Tuesday, January 29, 2008

Make 'em tough

Owen is a child that is so ahead of his time. He could feed a baby through a feeding tube at age 2. He knows his city and state he lives in and also which state he was "made" in. His favorite song is about the caste system in India. He draws pictures of Desmond Tutu and Yo Yo Ma. We think he is truly incredible.

Today he is using a small cloth tape measure and measuring everything he needs to know an instant size on. We go through this every few weeks when Ella is measured by her nutritionist to keep a good tab on her size. But, the thing is small and it gets lost often so for a while we do not know the status on many a thing.

But, those big blue eyes spotted the tape measure under the couch today and found it. "I measure everything." And away he goes.

Ella was the first to be measured. "How big is she, Owen?" Nick asked. "Big," said Owen, "and tough."

And me, I wondered. Owen put the measuring tape up to my leg and immediately he knew: I was tough too.

How much does he know? How much has he heard? I immediately began thinking about how smart and observant and curious he was and questioned his innocence, as I often do.

But, this wasn't about that.

Within minutes, all 4 of us were officially put to the test and we all had the same height: tough.
We couldn't have planned him better if we would have picked him out ourself. Owen renews our hope for today and reminds us that in the weakness that seems to overwhelm, I am, we are, incredibly and undeniably tough.

Sleeping baby

I have a sleeping baby in my bed right now. She has never slept till noon in her life! I keep going in checking on her to make sure she is breathing and to make sure she didn't crawl away to go play with toys when I wasn't looking.

I just went and checked again. Breathing? Check. Still in bed asleep? Check.

Last night we were traveling late and out of town when we pulled into Meijer to stop and buy some diapers. Ella started crying and within a few minutes was nearly hysterical. As Nick got her out of the car, he found her projectile vomiting in her seat - all 5 ounces that she had just eaten. It was disgusting and stressful and within a minute, I was flooded with more emotion than my body could handle.

We had to do this awkward naked baby clean-up in a dirty men's bathroom with hand dryers and wads of toilet paper. By the time she was clean and naked, she was back to her cheery good-natured self. But, not so much me.

I didn't cry during this fiasco. I have learned this very unhealthy method of dealing with the fear and pain I feel whenever we have an Ella episode: it's called "not feeling." How profound.

I don't know what to do with all that is before me some days. As of late, she can throw up between 1-5 times a day. I've been saying it's because she has had a cold for the last two months and a hole in her mouth and that together, it's hard to keep things down. (which is true). But, a small part of me is scared that something else is wrong and that it would be too much for my overflowing plate to worry and explore something else.

Each time she loses all that she just ate, I count calories. We are at such a critical point with her weight where she is too small for the doctors to be comfortable with and every drop matters. She threw up 154 calories last night in the Meijer parking lot. That is 154 calories that sets us back and puts the question of her surgery and general health back on the table. Those are not questions we can be having anymore.

And so, I let me dear baby sleep like a teenager today. I walk around with all this feeling wanting so bad to explode out of me and let me be free, but then who would take care of my children? Who would take care of me? She must be exhausted. I sometimes forget how it must make my sweet Ella feel to go through all these things herself. How I wish God would take all the pain we all feel away.

Until then, sleep, baby, sleep.

Sunday, January 20, 2008

All things made new

It is half way through January of 2008. I was so looking forward to getting out of 2007 to have a fresh start. I should have known that it was not the official start of a new year which made things new, but what I would change to make things new. There are many things with Ella that are not totally taken care of yet. Compared to deafness and blindness, they are nothing. But, they are where we are and have become magnified and huge and I spend much of my day thinking of her tilt and food coming out of her nose and the cold that she has had for 2 months. It's funny how that when problems come and go and when they go...a new one comes in to fill in the space the other one left. Even if it is not as big as the last one, it doesn't matter because it is what is present and feels real today.
We scheduled Ella's surgery - the surgery we have been waiting for since she was a day old and found out about the gaping hole within her mouth. At the time, there was nothing more devestating than that space in her body that needed to be filled. But, it soon had competition with her hearing and her vision and her eating and the cleft in her palate, became an incidental in our life. Still, it must be fixed in order for her to talk right and eat comfortably and laugh hysterically without reservation. And so on February 25, the hole will be closed. The surgery will last between 2 and 3 hours and when she comes out, with stitches and all, her mouth will be as it was always supposed to be.

Ella's physical therapist, Miriam, asked what this would mean for us. She thinks Ella is amazing and right on track with everything she should be doing. So, what does the surgery make different? First of all, she will learn to talk and make sounds that currently can't be made because she can't create pressure in her mouth. Second of all, she will be able to eat confidently and food will no longer come out of her nose when she tries to move it from the front of her mouth to the back. She will be able to make suction and suck from a bottle or a straw and actually get something out! She will swallow and begin to truly enjoy food. Lastly, it is a sign of so much for our future.

At first we thought this horrible diagnosis of Pierre Robin Sequence was going to destroy our life - seriously. But, like many ignorant people have said, "If you are going to have a birth defect, this is the one to have." Oh yea? Obviously they have never had a child, let alone a child that didn't come out exactly as expected. We are very fortunate that most, if not all, of the issues we are dealing with today will not be around tomorrow.

Ella's palate will be totally healed within a week. Our surgeon said it is one of the most amazing things to watch a child's mouth heal, after all they have been through, so quickly and to see how their recovery is much faster than that of an adult. It's a true testimony of how your past is not your future. How what was yesterday is not today. How all things, in time, are made new.

Wednesday, January 9, 2008

To make a child...

Me and my most loyal friend.
My sweet Owen asked me yesterday, "Why does Ella have no mouth?" No mouth? I remembered him saying something to this effect in the past few weeks, but I didn't understand. "Ella have no mouth. Eat baba in feeding tube." My initial response was to laugh: How funny to think she has no mouth! I realized what an abnormal situation we have and how most kids don't grow up wondering if their siblings have mouths. "Owen, Ella DOES have a mouth. But, when she was a baby she wasn't strong enough to eat like you, so we had to get her a tube so she could get big and strong. Then we went to the doctor and she got a g-tube put into her belly."

"I remember that."
"Remember what," I asked.
"I remember when Ella got a g-tube in her belly. Go to hospital. Ella get ouchy."

Oh, how I started to cry when I saw how sad he was. I didn't want him to know that she was in pain or that we were/are in pain. I wanted him to think that everything was OK and normal and that this is how everyone's life is. I wanted him to not be sad. I worry so much about how they will feel as they are older. Will Owen feel weird in school because his childhood is so different? Will Ella ever tell anyone that at one point there was a whole in her mouth so big that she could push food right out of her nose? Will the kids laugh? Will she be too strange to be their friend? Will they love the people that no one else will? Will they see past the skin and see into the heart? Will they have eyes that look like Jesus?

When I was younger, I remember feeling such a pull to the people who needed love and who were different, but wanted so desperately to be accepted and popular. Oh, how I've wasted so much of my life trying to be both. I couldn't be both.

Owen got a Veggie Tales video for Christmas. Bob & Larry read answered a question from a little girl that said "I want to be friends with someone and know God wants me to be friends with them to, but they are different from me and I know I will lose my friends if I am friends with them. What should I do?" They told the girl, who is way ahead of her time, that if she trusted God that she should make the new friend and God would bring her new friends (that would of course be better) than the old friends. God would be happy. She would be happier, too.

As a parent, I am torn between making my kid feel comfortable and loved at school, as opposed to having a harder time in school because they don't want to conform. But, none of those people I tried to impress stood up next to me at my wedding, or at Ella's bedside as we tried to figure out what to do. None of those people said they would pray diligently for my Grandma when we found out she was sick. And so, I guess I know what I pray for. I pray for children who love Jesus more than popularity. I pray for children who see hurting hearts. I pray for children who see beauty in the differences they come across. I pray for children who trust that God will take care of them as they take care of others. I pray for children who have as good of friends as I do.