What's in an name?

A lot! At least, that's how it feels today.

Lainie said her name. After 8 months, she can say her own name again. She was saying it for about a month before the seizures. Every night we'd pass her picture on the stairs and she'd say 'Lainie' clear a can be. Then after the seizures, she'd just say "eh."

For at least four months (if not all 8), I've been working with her, getting her to say Lay, then Nee and trying to get the sounds put together. Months of effort and (honestly) disappointment. I wanted my little girl to be able to say her own name, her first name.

And now she can!

Ironically, with all the down feelings of last week, I was also feeling really tired of working with her on her speech. And then I thought she's probably tired of being asked, "can you say ____?" And so I decided Saturday I wouldn't pester her at all or work with her or make her say the words or sign when she wanted something. It was going to be a day off for us both. But then, I still heard myself saying, out of habit, "use your words!" And I saw Lainie using her signs without any encouragement.

And the day after our day off, I heard her beautiful name! It's one of the best sounds in the world.

Where There is Hope...

I feel like I'm going into that dark area again, where my thoughts are dark and my day dreams are nightmares of every bad scenario imaginable. I know why, and I debated posting this, because it turns other peoples suffering into all-about-me. But, darnit, this is my blog, my therapy, and nobody's probably reading it anyway! So...

On Sept 2 my cousin delivered a little girl at 29 weeks gestation. She is named Hope. In addition to being premature, Hope has a rare birth defect that caused only 25 percent of her brain to form. She is able to breath, suck, look around. But she has a life expectancy of 6-12 months.

On Sept 3, a friend delivered a little girl at 28 weeks gestation. Her name is Ellie. She is doing well, but every day comes with the struggle of breathing and eating, digesting and pumping that little heart.

And these are just the two babies struggling right now. Two of thousands going through similar struggles, I am sure, but two that I know. Add to that list the babies born to friends/family in the past two years who have had fatal heart defects, abdominal wall not formed and organs outside the body, born at 26 weeks gestation, and a mitochondrial-related disease that prevented brain growth. Add to that Lainie's scare last January.

All that is background to say I'm scared, nervous, worried, prepared and maybe expecting the worst with this pregnancy. I have had this feeling from the get-go that something what not right. We made it through the first ultrasound, and baby had a heartbeat. We made it through 3 1/2 months of cramping with no spotting, and I'm still pregnant. I'm dealing with the sharp pains I get routinely now, hoping they are just strategically placed kicks. But, man, I'm dreading that ultrasound on October 8. I'm dreading it, but I need it. I need to see on that screen a fully developed brain, closed abdominal wall, thumb-sucking, 4-chamber heart, and everything else as it should be. I do not need nor want to see if it's a boy or girl -- that SO doesn't matter to me.

And I know that even if everything is okay now, it could still turn sour and there is nothing I can do about it. It's out of my control. I even considered calling Doc today and begging for an earlier ultrasound, but if something is wrong, what good is it going to do to find out now instead of 3 weeks from now? What would that change?

A friend of mine once said they were done after their son was born because she was so scared that they wouldn't be as lucky as to have a perfectly healthy baby if they tried again. She said it'd be selfish to ask God for another miracle. I didn't understand that rationale, then, but I sure do now. This is our last, for so many reasons, but also because I am too too aware of everything that can go wrong and too aware of how fragile and how lucky I am to have three beautiful healthy daughters. I'm just hoping and praying for a beautiful healthy little baby...just one more.

The big question

You know, perspective is a might thing.

In the past month, one cousin lost his wife in a car accident. Another cousin has welcomed her new daughter, born at 29 weeks, only to find out she has a terrible birth defect that results in a life expectacy of 6-12 months. A friend is also spending her days at the NICU with her daughter, born at 28 weeks, coping with all the daily struggle that entails. And a coworker just lost his dad to cancer.

Sometimes it gets so hard to understand it all. It also seems easier when it's happening to you, because you don't have time to think about "why me?" or "why is this happening?" You only have time to get up, to face the new day and whatever challenges come with that day. You barely have time to think of the what-ifs, and you push the what-ifs to the back to conserve your energy for that day.

But when it's happening to someone else near you, you have the time to think about the whys. Why did this happen to them? Why did this happen at all? What's going to happen long-term? What can I do to help?

Another friend (sorry for the ambiguity) attended a funeral recently of a former student, who committed suicide. At the funeral, the minister said we are all sitting around here asking why...why did God let this happen. And he said that maybe, sometimes, we are like a impetutious toddler asking a parent why why why. And eventually the parent responds with "Because I said so." And maybe that's God's only answer for us.

But my friend took that a step further, because her usually answer to her son is just "because." And sometimes that's all we need. Sometimes the answer is too big for us to understand or too complicated or too painful to try to explain. Sometimes we just have to settle with "because."

Turning a little selfish, last fall this time I couldn't walk upright. My arms were too weak to type, much less hold my daughters. I couldn't complete a sentence without stumbling over the most simple words. I couldn't see clearly, and I had constant ringing in my ears. I felt I was slowly disintegrating. And I spent a lot of time asking why. Now, a year later, we still don't know why I was shutting down. But I know that I'm better now, that it all seems just a memory, and that I am changed for the better.

I hope and pray that all those going through suffering right now, especially those near and dear to me, can look back in a year, think of these tragic times as just a memory, and be happy with the progress made. And find peace, even without knowing why.