

    • Katrina

      Thanks so much for your especially sweet comments Nancy, you and your words are greatly appreciated. :-)

  • http://www.adhdchaos.blogspot.com Lizette

    It’s funny how all us special needs mommies share the same emotions, the same ups and downs and bone tired exhaustion when we are just too tired to cry and end up laughing. My daughter has ADHD and the main problem at the moment is managing sensory issues. The rest is under control with some natural meds. I agree that you should make time for you. Your kids need you and unless you take care of you, you can’t take care of them.

    • Katrina

      I do think it is quite telling about how the effects of stress impact us individually, in such similar ways. The exceptional, ongoing stresses that pile up when you parent a special needs child, I think, account for higher levels of mental issues and physical problems in parents of special needs children. I thought at one time about doing a thesis regarding it. Then real life took over. :-)

      Sensory issues can be tricky, indeed. They can affect a child in so many different ways. Is your child sensory seeking or sensory avoidant? Logan is seeking, Bobby is avoidant, and Andy is a fine mix of the two … and it’s unnerving how differently they all react to the same situations!

  • http://micheletremblay.com Michele

    Thanks once again for showering us with your strength and wisdom. I love that you have opened up a writers corner for acts of creativity. Hope some of you step into the world of flower design. It brings lots of joy!

    • Katrina

      Thanks for the especially sweet words, Michelle, again. I so appreciate your visit and yes … I am really excited about the Cafe Writing Corner. Flower design? You need to share more details – it sounds like a lot of fun! :-)

  • http://SusanCanHelpMe.com Susan Preston

    Wow! I had no idea that you had your own health problems. You inspired and amazed me before I read this and now even more so. I always wondered how you do all that you do! You are such a gift in so many people’s lives. Thank you, for being YOU!

    • Katrina

      Susan – I don’t normally share about my own health issues – it’s one of those *things* I guess – my issues always seem (to me at least) to pale in significance to those of the rest of the family. Thanks for your sweet comments my friend! I’m getting used to the wonder of being ME so I guess I’ll stick with it for a bit longer. LOL *hugs* Thanks again!

  • http://www.deborahturton.com Deborah Turton

    You are such an inspiration Katrina and yes, thanks for “keeping it real” as Elise said :) Sometimes situations and life just ‘sucks’ but that doesn’t mean that we have to ‘suck’ at life, and you my friend demonstrate a life of ‘making lemonade’! Lot’s of love, Deb

    • Katrina

      Thanks Deborah – I have my moments. I just try to balance them with the very real hope I have found in not only my faith, but in the connections I have made with other phenomenal people. :-) *hugs* Back at you and thanks so much for stopping by!

  • Carol Giambri

    You are an amazing wife and mother Katrina. My husband had a 1 time seizure over 35 years ago and healed in 6 weeks. For all those readers here I pray that same thing for them–the healing. I believe a daily massage for you is in order! We’re hear for you so know it’s okay to be “real” without being judged.

    • Katrina

      Aw thanks Carol. It’s scary watching someone you love have a seizure (my husband also has epilepsy so I get that one, definitely!) and while I gave up on actively praying only for healing a long time ago, I always pray for His will to be done. I think, sometimes, God places us on a path not for His grace to be shown in healing, but in compassion and comfort He shows and that we in turn can spread to others. “He comforts us so that we in turn can comfort others” and thank you! Sometimes being ‘real’ is a scary thing – but I think it is so important!

  • http://tinawinterlik.blogspot.com Tina Winterlik

    Wow Katrina, your awesome, you have this really great sense of humour and your really dealing with heavy kaka!! I am sending love and positivity your way. May you be blessed with peaceful days! Your AMAZING!! God must truly smile at your patience. Thank you for helping me keep my realities in check. {{Big Hugs}}

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