Sometimes, It's the Little, Symbolic Things That Set You Off...

I've been feeling pretty overwhelmed this week and had gotten a bit discouraged, so this post is mostly to get some things off my chest. Kieran has his next cardiology apt next week, and after what we were told at the last one, I'm already feeling more anxiety than my typical pre-Children's-Hospital-visit level. Even to the point that I'm dodging social engagements for several days post-appointment, because I fear if the apt doesn't go well or we hear more bad news, I won't feel like meeting with friends and having to pretend everything is ok. I also had my brother's wedding this week, which was truly lovely...but going to an extended family event usually takes a lot out of me. Combined with dealing with some feeding and bedtime issues, and the customary physical and occupational therapy, and some other (non-parenting) "issues" to deal with outside of the homesphere, my resolve started getting a little shaky.

Let's put it this way, in travelspeak: Let's say you're living abroad, and everything seems to be going just fine. You're starting to understand the language. You feel accepted; your neighbors and host family like you, you play some soccer with the neighborhood kids, you can bargain for a few limes at the corner market.

Then, you get invited to a friend of a friend's wedding. You dress up, you arrive ready to take part in the festivities...and no one talks to you. You try to get into a few conversations, but no one seems interested. People cluster with their backs to you, and you feel ignored or at least forgotten. You just feel so...different. You wonder, "why am I not fitting in? why can't I be accepted?" Now, maybe some gregarious, magnetic individuals can overcome this and manage to have a great time despite the "outsider" vibe. But in these situations, I often find myself feeling frustrated and deficient, wondering how people at the event see me, feeling all my insecurities about being there surface, and questioning my ability to really be accepted in a place you would really like to be a part of.

Of course, it's a minor setback or unfortunate situation, and not worth getting upset over. However, when you already feel different or vulnerable, something that should be insignificant gets blown out of proportion. This is how I've been feeling the past couple weeks in some of my attempts to introduce Kieran to other children (which he loves) and get to know other parents.

The thing is, I never realized before having Kieran just how much being born with a medical condition can affect so many areas of a baby's development. How interconnected things are at that early, important stage. Simply, the surgeries and recovery periods require a relatively large span of a baby's new life to be spent lying in bed. It's not as simple as just catching up, because certain weaknesses and habits often develop in association, such as favoring turning the head to one side (say, towards a window or visitor's chair), or keeping the arms close to the body to protect the incision area. Of course, they're too young to be told, "honey, you really need to extend your arms," or "honey, bringing your hands up to your mouth is a very important skill to learn." The feeding issues that arise from heart defects and heart surgeries can cause babies to be small or lag behind in eating, which in turn causes speech development to lag...lags in sitting might cause speech delays due to posture issues...and the list goes on and on. Lack of energy/easy tiring causes many babies with HLHS to take things slow. Coping and compensation mechanisms then kick in, and are very hard to break, making "developmental normalcy" even more challenging.

I don't like the term "behind" as it is applied to children, because "behind" implies that there was an equal starting line in the first place. Not so. What I want to tell people is that kids with serious medical conditions might be proceeding at a pace that outstrides that of a "normal child--" it's just that they began "the race" waaaay back at a different starting line. Not only that, they haven't been just clipping along at a full sprint. They've had hurdles to overcome. They're doing entire obstacle courses while someone else might be doing laps. "Behind" implies a deficiency on the part of the child, as if the child can't "get it."

So. I have to say that for the most part, people have been so accepting, positive, and even downright excited about Kieran. That's why this stupid library storytime shouldn't get me so much...but it did. He *loves* being around other kids. It doesn't matter that they all outmatch him in crawling and walking. It doesn't matter that they knock him down and grab the toys out of his hands. It doesn't matter to him that he sat there while they were all cavorting around. He had a great time. I did not--no one would talk to me. I felt like an outsider, like we were freaks...I kept trying to make conversation and no one was interested. On top of that, people kept confusing Kieran with "Karen" and calling him "she" even after I corrected them.

That was week 1. I thought, "well, surely week 2 will be different." Nope. The same people from the previous week were calling him "Karen" and "she" even though he was dressed in boy clothes. It was so strange. And none of the parents would interact with him or talk to me. It made me so incredibly paranoid and insecure. What were they thinking? Yes, he is thin. Yes, his skin is a little blue. Yes, that is a scar peeking above his shirt. No, he doesn't crawl or walk yet. No, I'm not a nutcase who dresses her girl in boy clothes.

I just felt like such an outcast...and again, who cares? Maybe it is all nothing. Maybe it was nothing personal. Maybe it's just a bad group. Maybe it's my own tentative nature when it comes to making new acquaintances. But...combined with everything earlier in the week, the episodes played on my own doubts and caused some internal frustration.

BUT, then...Kieran started crawling this week!!!!!!! And today, he started pulling up on furniture, all on his own!!!!!! Every single time anyone starts to question Kieran's progress, he blows us all away. Like the speech therapist who came to do her evaluation on his eating skills said, "People always fail to take into account the incredible spirit of these children." Kids who overcome obstacles cannot be reduced to odds, percentiles, statistics, or probabilities...because spirit and will cannot be numerically defined or factored into the formal equation.

So, confidence restored and desire to press on renewed. All along, I've been referring to the HLHS journey as taking place in a remote and less-traveled country, which implies a foreign nation. Now I realize this foreign country is actually my home. It's as if I grew up a stranger in a strange land and am just now seeing, as an adult, my native land. I suddenly learned this week that the realm of "the norm" is the foreign country and always has been. What I often find myself traveling through--everyday life--is the strange place.