I was looking for something online - very much not this, but found this. I don't think of Ella as being handicapped by any means, but this very much touched my heart. Share it with someone who wonders "why?"

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

A praying people

Yesterday was the first day of Ella's new therapy. We don't really have a lot of time for another time commitment on a Thursday afternoon, but then again, we can't afford not to have this one, either. About a month ago I was reading a pamphlet from the new yoga center down town. They were advertising all the programs available for kids - including "baby yoga," which my mom was taking Owen & Ella to the following week. I flipped the page over and saw an ad for therapeutic yoga for kids with feeding problems and emotional issues. This woman does gentle massage and stretching and cranial sacral therapy in a fun laid back way, while helping the child along the way. I was so happy and felt so strongly that this is what we were to do that I cried. I really did. And then I looked at the price tag: $90/hour - and I cried even more. It is the kind of thing that if it worked, we could put no price tag on what Ella would gain, but still, it was $90/hour. I was mad and annoyed and sad and still crying when I remembered: $90/hour therapy saved my life (it was a little different kind). I did some investigating and found out that she is a First Steps therapist as well. Hhhhmmm. So, I called my service coordinator, Pam, and within and hour, we had lined up that same therapist to come do therapy at our house, for a fraction of what it had cost. Pam told Stacy, our new therapist, "This mom knows how to work the system. She wants you 4x a month." Done. It was awesome. I felt like super woman for about 2 minutes because I worked the system and got what we needed and was gonna pay hardly anything for it. But by then, we were at Barnes & Noble and I couldn't see either of my kids, but heard books dropping, and super woman put her normal clothes back on and frantically cleaned up a mess.

And so we started our new therapy yesterday. I was running late coming back from vision therapy in St. Joe, Michigan and Nick was supposed to be here doing dishes and sweeping floors, but he was late too. So, 10 minutes before Stacy arrived, we were frantic and I was pacing and pouting and tense. But, I can turn it on real fast, fortunately. She first wanted to demonstrate on me and immediately said "Wow, you're really tense. Stressful day?" I was found out. I can't fool a massage therapist, can I?

Cranial Sacral Therapy is --- well, let me just led Wikipedia do what they do best: A craniosacral therapy session involves the therapist placing their hands on the patient, which they state allows them to tune into what they call the craniosacral system[1]. By gently working with the spine, the skull and its cranial sutures, diaphragms, and fascia, the restrictions of nerve passages are said to be eased, the movement of CSF through the spinal cord can be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.

And so, they lay hands on the patient. And the pressure is very light, almost too light, but after a minute or so, the area that you are touching loosens up and feels different. There is fluid that flows through your spinal cord that is called craniosacral fluid. It often gets blocked up and can be relieved with some gentle pressure and some good intentions. Or, as she said, if you are praying people, you pray for healing in those areas and put everything you've got into it. God does his thing, I do my thing and the fluid will move and relieve some tension in the body. Stacy quickly found that Ella's chest, upper back, ears, mouth, neck, g-tube scar and belly button were all places that needed work. Those are all of the areas she has experienced some trauma.

And although she has improved in so many areas, I know she is still traumatized. Nick carried Ella into the hospital room to see my grandma on Thursday and she started to shake. A moment later when the nurse walked in, she started crying and yelling at her. I didn't believe she had forgot, but I didn't know how much she knew. That is very upsetting to me. Before she was born, I had done some studying of babies with birth trauma and NICU trauma and it did help when we lived in the hospital and I knew some ways to make her feel safe and to make it less traumatic. But, still, I knew. I couldn't help but worry about her emotional health day and night. And we have been doing so many therapies and exercises and praying and we have seen many improvements. But, I have still felt like there was a missing piece: Someone to cater to her emotional needs (and maybe even mine.) Stacy explained how to do the belly button therapy, with some gentle touching and some big prayers. She explained that if Ella is sleeping, she might quickly sit up and scream - not because its painful (it is light touch), but because it does what it is supposed to do: releases the emotions. She repeated to me what I should say to her when that happens. "It is ok. You are safe now. Mommy has you and won't leave you. All that bad stuff is over and you are safe and loved and we will protect you." And I started to cry, as if God was speaking that right to me. And I wanted to hug her and say "Will it really be ok? Is it really all over?" But, instead, I hardened my heart and pulled it together and thought I could save it for blogging later - a place where I feel free and almost always cry. For the rest of our session, she said those exact words to us 2 more times. And each time, I cried. And I again saw how Ella will be healed through therapy, and I might get a little healing as well.

It started with a chair.

I am sitting at our counter, with a cup of fresh coffee in hand and some nice, calm, uplifting, soul clearing music on. I am watching Ella, with a tired ponytail on top of her head, stuff food into her little mouth. Her eyes are wandering, because she doesn't have glasses on yet. I wonder how much she can see me from back here - so, I smile. She smiles back. She is joyous today - even more than normal. You see, for the first time in her short life, Ella drank out of a straw a few minutes ago. And to you, I know that has little significance, as Owen drank from a straw successfully at 6 months old. And here we are, 15 months old and she just FINALLY figured it out. It is just a straw. It is pink and bends a quarter of the way down. It is cut shorter, to make it easier. It sits in a stubby yellow cup with a worn yellow lid. It is covered in yogurt and banana goop. It holds some weak juice mixture that is nearly tasteless. But, it worked. We sit with therapists 4x per week and talk about this and that and work on this, that and the other. We love them and they love us. They have all fallen in love with Ella, just as most people do. They are constantly in awe of how she catches up, her newest dance moves, her new sound, how fast she recovers, etc. I would hate to be the parent of one of the kids who doesn't come along as fast as Ella has - this has been hard enough. But, as far as feeding, we are at a stand still. She has mastered yogurt and jarred food. She is eager to stuff finger foods in her mouth. She snatches "adult" food of our plates and devours it down to to the smallest of crumbs that we can't believe she can even see. Right now, she is sucking on a mesh bag filled with banana. These particular "feeding accessories" should have a blow up tub that comes with them. There is no way to slurp a mashed up banana and come out clean. Anyway, the food consumption is pretty average for her age. (I never thought I'd be excited about someone calling my child 'average') But, it is the liquids that keep us dependent on a button, so carefully placed in her belly, that connects to a short tube, which holds a syringe where we pour the milk. I want to get rid of that damn tube. Yes, thats right, I said damn. (Please do not comment on the use of that word). I want her to taste what goes in and decide for herself that baby formula, even the expensive organic kind, tastes like dog food. I want her to be able to take medicine by mouth and not mind being sick so much after she tastes the yummy pink kind. I want to forget her tube at home and know its not an emergency and she will be able to drink some other way. We have tried 50 sippy cups, fat straws, skinny straws, cups, bottles, spoons, etc. I talk to other mom's of kids with G-tubes about what to try and what worked for them. We make different potions of yogurts and milk and juice and put it in plastic honey bears with aquarium tubing. Our therapists order expensive things online that we try for a week or two, but we just can't get her to take in the liquids and get them down to wear they want to go. Months ago, I bought a box of straws at the request of the speech therapist. We cut some of them short and started using them as droppers into her mouth. It is a very slow and frustrating way to feed a baby, trust me. It would have taken 2 hours to do one feeding!!! So, we try that from time to time, always prepared for her to suck from the dropper, where we would then put the straw in the cup and hope she reenacts it and gets a big gulp. But, she never did. And this morning, as I'm making coffee and toast and tiptoeing around to keep Owen asleep, I can tell Ella's mouth is dry from all of her Cheerios. I looked in our baby cup drawer, but there was nothing clean for her. And as I looked at my full sink of dirty dishes, I thought maybe we could try the straw today. And I didn't cut it and I put it in this strange juice and I felt a cold sensation on my fingers, as I held the straw up to her mouth. The juice was going up and down in the straw and her short little cup was filled with a yogurt-Cheerio mix. But then, she smiled such a big smile that she couldn't keep in and a whole lot of liquid spilled out. I couldn't believe what I was seeing. She had to have gotten some juice in her mouth to spit it out, right? After a minute or so, she demanded a refill, which I eagerly gave her. And by the end of it, she had consumed about 3 ounces. 3 OUNCES!!!!! That is half way to eliminating 1 tube feeding a day. That is a big step to a big goal. And maybe it is a fluke, which we have had before with other new cups and fads, but this required a skill that she wasn't able to master without going through the pain of surgery and the greater pain of time. And so, we will pray and try again at lunch and see what this kid can do.

Barely hanging on

Today is one of those days where I'm just trying to hang on. It is one of those days where I'm counting down the hours till bed time and praying for an angel to stop by and offer to babysit. By 10 am, we had yogurt everywhere and no more coffee. My "Plan B" was to get Nick home as soon as possible so I can lock my self in my room for a bit and get composed. But, when I tried to call him, I realized my phone was broken. I feel stranded on a desert island.

Lately, whenever I am freaking out and have Nick to rescue me, I go lay in my bed. My dream is of course to take a nap, which cannot happen for about 16.5 more years. I wrap myself in my big down comforter and lay on my green organic cotton pillowcases (thanks, michelle) and shut up. It feels a lot like what I feel a cloud would feel like. I often close my eyes and stop moving and drown out the sound. I sometimes pray, I sometimes count to 10, I sometimes just try to get still. I am not necessarily even trying to hear God, but just trying to feel less of me and more of Him. Sometimes it really works.

I think the first time I "swaddled" myself I was just trying not to scream so my children couldn't hear it.

Babies, especially babies like Ella, love to feel safe. They were cuddled and squished so nicely in that warm cozy womb for so long and then BAM - hello big, bright, loud, scary world. I was never too great at swaddling. My kids could always "bust out" in a matter of seconds. Duct tape would have probably helped, but I figured that would be a good reason to be out of the running for "Parent of the Year" award. Nick was much better than me at wrapping the perfect swaddle. For some reason, kids feel safe and loved when there Dad wraps them up and holds them tight.

I'm drinking coffee from a teacup that says "May the God of hope fill you will all joy and peace. Romans 15:13." It is the last drops of a pot that is empty. It is cold and has soy milk in it and I need a new pot, but, some days, even little things feel hard.

My phone just rang. Yes, the broken phone. The phone that I couldn't get to do a darned thing this morning, rang. It was Nick. Nick, my strong and brave husband that wants to give us the world. He said he was just calling to tell me that he loved me so much and that we were going to have a great life. He said he will do whatever it takes to make sure we have the life that we dreamed of and that God promised. He said today is going to be a great day and that everything will be OK. He had no idea what had just gone on here, in my head. I started to cry. He told me he would see me in a minute. He was just calling to share a little joy and a little peace.

Healed With Love

Ella's senior picture. (actually, she was eating a piece of caramel corn.)

I worry that she will remember. I think of the answers I will have to give to the questions she has about her life. I wonder if she will feel like we made the right choices and did the right things. I look at her sometimes and say “Do you remember? Do you remember the surgeon in his scrubs and the tubes and wires and all the times they pricked your foot? Do you remember, my little Ella?”

I am trying to figure out the difference between the person who is defined by tragedy and the person who can leave their tragedy in the past. Some people are victims forever and some people become successful and inspiring people with a message. What is the thing that lies between that makes their lives turn out so different? What will it take for Ella? What will it be for me?

I was so worried while we were spending Ella’s first weeks of life in the NICU about her feet. The nurses took her blood sugar every two hours for days! Her foot was so swollen and bruised from the IV, that they had to switch it to the other foot, which quickly looked just as bad. Anytime we touched her cute little toes, she would scream and cry and kick. I thought about how she would miss out on one of life’s greatest pleasures because of this pain: pedicures. How I prayed that God could heal her feet and take away the fear and memories.

And I had a hard time seeing how he could do it.

But, he did. And we spent a year trying to heal her with love and touch. I touched her feet with gentleness and smiles throughout her days. We overwhelmed her toes with kisses and tickles. We turned everything into a game where there was no pain or fear, only laughing and only love. And when I held her close, I would cup her feet in my hands and pull them close so she always knew they were safe. And with time, she turned into a little girl who finds pleasure in playing with and chewing on her toes. It’s almost as if she doesn’t remember the pain.

I was spending some time trying to understand all this the other day when I remembered The Healer. Jesus heals rapidly, where things don’t make sense medically or emotionally because of how fast it happened. He also does this other kind of healing and it is something that most people won’t notice and say “Wow, that was a miracle!” This kind of healing is slow in coming. It can be overwhelming and painful. This healing, the one that most of us have known, this looks a lot like love.

A Green Lamp

So, I bought this new lamp. I love it. It is green with a crackly glaze. It has a simple white shade. I saw it and immediately knew where I would put it: on the new end table I recently bought. I thought it would do a lot for my boring and under-decorated living room. It may have been the missing piece.

I found this book in the clearance books at church on Sunday. It is a story about a woman who was date raped and her journey back to feeling like a human again. It is really good. Anyway, she was talking about pain and anger and how those are real feelings that everyone needs to go through and feel and sit in and hate and wait for Jesus to rescue us out of there. It is dirty and smelly and it can be a long time there, but when you go through that, one day you see that He was sitting there with you all of the time. Crying when you were crying, scared when you were scared. Never alone in that place.

I'm not sure how much I have actually grieved over Ella. I went through the whole depression stage and I think that I thought about grief - I may have even knocked on its door, but I never went in. I think I would need a nanny for that. I would have to take a weeks vacation. I don't even get an hour to myself without children a day. How could I ever have a chance to grieve?

So, I bought this lamp and after I got it home, I realized it wasn't even a lamp. It was what I was hoping was the missing piece to my life and my sadness and my problems. But, it couldn't do that because it was just a lamp. A pretty lamp that was 50%, but still, just a lamp. No matter how perfect it looks on my perfect little table, I am no different, no better, no happier, no more emotionally stable at the end of the day.

I only cried at the hospital once while we were there. It was that point where every good parent cries: as their child is being carried off to the O.R. and they are being escorted to the waiting room to just wait. I waited till no one could see me but Nick and I cried hard - for about 8 seconds. I wanted to make sure I stopped before my Mom saw me or anyone else who might make me let go. I made sure I didn't cry again during our stay - at this point, if they started, they might not stop. So, I make them stop before they start and again go on through my days, never feeling or hurting or stopping or grieving - with a green lamp that sits on a table and does nothing more than turn on and off.

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.