I forgot to love you.

I forgot to love you, but I never forgot to judge you.
I told you I'd pray for you, but I never sat down to pray with you.
I showed you where the doors to the church were, but I never walked with you through them.
I told you what you were doing wrong, but never showed what was right.
I asked who your parents are, but never told you whose child you were.
I gave you a label, but never really knew your name.
I noticed your habits, but never wanted to know your heart.
and
now
I
am
the
one
who is unloved and lonely and wrong and labeled and unknown
all because I always had time to judge you,
but always forgot to love you.

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.

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.

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.

Almost made it through 2007

This picture was taken exactly 1 year ago.

At the beginning of the year, we would never have known what was in store for us in the coming months. We didn't think that anything about our new babies life would be anything but perfect. And I think back to the time where I felt like I was dead, or dying, or maybe both and it wasn't that long ago.

I guess all this to say that Ella got her pictures taken last week. She was dressed up in this little purple fairy costume that matched her glasses. She was cute and went right into character when she put them on. And it wasn't until we looked at the proofs online yesterday that I realized what those pictures really were: She made it. It is December and she is alive and well. No, the doctors never told me she would die, but when they are saying words like "aspirated pneumonia" and "airway obstruction" my imagination can work on its own. Maybe in the back of my mind I didn't think she could come this far.....or maybe it was that I didn't think I could come this far. But, here we are. And I look forward to spring next year more than ever because what was dead is made new. I feel like 2008 is full of promises and hope for us. Not like every year is because we do control our own destiny in so many ways, but differently because we have learned so much to be grateful for and appreciate a new start.

2008? Bring it on.

Thankful

I didn't think too much about thankfulness this year. Believe me, I am a very thankful person. I have many reasons this year to spend time dwelling on the reasons to be thankful. Thanksgiving was a day where I was on the verge of tears all day. Yes, I am on my period, so I can blame part of it on that. Yes, my brother moved away this week. Yes, i'm sleep deprived. Yes, Ella still has some challenges she's is going through. Yes, my grandma still has cancer. I didn't stop and think or feel. I did not feel like socially I could afford to have an "off day" emotionally. I can't say "Happy thanksgiving. I loved the pumpkin pie." and break down in tears, because that is where I was headed. It is such a tragedy about my emotions and feelings right now. Why can't I just be? Why can't I just let my true colors show? I stand behind my belief that no one really wants to know because it would be too painful for them, too. Nick knows, but we need to keep living at a somewhat level of function, so this does not come up in conversation daily at this point. I am trying to figure out the point when this will all go away. What is the milestone Ella must hit for me to stop crying? What does she need to be eating and in what way? My friend Laura, who has a toddler with Pierre Robin, told me that she and her husband were talking about us and how they remember how hard the first year was. They have come along way since then and would never again want to be in the place where we are at right now. She told me that eventually, I will see a light up ahead. But, I get so scared. I'm so scared she will never be able to eat. I am so scared that she will have a feeding tube for years. I am so scared that she will be worried about all the things that once happened in her early life. I am so scared that she will feel different from other kids. I am so scared that she will look different from other kids and they will let her know. I am so scared that she will have eating disorders. Ok, finally; here come the tears. Let the river flow. I've been thinking alot about birth experiences lately. I had a great one. I actually had 2 great experiences. After Owen was born, people brought us food and came to visit. They wanted to stay a while and hold the baby. They brought gift after gift and gave their time to us so I could heal- physically and mentally. And it worked. But this time, people came with food, but they didn't stay to see it eaten or hold the baby. They brought presents, but did not make eye contact. I've been thinking lately about redoing the postpartum experience. When someone has a traumatic birth experience, they can have a rebirth, where they lay in a tub of warm water with their baby on their chest and relax in a stress-free and worry-free and noise-free environment. A lot of times, that experience will bring in milk for a mother who had none. Most times, both mom and baby feel healing. So, how do I do this with the postpartum? I don't have any desire to have people bringing food and presents. I just want to heal. I look at my mother-of-2 body and feel like i'm looking at a 3 day post partum body. I don't look normal. I actually am in the same shape as I was leaving the hospital 8 months ago. I wonder if something that was supposed to happen stopped. Where in the process did I leave off? Can I ever start over? Pick up where I left off? Or is what I'm asking for divine intervention; not my doing, but His? I should start inviting God more into my day. I think about him alot, but thinking about the dishes doesn't make them clean. Where do I go from here? What is next for me?

Sean left for San Francisco

My brother, Sean, moved to San Francisco today. I am overwhelmed with how much harder it is that I thought. In my life, I’ve been the one doing most of the leaving. I’ve been the one who goes off on an adventure and doesn’t look back at the people I leave behind.
He has been here for so much. He literally hitched a freight train and traveled across the country to be here for Owen’s birth – and he never left! After Hurricane Katrina, he went and gave his hands and time to help wherever he could – twice! But, he came back. Owen has fallen in love with his Uncle Sean and really, so have I. It is so different this time – to have experienced life and grown – and to share that. And then Ella came and Sean was still here. I never saw him cry over the pain she has felt, but I see how he looks at her and how his love for her has grown.
No one knows how hard these months have been for me because I haven’t told anyone, really. But, I think Sean knows. Through the little that was spoken and the lot that was unspoken, he knows. And I feel so torn about my secret leaving and being unknown again.
I watched The Parent Trap starring Lindsay Lohan yesterday and sobbed through that kids movie. I knew I was going to be in trouble today.
As we were hugging good-bye and crying, I told Sean it was time; he needs wide open spaces. And it is true, I just wish I was going with him.

There's no crying in baseball

I have a rule: no crying in front of therapists. I did it once and the therapist looked uncomfortable. It's a hard standard to stick with because I talk about the hardest things in my whole life with them and I flood with emotion. It's a wonder how I can keep all that inside. Even though they strive for professionalism, I think they care about us more than they could say. There are rules in therapyville about not kissing the babies and watching affection. But, they too, love Ella. They want her to thrive and grow and get better any way she can. When we hurt, they hurt and want to hold her close. When we have joy, they want to cover her with kisses. I wonder what would happen progress-wise if therapists were allowed to get "emotionally involved". Not to the point where they would cross boundaries, get in trouble, etc. But, what would happen if we let them do their therapies and didn't have to think about showing too much love? Would the babies heal faster? Grow stronger? Love more people?

Today was one of those days I had to remind myself that we don't cry in front of therapists. But, the tragic part about that is, who else would understand?

"Ella Amazing" - featured in MOPS Newsletter

Ella Grace was a miracle from the beginning. I wasn’t supposed to be able to get pregnant since baby #1 sent my hormones into chaos. My thyroid decided to take some time off and thus, I was an exhausted new Mom. My doctors agreed: getting pregnant again would be a challenge. That was devastating news, but with a two-month old baby and a nap nowhere in sight, I decided to worry about that later.
Later came quickly. As I took another mid-afternoon rest with my baby, Owen, I wondered why I was so tired. The last time I needed a nap every afternoon was…. OH CRAP. I was pregnant again and had a six month old baby. We spent the next hour laughing and crying. This was a miracle, but I would have appreciated a little more of a “spaced-out” miracle.
And so became another unorthodox journey for us. Nick and I always did things that people talked about. We were engaged for only three months before we tied the knot – not because I was pregnant, but believe in condensing time frames. We moved to California with no jobs and nowhere to live. We quit our stable jobs to start a business and moved to Indiana all while being 8 months pregnant. And just when people started to think we were boring, we were joining the “two under two” club. Actually, forget that, we were in the “two under 16 months” club and my membership package did not include the spa treatment.
My first and second ultrasounds were too early to get a clear due date. But, one thing was certain: this baby was hanging out a little too low in my uterus. My midwife wanted me to be prepared for bleeding. Bleeding? There was a good chance that my body couldn’t “maintain” the pregnancy. And so, we just went on as if all was well. And it was.
When Ella made her grand entrance on February 22 of this year, she wasted no time. Seventy-five minutes after my water broke she was here with a full head of dark hair and olive. She was prettier than I ever imagined. Still, I felt like something was wrong. She had 10 fingers and 10 toes, but she cried a lot and would not breastfeed. Isn’t it funny how a mother always knows?
“Your baby has something called a cleft palate.” A what? I had heard of a cleft lip, which she obviously did not have, but what was this? “She also has something called Pierre Robin Sequence.” Within a few hours, we met with an Occupational Therapist who would be helping us feed Ella, a Respiratory Therapist who trained us on how to use an Apnea Monitor and signed us up for CPR classes. I heard nothing.
A cleft palate is a hole in the roof of the mouth. Ella’s cleft is in her soft palate, which is about as high and far back as you can reach with your tongue. Pierre Robin Sequence is a series of “birth defects” that include a cleft palate, small jaw, small chin and a tongue that falls back and blocks the airways. I decided I should find this “Pierre” guy and kick his you-know-what.
And so our journey began with therapists, feeding tubes, blocked airways, swallow studies, surgeons and fear. There was no hope in our home. This was not what we bargained for or planned. If we weren’t crying, we were fighting. And when the fighting stopped, the pain was deafening. We weren’t sleeping or eating well. We felt horrible. Each week we received more bad news. “She could be deaf. She will be blind. She will be developmentally delayed. “ It was too much.
We received some bad news about Ella’s eyes from a Pediatric Ophthalmologist when she was three months old. The optic nerve in her right eye stopped developing before birth. Optic Nerve Hypoplasia, he called it. Ok, we said. What do we do? Therapy? Glasses? Patching? Medicine? Surgery? Whatever it is, we will do it; let’s make this nerve grow! What we did not understand was this something that couldn’t be changed. The developing had to be done before those beautiful blue eyes left the womb. There was no humanly possible way that Ella could see out of that eye. Our baby was legally blind.
And as we walked to the car, my husband sobbing and carrying our sweet baby who had already gone through so much, I couldn’t help but feel peace. I remember thinking weeks ago: God is going to heal her eyes. At the time, I didn’t know there was anything to heal. What is humanly impossible to man, well, felt like a big fat challenge to God. I was scared of believing he could to this, but what was the alternative? Blindness? Never being able to read? Never learning to drive? Never getting to see how beautiful the flowers are in the early spring and how rich the leaves are in late September? Would Ella never see the beauty of her own eyes or recognize my face? And so, I chose to believe. I spent the next two weeks praying and reading stories of ALL of her “defects” being healed. Anytime we held her, we prayed. Anytime she slept, we prayed. I finally started to believe that God could do this, even though the world was screaming, “HE CAN’T.”
I recently read that we shrink the size of God to the size of our biggest problem. That doesn’t allow much room for the impossible, does it? But, He is so gracious and allows some room for our own faith to be lacking and to grow. He never disappoints, never breaks a promise and never leaves us to sit alone in our pain.
And so we asked for help. We had our friends come over to pray over this sweet baby who had already gone through so much. The crowd agreed that God was performing a miracle and the final word would be the doctor’s confirmation.
About a month later, we headed off to the doctor again. He couldn’t believe what he saw. “I must have made a mistake.” We knew it was no mistake. “I don’t understand this, but if her nerve has grown this much already, it might just keep on growing. I think she will be fine.” (We got a second opinion and the second doctor confirmed.) There was so much freedom in those words.
We decided it was time to slow down and get to know our new life and new daughter. And so we took July off from doctors and surgeons and swallow studies. We started to bond with her as a child, not as a tragedy. How fast our love grew! At 5 months, she finally started to smile and laugh. And each time she did, we cried with joy.
We spent the rest of the summer enjoying our life. Ella began to open our eyes to all that was worth living for in our world. Have you noticed the wind lately? It’s the same wind that has been around since we were kids, but have you stood outside and not worried about the state of your hair and let the wind blow across your cheeks? I hadn’t noticed it for years, but Ella did. She shuts her eyes and leans back her head and sighs – every time. And did you know there was sand at the beach? For so many years I was only worried about my tan and sucking in my stomach, but Ella showed me there was sand. And if you close your eyes, you can rub your feet across hot sand and you may even be tricked into thinking you are getting a foot massage! She has showed me how to “just be.” How I long to lie in bed and just relax and not think of all the things I’m not doing, but to just be here now. I love to watch her lying in her bed, just rolling around and smiling. She doesn’t worry about tomorrow, or the rest of today, she just is happy being Ella Grace, cutest baby of all time.
And that is not the whole story. Her first two weeks of life were spent in the Critical Care Unit in the NICU on IV fluids and an NG feeding tube. She failed six hearing tests, only to pass at seven months, finally. She has Torticollis and Strabismus, both which she receives treatment for. She has therapy three times per week, monthly swallow studies, x-rays, two surgeries down and one to go. She wears tiny purple glasses and eats from a tube in her belly. But, those things don’t define her anymore. She is a spunky, sixteen pound, brown-haired, blue-eyed beauty with a spirit that will make you smile. She has kicked every prognosis she was ever given in the rear end! We are so blessed that time, therapy and surgery should take care of all of her problems.
As for me, I have seen the person I truly am through this experience. I am not just an overtired, overweight, emotional wreck of a person. I am strong – strong enough to stand up to the most famous of doctors, strong enough to ask for help, strong enough to tube feed a baby every three hours around the clock, strong enough to be weak sometimes.
I think as wives and moms, we despise that dumb Proverbs 31 woman because she is everything we are not. She always looks good and always makes dinner and always makes her husband proud. A day of wearing sweats, frozen pizza and a messy house isn’t what we would consider an accomplishment! That woman is so misunderstood! When the scripture says, “She rises when it is still night,” it is not saying “She gets up at 4:30 a.m. to work out and make sandwiches for her family and put on lipstick.” The message there is that even when things were hard and life was dark and sad, she kept going. She didn’t quit on life or herself. She did what she didn’t always feel like doing because it was what needed to be done. She is strong. You are strong. I am strong. Ella is strong. God can use our weak times and our tragedies and turn them into stepping stones to the rest of our lives.
I received an email recently from my sister-in-law about Ella. She let me know that during the latest surgery, they had been praying. She continued to let me know that their daughter Lucy couldn’t wait to meet Ella and had renamed her “Ella Amazing.”
Tears poured from my eyes as I read those words. People always say I am lucky that to have such a happy baby in these circumstances. It was not luck. Ella has experienced the worst – being poked, examined, discouraged, stared at and scared– and now she knows what is the best. She is grateful for sunny days and gusts of wind and teething biscuits and warm baths. She loves the softness of her big brother’s hair and the warmth of her daddy’s shoulder. Ella loves life and has taught us to love it too. She truly is “Ella Amazing” and I am so grateful for her.