Wishful Thinking

Today I had to run some errands. Nothing major, but I wanted to get some supplies to make a sensory box for Rae (popcorn and a rubbermaid box). There must have been a crazy high demand for popcorn at Target because the shelf was empty. So, I had to swing by Wal-Mart and while driving from one store to another Rae fell asleep. This has happened before and in an effort to keep her asleep I pad the buggy with a cart cover, blanket, and travel neck pillow. So, in Rae's usual laid back fashion, she "shopped" comfortably with her feet dangling over the edge of our buggy.

Shopping in Style

Well, while meandering through the giant aisles filled with Christmas goodies, I noticed a young woman coming towards us with a little girl about Rae's age (maybe a slight bit older) sitting up in the bottom portion of her buggy. As the distance between us decreased I found myself thinking, "I wish I could sit Rae in my cart like that." Of course this thought is something I keep to myself, but there are occasions I find myself wishing Rae was physically able to do what other "normal" children are able to do. While we passed each other in the aisle I over heard the young woman tell her shopping companion that she, "wished ______ (insert girl's name) would lay in the cart like that."

I shuddered and spoke under my breath, "Be careful what you wish for."

You never know what you will actually get when you wish for something. If that young woman knew about Rae's condition and the struggles that come from it, she may have thought twice about thinking she'd rather her young daughter contently lay in a buggy. But, she didn't and from her perspective she might have thought having a child that was so content to just rest peacefully in a buggy while she shopped would be ideal.  For me it is the exact opposite. When I hear other mothers exclaim how they now have to chase their children around the house or baby proof everything because Baby Jane/John won't stay in one place my heart swells with envy. I long the opportunity to chase Rae around the house, but for now she is content to lay peacefully in one place.

So, no matter what is going on try to remember...be careful what you wish for because outward appearances aren't always as ideal as they may seem.

Expectations

From time to time when my husband and I get into a disagreement (read: argument) I find myself asking him to specify what his expectations are of me. I feel that I am not able to meet expectations when I have no clue what they are. Seems logical...right? Well, his simple reply is always the same, "I don't have any expectations." That's when I call B.S.! We all have expectations. I, foolishly, even have expectations of complete strangers, which are often met with my being disappointed, but that's another story.

Recently, I find myself having to readjust my stance on expectations. I can not have any expectations of our daughter...at least physically speaking. All those lovely, insightful, books that instruct parents as to the "normal" development of their child is reduced to kindling for my burn barrel in the backyard. Since Rae has been diagnosed with Hypotonia, I have found that any expectations I daydreamed about while pregnant have become just that...dreams.

Rae is now 13 months old and if I can get her to roll over on her own ONCE during the course of a day then I feel like we have accomplished something. My heart melts if she places her tiny hand into mine when she wants to be picked up because that is quite the feat in our home. The simple achievement of drinking an entire 3 ounces from a regular bottle in one sitting is cause for celebration, which I do whole heartedly of course. Every minute, almost undetectable movement can be and often is considered progress in our eyes.

On occasion, I find myself daydreaming about when she'll stand or maybe, dare I hope, take her first step, but those dreams are masked in a fog of mystery because I can't have any preconceived notions of when to expect her to meet those milestones. When Reality body checks me (which it gladly does on a regular basis), I curl up inside myself, silently crying, hoping someone may hold the key or at least offer an answer as to WHY this has happened to our little Engel (No, that isn't spelled incorrectly, it's German). Then I pick myself back up, brush away the fear of the unknown, re-calibrate my thoughts, and move forward.

So, do I still have expectations...absolutely! I expect to have more blood work, more tests, more x-rays, more doctor appointments, more medical bills, more therapy, more smiles, more laughter, and most importantly more PROGRESS! Because even though her milestones are much smaller she is still making them...one roll at a time.

Oh, and I still have those pesky expectations of my husband, even if he claims to have none of his own for me. Round 32...ding, ding!!

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.