'Can Do' Attitude

I've been thinking lately about developmental delays, mainly what parents of *typical* kids might wonder it's like for us SNPs who have delayed children.

For years I've heard moms talk about the comparisons other moms make between their kids and the questions they get asked like: "Is she sitting up yet?" "Does he crawl?" For some reason those are seemingly appropriate questions to ask another mom for some. Most of the moms I know who've relayed these experiences to me have taken offense to such comments, like their child is being judged, and that the asking mom seems to get some kind of satisfaction out of the fact that her child may be more advanced.

I get asked these questions too - mostly by people that may not see or know Ella personally - and I know they aren't asking in order to compare my child with theirs. I think people are simply curious about Ella's progress based on her circumstance, and that's okay.

Do I wish Ella could sit up by herself at nearly age three? Yes. Would it be nice if she could actually move herself around like she so desperately seems to want to? Of course. But I'm not upset about it. I gave up comparing Ella to typical kids and developmental charts a long time ago. But it was a process.

In the beginning you have hope. Sure the doctors will tell you that she will be severely delayed, but what do they know? Do they have a crystal ball? You still believe that your child might be the exception. All infants don't do much so it doesn't seem any different at first.

But as time goes by and those first milestones aren't reached, reality begins to set in. And as even more time passes, the gap continues to widen more and more. But in my mind Ella can't be compared to any other child, delayed or not. She is unique. She has had her own journey filled with numerous medical issues and hospital stays. She's Ella, and we're living on Ella-time. I just try and focus on what Ella IS and what she CAN DO and what makes her extra special.

Now that doesn't mean that we just give up trying. Quite the contrary. Ella has a rigorous therapy schedule that includes PT, OT and Speech each twice a week (when she's not in the hospital). I will give her every opportunity to excel where she can but that's really all I can do.

So I'm not embarassed about where she is developmentally but what IS uncomfortable are the looks of pity when other people notice how delayed she is. They assume I'm upset about it and that's what makes me feel bad. I don't expect Ella to be like other children, I just expect her to be Ella.

Sunrise

It isn't often that I'm up early enough to see the sun rise. And if I am, I'm certainly not paying attention to it. But this morning I did.

Ella woke up early and with my husband out of town and no nursing, I had to get up with her. After getting her settled I stepped out to the back patio to sip my day old coffee that had been reheated in the microwave and noticed the sun rising. It got me thinking.

A sunrise doesn't quite hold the same romanticism as a sunset. You always hear about watching the sun set. A sunrise doesn't seem to get the same credit.

Lots of people witness the sun rise every day, and in theory it's the same beautiful occurrence, but we don't typically take the time to stop and enjoy it in the same way. Everyone is busy rushing off to work or school or wherever they need to be.

On our honeymoon my husband and I went to Key West. Anyone who has been before knows what a big deal "sunset" is there. We were told of a great location we had to go to see the sunset, on top of a hotel, so at the end of our first day there we made a plan to go. We didn't allow ourselves enough time and I remember us running through the streets trying to get there but when we arrived at the top of the hotel, it was pretty much over.

The parallel to our life is obvious to me. Having a typical child is like a sunset - it's romantic; more people notice and appreciate it. Our first pregnancy, before Ella, ended halfway through and, like our experience in Key West, we got a glimpse of the sunset but missed the big show that everyone else experienced.

Instead, we got a sunrise with the arrival of Ella. It's different. Not as many people rush to see it or appreciate it, but it's ultimately just as beautiful.

Where do we go from here?

***Warning: This post deals with the difficult subject of death.

I've been thinking about this post for several days now. Those of you who know us personally are aware of what has transpired with Ella's health during the last few weeks. For those who don't, to sum it up, we almost lost her on January 19th. As I write this we are still in the hospital but planning a discharge next week: we've been given a second chance.

When you're the parent of a medically fragile child, it's understood that they're mostly living on borrowed time. You never now how much longer you have left and the reality is that you will likely outlive your child...not something any parent wants to think about.

As the realness of what happened has started to set in following the fog of shock and disbelief I lived in for the first week or two, there are so many emotions running through me - gratitude, relief, sadness, and fear to name a few. The rollercoaster is moving so quickly now that I am constantly nauseous. How do I make it slow down?

I imagine it's just going to take some time, but I don't see how we can go back to normal. Things look so differently now.

It's always been in the back of my mind the very real possibility we will outlast her, but I've tried REALLY hard to not think about it too deeply. It's always been "down the road". I was not prepared for coming so close to losing her at such a young age or having to let my mind really explore the possibility...What would her funeral look like? What songs would we play? What pictures would we show? Where would she be buried?

Have I been too nieve thinking we had so much more time? Should I be preparing more both mentally and physically?

I want to give myself enough time to heal, but I don't want to dwell in it either. I think it's going to be a fine line. When I was pleading with God for more time with Ella, I promised Him that I would take whatever it was He wanted me to from this situation and use it in a positive way. So now I'm trying to figure out what that is. The sooner I do, the sooner I can start moving forward.

One of the moms in my online special needs parents group put it this way - our children are on loan to us from God until He needs them back. I guess all any of us can really do is love them as much as possible while they are here. I'm just not sure how I could love her any MORE than I already did.

Battle Scars

We have fought many battles since Ella Grace was born with the numerous illnesses, procedures and surgeries she's had. Her scars are obvious: the hole in her stomach that holds her feeding tube; the one in her neck that holds her trach; the marks on her jaw and tummy from past surgeries; and the frequent bruises and scarred tissue on her tiny arms from countless IV attempts.

Her little body has endured more before the age of three than most people will endure in a lifetime. But she is resilient. She bounces back and likely won't remember the things she has been through for which I am grateful.

As parents, though, we don't fare quite as well.

There is nothing that tears at your heart more than seeing your child suffer. The scars we have from these experiences lie much deeper than the skin. They are burned into our memories and tatooed across our hearts. So how do you cope?

Human beings in general are resilient creatures. We have been programmed with coping mechanisms to get us through tough circumstances. You've seen those amazing stories of survival on TV or maybe played out in a movie where people switch on some seemingly superhuman senses to get through a horrible situation. Well, it's not much different from what happens to us.

People want to know how I handle it all - Ella being sick and in the hospital all the time - and the truth is, not very well! At least not physically. The effects of the constant stress are very apparent to me when I look in the mirror. But we try and take it all in stride and move past each battle after it has ended, even though we know the next one is likely just around corner.

It's just like with anything else, the more you do it the easier it gets. The first time your child has surgery it's horrifying. But by the 7th or 8th time, not that I take it lightly, it becomes more routine. It's our normal. We get used to it, and that helps us to cope.

And I'm glad our scars aren't visible to the eye because I would never want Ella to see them.