Compare & Envy

It takes some time to adjust to the reality of having a child with special needs (honestly, I'm not entirely there yet myself) and in the beginning I felt like I was constantly (unfairly) comparing Rae to other children her age. While my (logical) inner Spock understood the situation and attempted to reason with my (emotional) inner Capt. Kirk (to no avail), I just couldn't stop making those damned comparisons.

After many months of mental chastising, I can finally say, "I have stopped comparing Rae to children her age without the developmental delays that she is experiencing!" It's normal for parents to compare their children to other children (we all do it...just admit it). Who walks first, who talks first, who made honor roll, who is the team captain, who was given the lead in the school play...on and on and on. Sometimes the thoughts are harmless and mean nothing. Other times they can be dangerous depending on the mental stability of the parent thinking them. These comparisons are just a part of life and it was much easier to stop comparing Rae to children that aren't like her (especially if they were older).

Since beating back the impulse to compare Rae to children within developmental standards, I now have to contend with another mental monster I never anticipated. I have to tell myself to stop comparing her abilities to children who have similar developmental delays. I know it sounds like I'm fighting the same monster, but they aren't the same. However, they are distant cousins.

I think the first time I found myself comparing Rae's abilities to another special needs child I was a little shocked and appalled at myself. Who does that kind of crap? (apparently I do) Why would you compare them, they are both struggling. Well, the answer is pretty simple. I want to shout to the world that Rae has crawled, said "mama," or is cruising around our living room like a bat out of hell. I want to post videos of her first unsteady steps or take a picture of her standing on her own with no assistance (yeah, I know it sounds a tad selfish).

The fact is...I can't. In reality, some of the things she used to do, like giving high-fives, she has stopped doing. Those little victories that sustain us have started slipping away and not from lack of us trying to encourage her to continue doing them. It's like a switch has been flipped in her brain and she just won't do them (which generates more questions for the doctors). And while we find more pieces to the puzzle and struggle to put them all together children are passing her by and my fears (wheelchair, immobility, non-verbal) start becoming more of a reality instead of just a nightmare.

These comparisons can lead to feelings of envy (another monster we all battle). This is the ugly side of the coin. The side most would be afraid to admit to, but I'm just going to lay it out on the table because I believe it is normal to feel this way as a parent of any child (special needs or not). There is nothing wrong with how I'm feeling. What matters is how I conduct myself when I irrationally compare my daughter to other children or how I handle that moments of envy that flare up from time to time. Do I let it control my emotions and wallow in self pity at our circumstances? Do I try to force Rae to work on motor skills that are beyond her ability ending in frustration and tears? Do I rob myself of feeling joy for other parents who are finally seeing the long desired results of therapy? Or worse yet, do I rob them of their joy??

I decided a long time ago to take joy in their joy, to try not compare Rae to other children because she is unlike other children, and to take a deep breath when those feelings of envy surface. Gently reminding myself that even though Rae has her own struggles they could be worse, much, much worse. It is a choice I make every day and it isn't always an easy one.

Socially Awkward

Rae is a social butterfly. She loves being around people and other children. She interacts well and plays games with people (mainly patting your face or blowing air through her pursed lips). She is socially savvy (for a toddler of course).

I on the other hand...well...I feel like a social caterpillar wrapped up in my cocoon. I can handle small gatherings of maybe 6 or 8 people, but the minute I find myself surrounded by anything larger my anxiety elevates to dangerous levels. Just the act of getting ready to go to a large party makes me act like a crazed animal. I tear through the clothing hanging in my closet deeming each item as unsuitable, uncomfortable, or just too "blah"(this part usually drives my husband batty). I look at my small shoe collection lamenting that I don't have the perfect Cinderella slipper for the occasion. I sit on my bed, tears gathering in my eyes, looking at myself in the mirror and finding all the things I feel are "wrong" with me. I don't feel attractive. I'm not fun or interesting. I'm not blah, blah, blah (just fill in whatever self demeaning thing you can think of).

At the root of all this drama is the fact that I feel socially inept...at least right now. My life for the last year and a half has been absorbed by Rae and all these damn doctors & therapists. I try to get out, but it isn't easy to just "do lunch" when your trying to make sure you have enough money to cover anti-seizure meds or some other test they (doctors) want to try. Add in the complication of working around Rae's therapy schedule plus my poor attempt at a nap time routine and...well... you get the picture. I even find myself shying away from doing free things because gas ain't cheap and I probably need it to go to another doctor appointment. I swear, I talk to Rae's therapist like they are my best friends (I have even cracked jokes about that) because I see them every week and I look forward to their visits more than Rae does. So, my biggest social interaction is Facebook, the occasional phone call (from a friend instead of a collection agency/insurance rep/doctor), going for a walk with a girlfriend, and evenings at home with my husband (usually watching something from the DVR). Exciting life right?

So, is it any surprise that when it is time for me to join the "real world" where people go to work everyday, go out for dinner with friends, take exciting trips, and have steady girlfriends to "do lunch" (or do anything) with that I become angst ridden? I should think not! I don't know how to talk to them anymore. Everything in my world is about Rae and the last thing I need to talk about at a party is her latest diagnoses or test. Who wants to be a Debbie Downer?!? (The following is NOT a real conversation...just one I made up in my head...well except my response...that part is real.)

Random Partygoer: "We just got back from amazing trip to Italy. We dined at this lovely cafe with a view of the ocean and ate the best pasta I've ever had in my life. The beaches were a beautiful shade of blue like a topaz or aquamarine and Joe couldn't keep me out of the water. It was so refreshing! We traveled by gondola through Venice. It was so romantic and wonderful that I didn't want to come home! How have you been?"

Me: "Well the neurologist wants us to increase Rae's anti-seizure medication because she's been having stronger episodes again, but he's hopeful this new combination will work. The geneticist advised us to have genetic counseling before even thinking of having more children, but she's pretty sure a muscle biopsy will give us an answer. The pulmonary specialist said Rae doesn't have asthma, but she may have reflux so we have another test in two weeks. The therapist said that we'll be ordering a wheelchair sometime next summer. And the other day Rae blew bubbles by pursing her lips together and blowing with all her might!"

Um...I don't know about you, but that doesn't sound like good party conversation.

My imagination is always worse than reality. I went to a party this past weekend. I smiled, I laughed, I chatted, I nibbled party foods, I had two jello shots (call a cab!), and I even danced a little! I only felt awkward at the beginning of the party and as more people began to arrive my angst left. I talked about Rae just a teeny tiny bit, but I mostly tried to catch up with friends I haven't seen in over five months.

So, here's my party survival tip: Your friends know your life is a bit crazy and may be a tad one sided at the moment, but their okay with that...they understand (real friends usually do). Don't be afraid to go socialize. Divert the conversation away from you or your child and back to them. You may find out they're in the middle of their own nutty adventure.

It's good to reconnect with the outside world every once in awhile...in person...not just on Facebook.

Mogan's Wonderland

"You've just won the Superbowl! What are you gonna do now?"

"I'm going to Morgan's Wonderland!!!"

"Huh????"

"So what is Morgan's Wonderland you ask?

Allow me to tell you...or better yet, allow me to let them tell you..."

Here's their Mission Statement & Vision (taken from their website):

Mission Statement

To provide a safe, clean and beautiful environment free of economic barriers that all individuals, regardless of age, special need or disability, can come to and enjoy.

Vision

Our vision at Morgan’s Wonderland is to establish a special place where smiles and laughter make wonderful memories with family members, caregivers and friends. To build a place where the common element of play creates an atmosphere of inclusion for those with and without disabilities, encouraging and allowing everyone to gain a greater understanding of one another.

So what inspired this new, inclusive amusement park? In an article by Christine Bockelman and published in Family Circle magazine (Oct 2012), Gordon Hartman, recalled a family vacation when Morgan was 12,

"The pool was empty--just a few other tweens splashing and laughing. Morgan, who has severe cognitive delays and physical disabilities, inched her way toward the group, clearly wanting to join in. "I could tell these were nice kids, but Morgan was different from them, and they didn't know what to do," Gordon says. Fighting the urge to intervene, he watched as the group left the pool."

Morgan was left alone and feeling disappointed. That was when her father decided that something had to be done which allowed, "...all kids, of all abilities, to learn to play together."

He started working on an idea and with time, a crew of architects & builders, consultations with medical specialists, and investors...Morgan's Wonderland started to become a reality. I think their website convey's their inspiration best:

"Morgan’s boundless love and ability to “soar” above her challenges were the true inspiration for this amazing park. Morgan’s desire to make everyone around her happy is magnified and expanded by the worldwide appeal of this park. That happiness will spread to all those who have special needs, their families, caregivers and those loving friends who volunteer their time to help ensure the success of Morgan’s Wonderland. It is Morgan’s fervent hope that everyone with special needs - young and old, healthy or ailing, introspective or outgoing - will be touched in a very special way by this park. An oasis of friendship . . . a shrine of inclusion . . . an unforgettable wonderland . . . Morgan’s Wonderland!"

I have to admit, I started to tear up when I read this article. It touched my heart and then I started wondering why my city doesn't have something like Morgan's Wonderland. We don't even have a decent park that has adaptive equipment for other abled children! Something should be done and I think it may be my new crusade (after we finish this muscle biopsy business and the holidays). My Rae, in all likelyhood will end up in a wheelchair for an unknown length of time (I'm still hoping to avoid it) and I want her to be able to swing. She LOVES swinging!

Until then, I will sit (not really I have way too much to do) and plan a trip to San Antonio, Texas to visit Morgan in her Wonderland!

*In case anyone is wondering, I checked with them about opening additional parks and they are looking into it, but haven't hammered out all the details. They did tell me that it takes approximately $35,000,000 to build and $2,500,000 annually to run (GULP!).