Sun Beams: Walk the Talk

It's been over two weeks since the RAEdiant Striders braved the inevitable downpour and walked for the Epilepsy Foundation on March 31st. A lot has happened in those two and a half weeks which is why this post is late in coming.

The RAEdiant Striders!

First, I'd like to say a big THANK YOU to those that came out to support us. It meant the world to me that you came even though we all knew a torrential rain was heading directly for us. I even cried a little because even though I know we're not alone there are times when I feel like we are and seeing you all gathered there in spite of the weather overwhelmed me with feelings of the support and care you have for us.

Rae was fascinated with the purple balloon.

Secondly, a big THANK YOU to everyone that donated to our walkers. By the end of the weekend we raised $355 for the Florida Epilepsy Foundation. Their grand total for Walk the Talk was $44,986 and we couldn't have done it with out your contributions.

Our little RAEdiant Strollers ready to ride!

Thirdly, a big THANK YOU to those that wanted to be there, but were not able to due to prior commitments or illness. I appreciate that your hearts were with us.

Tuckered out after an exciting long day.

The Ostrich Egg

If your a fan of cooking shows like Top Chef or Iron Chef then you've probably seen an Ostrich egg make an appearance from time to time. This egg is the Grandaddy of all eggs. It is HUGE! The average Ostrich egg is almost 6 inches long, 5 inches wide, and weighs in around 3 pounds! The chefs on these shows usually attack this culinary delight with gusto and a hacksaw. No cracking this baby on the top of your counter.  In order to get to that golden goodness locked inside they have to saw their way through the protective shell. So, at this point you're probably asking what this has to do with being a parent of a child with Special Needs...

I need this to develop a a secure, hard, difficult to crack shell around myself. Not to keep people away, but to keep some of the things they say from penetrating my defenses and puncturing the core of my emotions. When everything first started developing (or not depending on how you look at it) with Rae's condition I was so vulnerable to everyone's seemingly harmless words and phrases. I didn't want to be around some people because inside I knew they'd open their mouth and eat their own foot with gusto. Not even realizing that they did it...you'd think they'd their own taste toe jam, but apparently it has no flavor.

Initially things like, "What's wrong with her?" would illicit an emotional eruption inside that would rival Mt. St. Helens and I was almost ready to burn the friendship bridge. Fortunately, over the last few months I've gotten better at controlling those initial responses, but every once in awhile someone still manages to find the chink in my armor. Phrases like: "She'll grow out of it," stated very matter of factly like they are some medical expert when it comes to Hypotonia sends shock waves throughout my body. I manage to choke back any retort that comes to mind, which is usually a very snide sounding, "No, she won't because it doesn't work that way and thank you for reminding me of that little fact." My other personal favorite: "You're lucky she stays where you put her. I have a hard time keeping up with Baby Doe." That one still gets past my guard because what I dream about more than anything in the world is having to chase our daughter around the house. I long for the days that I can't "keep up with her." They can't arrive fast enough.From time to time we also hear the excited exclamations, "Oh, she's getting so big. I bet she'll be walking soon and you'll be chasing her down!" To which my mind screams, "No she won't. We're hoping that maybe she'll walk by two." That one always manages to hit my heart and leaves a burning sensation that lingers for a few minutes.

By working on my Ostrich shell, so much better than chinky armor, I've been able to start nodding in silence with a slight smile and letting them speak their piece. Most people that are aware of Rae's condition don't fully understand it and aren't really sure what to say. So, they generally say whatever makes them feel better not realizing that it sometimes hurts me. Others who are aware seem hesitant to ask questions, probably out of a fear that they'll upset me, so they say generic things that by default sting a little as well. In an effort to not make the situation any more uncomfortable for either party, I have diligently constructed my shell (still working out some of the kinks) and smile without any real comment. Is it honest? No, not really. Is it fair? Nope, life never is. Is it a livable compromise? Yes, but it requires work.

You have to be willing to understand and accept that they don't mean to hurt you and are truly wishing the best. They say what makes them feel comfortable and what they hope makes you feel supported. It is awkward for everyone and a snide or negative retort on my part will only make that worse.

I'm going to leave this with a bit of advice for those out there who have friends or family with Special Needs children.

1. Don't be afraid to ask questions. Sometimes having a better understanding of the need will make your relationship stronger and enable you to support those people more effectively.
2. Listen. For the love of everything you hold dear...LISTEN! If you ask a question be willing to hear the offered answer. On occasion, when trying to explain Rae's Hypotonia, "She'll grow out of it," comes flying out of someone's mouth and I know that it is a futile effort to say anymore at that point.

So, here's to the Ostrich Egg and the new sense of security I feel in having it's protective shell encasing my vulnerability.

A Cat-astrophe!

Some relationships that develop while learning how to navigate in the world special needs will become significantly more personal than others. You may not feel as close to your child's Ophthalmologist as you do their Neurologist. I think it would depend on how often you see that particular specialist. In my case, I have become very attached to Rae's physical therapist. We met Anna through Early Steps and while I was nervous about having a new person come into our home every week that apprehension quickly faded away. Now I look forward to hearing the buzz of our doorbell every Wednesday morning. Unfortunately, our patient/therapist relationship isn't without some kinks.

Tummy time with Anna.

During our initial meetings with Early Steps, I made mention that we were the owners of three, strictly indoor, cats. That means we have cat dander and hair pretty much all over the place. I wanted them to make note of this so we could be matched with a PT that didn't have allergies, especially to cats. In an effort to stress this feline fact, I mentioned at least three separate occasions. Satisfied that I did my part to avoid developing an attachment to someone that couldn't stay I put the potential catastrophe to bed and moved on. Imagine to my surprise, after waiting for two or three weeks for Early Steps to find a PT, when I first spoke with Anna and once again asserted that we are a feline friendly home she admitted to being...you guessed it...allergic to cats!! Like you didn't see that set-up coming a mile away.

Tigger

Houdini and Moo-Shu

Aaaarrrrrggggghhhhhh!!!!!

Well, she was still willing to give it a try and I was determined to do everything I could to make her comfortable outside of getting rid of our cats or pumping her full of Benadryl the minute she set foot through our door. So, every morning before Anna arrives I vacuum our entire living room (including the furniture), chase down the hair balls which seem to multiple over night, and corral the cats into our bedroom. This effort has been richly rewarded by no incident of an allergy flare-up. That us until recently...of course.

Anna and Rae working on head control.

During the holiday season, when everything is hustle and bustle, I was not as dedicated to making sure the above noted measures were completed prior to Anna's arrival. The first week she made no mention of it and everything appeared to be going as usual. The second week the sneezing began and I ended up hunting for tissues. I vowed that the next week would NOT be the same and I would do everything that I usually do to make sure she was comfortable. I was overwhelmed with contrition and apologized profusely for my lapse in housekeeping.

Well, that weekend I received a call from Anna...I was dreading that call because in my gut I knew it wasn't good. She said that for two or three days after her visits she experienced discomfort caused by our cats. I felt horrible and then afraid of losing her. She offered to try another week or we could contact Early Steps and inform them we needed a new PT. Panic was beginning to wash over me. What if they couldn't find someone for another two or three weeks? Who was going to work with Rae? What if the new person doesn't like us or we don't like them? What if they heap loads of guilt on top of the already gigantic pile of guilt I already feel over my perceived lack of follow through? I can't loose Anna!

Rae and Anna playing in her sensory box.

Ultimately, it is not my choice. It is her and that is what I told her. I don't wish her to continue coming here and being uncomfortable for days after. I reassured her, yet again, that I was willing to give it another try if she was comfortable and also willing.

Our next visit went better and even though I am recommitted to making this relationship work I feel like we were just handed our two weeks notice. I don't think I will be completely confident that Anna isn't leaving until another month has elapsed. Here's to my New Years Resolution: keep things clean and contained for Rae's sake. I really don't wish to start over with a new PT.

Good Intentions

As any parent will tell you the minute you have that "gut feeling" friends and family with good intentions come out of nowhere. They offer you advice, support, theories, best guesses, sympathy, and hopefully appropriate humor to help lighten your worries. Every once in awhile those good intentions are totally wrong. After my husband and I decided to postpone the MRI and give Rae a chance to "catch up," I was met with some harsh criticism from a friend with good (as they viewed it) intentions.

My friend is a member of the medical community, in the land of therapy, and naturally I turned to my friend for some support and maybe a little instruction on what we could be doing, therapy wise, to assist in Rae's gross motor skill development. While sitting at their home I shed tears of frustration over how the simplest task will be more difficult for our daughter. My friend showed me a few exercises we could do that would help strengthen her core and get her "rolling" in the right direction. Unfortunately, by going to there for assistance I was eventually offered some strong, abrasive, and hurtful opinions.

After Rae's initial visit with Dr. H. I updated my friend on our decision to hold off on the MRI and the doctors diagnosis of Hypotonia. My friend was appalled and couldn't understand why we would postpone the MRI which could help us learn, "what was wrong with Rae!" My friend railed against our decision for well over five minutes throwing out statements like, "maybe she could be given steroids;" "putting her under isn't a big deal they (the hospital) do it everyday;" and implying we weren't making good parenting decisions because it wasn't what they would do. The tone of voice was accusatory, abrasive, and critical of our decision as Rae's parents.

So, now let's discuss the "good intentions" and how they quickly took a turn for the worst kind of intentions.

First, no parent likes to hear the phrase, "What's wrong with him/her?" I hear this and have to stomp down the urge to bare my teeth and attack. Yes, I am new to motherhood. Yes, I am also new to the emotional roller coaster created by having to adjust my definition of what "normal" development means for Rae. Yes, this giant ocean of special needs is intimidating in comparison to my previous life in a tiny "normal" pond. Yes, this makes me more apt to be defensive quicker than some. But ask yourself, if it was you, how would the implication that something is "wrong" with your child make you feel?

Instead of asking a parent "what's wrong," maybe ask them how their child is doing. This offers them the choice of sharing or not sharing something that they may be struggling to come to terms with themselves. Keep in mind that every child develops at different rates. Yes, there are guidelines, but the span of time for a particular skill can be very broad i.e. rolling over should happen between 4 months and the end of 7 months (according to the American Academy of Pediatrics). Since Rae was only five months at the time of her initial visit with the Neurologist we were still within the acceptable/average range of development. Give it time, we don't regret offering her that opportunity.

Second, any time anyone undergoes anesthesia there are risks and side effects. Yes, some of them are  rare, but they still warrant consideration. Since Rae is an infant and unable to lay still for long periods of time she would have to be under anesthesia at a minimum of 45 minutes, depending on the MRI orders. Given the nature of her diagnosis (Hypotonia) the muscles that help control/regulate her breathing may become too relaxed. This creates a new complication and may result in the use of a breathing tube being inserted to regulate her breathing. As her parents, we had to take all of this in consideration and decided to give her a chance to reach her milestones without putting her through what we hoped would be an unnecessary procedures. A quick word of advice, try not to belittle any medical procedure that someone may have to undergo or consider. Any number of things can go wrong and while the benefits may out weigh the associated risks it can still be intimidating to envision your child with tubes and needles attached to their tiny arms or legs.

Thirdly, I have no problem with someone disagreeing with the decisions we make as parents. Everyone parents differently and the choices made by some of my friends/family wouldn't be the ones I would make for my child, but that doesn't, at ANY point, give me the right to bully them. I'm sure there are times some would say I have overstepped my boundaries, it happens, but I try my best to keep some opinions to myself or at least broach the subject in a manner that wouldn't set them immediately on the defensive. Our doctors supported our decision and if they gave us any inkling that the MRI needed be done sooner then we would have followed their professional opinion.

Sometimes it isn't the argument that creates a hostile friendship, it is how the argument is presented. Being bullied over the phone because we made a choice that differed from what my friend believed we should have done has caused irreparable damage to our friendship. I don't feel comfortable sharing intimate details about Rae's condition or our decisions about what course of action is in her best interest. As much as I would like to open up to my friend, especially since Rae has started physical therapy, I just don't trust that another attack won't be launched. I especially don't need to be patted on my head for finally making the "right" decision.

Below are some links about the use of anesthesia for infants undergoing MRI's or surgery:

Live Stong: Side Effects of Anesthesia - More of a layman's approach.
Sedation and Anesthesia Protocol - This one is riddled with medical terminology.
The Society for Pediatric Anesthesia - Q&A - Pretty basic Q&A format.