Yesterday was hard.
I believe in the power of intercessory prayer.
Shortly after I posted, Sarah started getting better. And not a little better-dramatically better. She just seemed to wake up! She was around midnight last night, she was cheerful and alert. She was pulling on her lines and tubes. She was signing for Dad. She was twisting around in her bed. She was even blowing kisses and waving. It was precious. I left to refill my water bottle and when I returned, Sarah was looking at me with sleepy eyes and she raised her hand way up high in the air to wave. I got excited and then she got excited and the nurse came in and we were all excited together.
I stayed up until about three, chatting with the nurse and playing with a very awake and cheerful Sarah.
I missed neurosurgery rounds- they round really early- but apparently the neurosurgeon was ready to send her home today! She will absolutely not go home today, or even tomorrow. All the teams have to be ready, but this is still excellent news as it means that neurosurgery is not considering a surgical intervention for the hematoma anymore.
We are on our way to wellness, with obstacles shrinking.
Sarah is not getting food yet. They would like to restart, but restarting is always a bit of a gamble after as much tummy trouble as she had yesterday. I hope and expect that she will tolerate food well, but we cannot plan on it. Since we cannot plan on it, it has to wait until after the MRI because we cannot have her throwing up and risking aspiration during the MRI.
Which brings me to the MRI. She is still in a collar. We still think her spine is OK, but cannot be sure and an MRI is the best way to know for sure. It is not previously scheduled and it is not an emergency, so we are at the end of the line which means late today- they are saying between five and seven. So I suspect eight or nine. The MRI is sedated.
Which brings me to... her blood work. Sarah is a hard stick. And it gets harder every time someone misses or loses an IV. So, after a few particularly difficult days, even drawing blood for labs is hard. I have asked them to hold off on more blood until she is sedated, since she is going to be sedated. I am also going to push for better access if they think we are going to be here for more than another day or two. You would think a little blood work would not be a big deal, but the numbers suck. She has needed blood work and follow up blood work two or three times ever day and ever time it takes at least two or three (and sometimes more) sticks. So we are talking about ten sticks a day which is unacceptable. Why so much blood work? It is not because they are forgetting things.
One of the tests is for coagulation. Since this is not a common issue with Sarah, the numbers mean very little to me and so I do not remember them. She needed FFP (plasma) which is a blood product. Two hours after it was given, then rechecked and were still unhappy with the result, so they gave more FFP. Now they have to check again, but after three (three!!!) unsuccessful and painful arterial sticks, I sent the doctor away to figure out something else.
Miss Sarah looks miserable, but darling. She is still in the trauma collar and she still has the EEG leads all over her head wrapped in a very fancy stocking cap. (The EEG did not show seizure activity, which is unsurprising wonderful news.) She is on a vent. Two IVs are in- one in each foot. The blood pressure cuff is on, since they are still checking regularly. Regular leads for heart & respirator rates and a pulse ox. Sarah looks like a very serious ICU patient, but the truth is, at the moment, she is doing quite well and most of these things should be coming off soon.
Oh! Rebecca took her bottle last night, finally. And the letter "i" is working again- so this post was not nearly as frustrating as the last to type.
Prayer works. Thank you.
Friday, October 25, 2013
Thursday, October 24, 2013
Update
I will do the best I can. My laptop is acting up. It is inserting the letter "I" all over the place. It seems like there could be a moral there. In the interest of sanity, I am aiming for brevity. Moralizing annoyance can happen another day.
Just hours after my last post, Sarah fell. She hit her head. For about half an hour everything seemed fine, but then she threw up. We called for an ambulance to take her to the hospital. The ER at Lansdowne did a CT. At the time she was acting normally. She was blowing kisses and arguing with everyone. We all expected a beautiful CT and then home within a few hours. I knew something was wrong when the previously confident and cheerful ER doctor came in looking confused and apologetic.
The CT showed a bleed. The X-ray showed a possible spine injury. The doctor was worried. Worried enough to send for a helicopter to take Sarah to Children's. Worried enough to tell me to get my husband to the hospital in a hurry. Josh left the other two with a neighbor. I called my Dad to meet the neighbor at my house and stay with the girls overnight. Josh met me at the hospital and followed the helicopter to Children's.
The emergency department at Children's did a CT of her spine. It also showed a potential spine injury, so she was put in a collar to stabilize her neck and an MRI was ordered. They could say definitively that what they were looking at was not normal. But they could not tell if it was normal for Sarah or if there was trauma. An MRI would show soft tissue and could answer the question.
The bleed was the top concern. Our neurosurgery team had a look at the images and made their recommendation. Sarah would be admitted to the PICU and she would stay for observation for a day or two. Though the bleed was significant, there seemed to be room. Her brain was not obviously under an pressure, so our best gauge was neurological status, and that seemed good. She was alert. She responded appropriately to all the nasty things that happen in these situations. (Needles, needles and more needles: temper, tears and tantrums.)
Josh went home to be with Rebecca and Lily at 1 a.m.. I stayed with Sarah. That first night was an awful battery of tests and imaging. So, when she was tired the next day, I was not concerned. Night 2 she looked great! She woke up happy. She was signing, "Out! Out! Dad!" It was incredibly cute.
But by mid-morning today, she was looking more tired. Still, I though that it was not outside the realm of normal for her to be so tired and I did not worry.
Then we had to get her read for her MRI. We changed her trach, her trach ties, her stabilization collar and her diaper. She did not get mad. In fact, she barely responded at all. Lethargy is a neurological symptom. Then she started throwing up- another neurological symptom.
They sent her for another CT, and though she made it down to radiology without issue, she threw up during the test. There was no was she was stable enough to get an MRI- which is much longer and requires that she be alone- monitored but alone. They still think the MRI will show that her spine is fine, but they need the confirmation before they can take off the collar.
This CT looked slightly better than the first. Significant bleeding, but no obvious pressure. Neurology and neurosurgery both want to watch and wait but they both also said we should be looking elsewhere for causes.
Neurology erred on the side of caution, and ordered an EEG. The PICU team also ordered a slew of other tests.
Sarah has been on her vent today (usually only needs it at night) and she has needed oxygen. She has had a fever for most of the day yesterday and overnight. Tylenol did not break the fever, but Motrin is not an option because of the bleed. Her blood work had a pretty normal white blood count- which should be encouraging, but isn't. It means that infection is probably not the cause, which means we are still wondering what is and praying her brain is OK. There are tons of other tests with various results- but the bottom line is that something wrong and we do not have a definite cause yet.
Meanwhile, Rebecca is refusing to take a bottle and Lily has to be in school ever day. She is wound up, worried and tired.
So much for brevity.
We are peaceful, so thank you for your prayers. It is prayer that has carried us. We are planning to be here for the weekend, so we are planning to stay at the Ronald McDonald house. Josh will bring the girls out here sometime after Lily gets out of school tomorrow.
Just hours before our latest episode began I wrote this in my last blog post:
"Having a panic attack was quite a blow to my courage. Having more than one took its toll on my confidence. I cannot do this. And that is the point.
"My grace is sufficient for you, for power is made perfect in weakness." 2 Corinthians 12:9
"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7
Everyone has a breaking point. If we rely on ourselves, it is only a matter of time before we find ours. I do not want to trivialize fears. But it is our choice whether to go to God or "succomb unrestrainedly." I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down."
True, but not easy.
Tired, I am singing to myself and to Sarah:
I heard the voice of Jesus say,
"Come unto me and rest;
lay down, thou weary one, lay down
thy head upon my breast."
I came to Jesus as I was,
so weary, worn, and sad;
I found in him a resting place,
and he has made me glad.
I heard the voice of Jesus say,
"Behold, I freely give
the living water; thirsty one,
stoop down and drink, and live."
I came to Jesus, and I drank
of that life-giving stream;
my thirst was quenched, my soul revived,
and now I live in him.
I heard the voice of Jesus say,
"I am this dark world's light;
look unto me, thy morn shall rise,
and all thy day be bright."
I looked to Jesus, and I found
in him my Star, my Sun;
and in that light of life I'll walk
till traveling days are done.
Tuesday, October 22, 2013
When Rebecca was born, she came home to a very chaotic home. Nurses and vents and supplies and supply companies and visitors... It was not peaceful. Those mythical dreamy mornings with beautiful new baby sleeping after eating between mom and dad in the apparently unused bed could not be further from her early reality.
While my body was recovering from her delivery, I had a lot of help but also a lot of stress. So when I was diagnosed with and treated for high blood pressure, it was no surprise, but it made me think. I worried and worry snowballed quickly.
Normal baby worries. Normal financial worries. I worried about my health and Sarah's health. I worried about breastfeeding while Sarah was in the hospital. I worried about money and our bills going up. I worried about needing a car. I worried about one normal worry after another. I barely noticed when my worries graduated from normal.
What if I die? Who will take care of my kids? Who can understand the physical and emotional needs of my girls? What if I die when I am alone with the kids?
I had a panic attack. The first time it happened, I literally thought I was dying. I was not thinking clearly, and I did the only thing I could think of: I called my sister so I would not be alone. I made her stay on the phone with me. I needed to know that if something happened, someone would know and make sure my kids were OK. I could not get around the fear. It was oppressive, physically and emotionally.
I went to the doctor and he told me I was not dying. I did not believe him. I thought I must have described my symptoms wrong. I went to another doctor.
"It was anxiety."
"It did not feel like anxiety. I felt like I was dying."
"That is what an anxiety attack feels like."
The more I worried, the less capable I felt. This feeling is a far cry from the insensible peace I remember and wrote about when Sarah went through some of her worst times.
Some people like to talk about feelings as though they are nothing. "But is it real?" It is tempting. If I can disassociate feelings and reality, I can decide how to feel.
On the other hand, some people like to immerse themselves in feelings, as though they are the only reality. Again, that is tempting, until it is terrifying.
Worries are real. Emotions are real. Problems are real. Even the physical effects of these are real.
I have read in a few places that it is not uncommon for mothers of children with special needs to worry more than normal about our mortality. Who would willing, aware and able, step into my shoes?
That is why I thought it was worthwhile to share. Fear may be a rational response, but fear is not rational. I can not reason my way out of these feelings. In retrospect, it is easy to laugh about irrational fears. It is easy to talk about how important it is to avoid the stress snowball. But can I point to a specific moment a specific worry, and say where I went wrong?
The phrase, "give an inch and he'll take a mile" comes to mind.
I keep coming back to this quote from Chrysostom. It is likely that there is a better one, but this one stuck a couple years ago and has become familiar.
The worry and the fear are real, but they are not unrestrainable. I am emotionally healthy. I am strong. I can do this. I want it to be true. I can do this because I must.
Only, I can't. Having a panic attack was quite a blow to my courage. Having more than one took its toll on my confidence. I cannot do this. And that is the point.
Everyone has a breaking point. If we rely on ourselves, it is only a matter of time before we find ours. I do not want to trivialize fears. But it is our choice whether to go to God or "succomb unrestrainedly." I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down.
While my body was recovering from her delivery, I had a lot of help but also a lot of stress. So when I was diagnosed with and treated for high blood pressure, it was no surprise, but it made me think. I worried and worry snowballed quickly.
Normal baby worries. Normal financial worries. I worried about my health and Sarah's health. I worried about breastfeeding while Sarah was in the hospital. I worried about money and our bills going up. I worried about needing a car. I worried about one normal worry after another. I barely noticed when my worries graduated from normal.
What if I die? Who will take care of my kids? Who can understand the physical and emotional needs of my girls? What if I die when I am alone with the kids?
I had a panic attack. The first time it happened, I literally thought I was dying. I was not thinking clearly, and I did the only thing I could think of: I called my sister so I would not be alone. I made her stay on the phone with me. I needed to know that if something happened, someone would know and make sure my kids were OK. I could not get around the fear. It was oppressive, physically and emotionally.
I went to the doctor and he told me I was not dying. I did not believe him. I thought I must have described my symptoms wrong. I went to another doctor.
"It was anxiety."
"It did not feel like anxiety. I felt like I was dying."
"That is what an anxiety attack feels like."
The more I worried, the less capable I felt. This feeling is a far cry from the insensible peace I remember and wrote about when Sarah went through some of her worst times.
Some people like to talk about feelings as though they are nothing. "But is it real?" It is tempting. If I can disassociate feelings and reality, I can decide how to feel.
On the other hand, some people like to immerse themselves in feelings, as though they are the only reality. Again, that is tempting, until it is terrifying.
Worries are real. Emotions are real. Problems are real. Even the physical effects of these are real.
I have read in a few places that it is not uncommon for mothers of children with special needs to worry more than normal about our mortality. Who would willing, aware and able, step into my shoes?
That is why I thought it was worthwhile to share. Fear may be a rational response, but fear is not rational. I can not reason my way out of these feelings. In retrospect, it is easy to laugh about irrational fears. It is easy to talk about how important it is to avoid the stress snowball. But can I point to a specific moment a specific worry, and say where I went wrong?
The phrase, "give an inch and he'll take a mile" comes to mind.
I keep coming back to this quote from Chrysostom. It is likely that there is a better one, but this one stuck a couple years ago and has become familiar.
"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men. For, if we ourselves do not succomb unrestrainedly to grief, he will quickly take away the portion of grief we feel; whereas, if we give way to excessive grief, he will permit us to become entirely possessed by it. If we give thanks for it, we shall not be disheartened." St John Chrysostom
Only, I can't. Having a panic attack was quite a blow to my courage. Having more than one took its toll on my confidence. I cannot do this. And that is the point.
"My grace is sufficient for you, for power is made perfect in weakness." 2 Corinthians 12:9
"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7
Everyone has a breaking point. If we rely on ourselves, it is only a matter of time before we find ours. I do not want to trivialize fears. But it is our choice whether to go to God or "succomb unrestrainedly." I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down.
Thursday, September 12, 2013
Light
I was always kind of wary of posting pictures on the internet. I enjoyed going on facebook and seeing my friend's kids, but I was reticent. I posted pictures every once in awhile, after all, my kids are pretty much the cutest things you will find on the internet. But I worried vaguely and I did not post often.
Then Sarah was born and pictures were even more rare. I was always in the hospital, so the pictures I had were rarely good. Lighting is not good for photography in hospitals. Even if I got good pictures, when could I post them? I was either at home and insanely busy or I was in the hospital with spotty internet.
Then things started to settle down. I was not in the habit of posting them, so I didn't, at least not often.
Then an awful thing happened to one of my new friends on facebook. Pictures of her beautiful little girl were stolen and captioned with horrible captions. That gorgeous baby's pictures went viral captioned in ways that would make any mother cry. I did not think of myself as being a frightened so much as being protective, but I consciously stopped posting pictures. It did not make a huge difference, since I had not been posting many anyway.
The mother of that baby did not cower in the corner. She stood up for her baby. She confronted the bully who had stolen the pictures on his twitter account. She repeatedly called him out. She contacted Twitter and Facebook, demanding that the offensive pictures be taken down. The bully was unrepentant. Twitter and Facebook denied responsibility. It was a nightmare. So she went public. She created an account and attracted a huge following of supporters. She contacted local media. She speaks proudly about her daughter and is not intimidated by the bullies.
I was intimidated.
My experiences with my Sarah have been mostly positive, or at least not negative. People don't always know how to act, but I can count on one hand the number of times someone has been deliberately offensive. (Two, if you must know. Mom's do not forget these encounters. Both times the aggressor backed off when I spoke up.) What would I do if thousands of people were laughing at a picture of my baby? Seeing someone else's baby attacked in that way hurt awfully. It was very hard to keep believing in humanity when an attack on a three month old gets a few hundred thousand likes.
But, there are also lots of uplifting pictures all over the internet. The one I saw today was of an incredibly cute little girl, apparently with Down's syndrome, captioned, "See, the thing is, I have a really awesome life and there's no prenatal test for that."
Then I saw a study that says that exposure changes attitudes. The study showed that kids who spend time with kids who have disabilities are more empathetic towards kids with disabilities. That's a mouthful of obvious. Still it was what I needed to face my fear.
No more hiding the light. My daughters are beautiful.
I will share pictures.
Then Sarah was born and pictures were even more rare. I was always in the hospital, so the pictures I had were rarely good. Lighting is not good for photography in hospitals. Even if I got good pictures, when could I post them? I was either at home and insanely busy or I was in the hospital with spotty internet.
Then things started to settle down. I was not in the habit of posting them, so I didn't, at least not often.
Then an awful thing happened to one of my new friends on facebook. Pictures of her beautiful little girl were stolen and captioned with horrible captions. That gorgeous baby's pictures went viral captioned in ways that would make any mother cry. I did not think of myself as being a frightened so much as being protective, but I consciously stopped posting pictures. It did not make a huge difference, since I had not been posting many anyway.
The mother of that baby did not cower in the corner. She stood up for her baby. She confronted the bully who had stolen the pictures on his twitter account. She repeatedly called him out. She contacted Twitter and Facebook, demanding that the offensive pictures be taken down. The bully was unrepentant. Twitter and Facebook denied responsibility. It was a nightmare. So she went public. She created an account and attracted a huge following of supporters. She contacted local media. She speaks proudly about her daughter and is not intimidated by the bullies.
I was intimidated.
My experiences with my Sarah have been mostly positive, or at least not negative. People don't always know how to act, but I can count on one hand the number of times someone has been deliberately offensive. (Two, if you must know. Mom's do not forget these encounters. Both times the aggressor backed off when I spoke up.) What would I do if thousands of people were laughing at a picture of my baby? Seeing someone else's baby attacked in that way hurt awfully. It was very hard to keep believing in humanity when an attack on a three month old gets a few hundred thousand likes.
But, there are also lots of uplifting pictures all over the internet. The one I saw today was of an incredibly cute little girl, apparently with Down's syndrome, captioned, "See, the thing is, I have a really awesome life and there's no prenatal test for that."
Then I saw a study that says that exposure changes attitudes. The study showed that kids who spend time with kids who have disabilities are more empathetic towards kids with disabilities. That's a mouthful of obvious. Still it was what I needed to face my fear.
"You are the light of the world. A city set on a mountain cannot be hidden. Nor do they light a lamp and then put it under a bushel basket; it is set on a lampstand, where it gives light to all in the house. Just so, your light must shine before others, that they may see your good deeds and glorify your heavenly Father." Matthew 5:14-16
No more hiding the light. My daughters are beautiful.
I will share pictures.
Wednesday, September 11, 2013
Pride
Thoughts on 9-11
Today my oldest daughter went to school. She was dressed in her red, white, and blue. I wondered if they would talk about what happened twelve years ago. They didn't, at least not in her kindergarten class.
I did not want to tell her. It is too awful. I do not want her to live in fear. So I didn't. I just told her that today we are celebrating many people who have made sacrifices so that we can live in our wonderful country.
I've been thinking about sacrifice. And forgiveness. And anger.
Twelve years ago, some evil men made it their business to attack our proud country. They believed that by bringing down symbols of military power and economic prosperity, they could bring our country to its knees. American heroes stood up and astounded the world. When the towers were falling, our heroes ran toward the destruction to help. When passengers realized they were on a weapon aimed at DC, they did not turn into helpless captives, they died protecting the target. A lot of people died that day. A lot of families will never be the same.
America did not fall even an inch. We stood a little taller the next day, heartbroken but proud. It turns out that money is not what makes America proud. Nor is military prowess, though indeed we are proud of our military. The pride of America is hard to pin down.
Our military fights to protect the right to speech, even when the speech in question is given by pacifists. Like siblings, we fight and argue and call each other names, but don't you dare think that just because we are attacking each other you can. In America, when see people who need help and we argue about how to help, not whether or not we should. In America, we have a particularly arrogant group who call themselves a Church- and when the Westboro Baptists speak their hatred, we let them- but we are proud to report that in classic American style, a group of bikers ride around the funerals to protect the mourners from hearing the ugliness.
We are diverse. We do not have diversity ironed out neatly- discrimination happens. But we try. We are not getting it right, but it is absolutely a priority. We aim high.
The majority of us are Christian, a source of great pride to some. Still greater pride though, is in our insistence that a majority cannot dominate. Did you see the video about the soldier who stood up to vicious discrimination? "That's the reason I wear the uniform- so anyone can live free in this country."
That is the America I am proud to claim.
It is terribly easy to hate in the abstract, but it is hard to hate people you know.
I will have to teach my daughters about what happened twelve years. They will see suffering. They will see anger. I will have to teach forgiveness. Fr Barron says, "One way to practice forgiveness is to say, in regard to any hurt, insult, or injustice that has been done to you, “this is our problem,” that is to say, a problem that has to be solved both by you and by the person who has offended you. This is not to indulge in “blaming the victim” politics or to be soft on evil, but it is a willingness to get down and do the hard work of drawing an offender back into the circle of the community. It is a loving refusal to give up even on the wickedest of people."
We are not honoring victims of 9/11 or waving a proud patriotic banner when we spew hate toward Muslims. In America you are free to speak. You are free to think. You are free to believe. You are free to preach.
We have some big problems in this country. We have millions of undocumented people, living in the shadows. People go bankrupt paying for necessary medicine. Important issues like abortion and homosexual marriage bring out the devil in all of us. But every once in awhile, we get to stop and realize that we can have these fights because we are in a pretty awesome country.
We don't happily coexist, we disagree loudly. That loud disagreement is at least part of the pride of America.
Today my oldest daughter went to school. She was dressed in her red, white, and blue. I wondered if they would talk about what happened twelve years ago. They didn't, at least not in her kindergarten class.
I did not want to tell her. It is too awful. I do not want her to live in fear. So I didn't. I just told her that today we are celebrating many people who have made sacrifices so that we can live in our wonderful country.
I've been thinking about sacrifice. And forgiveness. And anger.
Twelve years ago, some evil men made it their business to attack our proud country. They believed that by bringing down symbols of military power and economic prosperity, they could bring our country to its knees. American heroes stood up and astounded the world. When the towers were falling, our heroes ran toward the destruction to help. When passengers realized they were on a weapon aimed at DC, they did not turn into helpless captives, they died protecting the target. A lot of people died that day. A lot of families will never be the same.
America did not fall even an inch. We stood a little taller the next day, heartbroken but proud. It turns out that money is not what makes America proud. Nor is military prowess, though indeed we are proud of our military. The pride of America is hard to pin down.
Our military fights to protect the right to speech, even when the speech in question is given by pacifists. Like siblings, we fight and argue and call each other names, but don't you dare think that just because we are attacking each other you can. In America, when see people who need help and we argue about how to help, not whether or not we should. In America, we have a particularly arrogant group who call themselves a Church- and when the Westboro Baptists speak their hatred, we let them- but we are proud to report that in classic American style, a group of bikers ride around the funerals to protect the mourners from hearing the ugliness.
We are diverse. We do not have diversity ironed out neatly- discrimination happens. But we try. We are not getting it right, but it is absolutely a priority. We aim high.
The majority of us are Christian, a source of great pride to some. Still greater pride though, is in our insistence that a majority cannot dominate. Did you see the video about the soldier who stood up to vicious discrimination? "That's the reason I wear the uniform- so anyone can live free in this country."
That is the America I am proud to claim.
It is terribly easy to hate in the abstract, but it is hard to hate people you know.
I will have to teach my daughters about what happened twelve years. They will see suffering. They will see anger. I will have to teach forgiveness. Fr Barron says, "One way to practice forgiveness is to say, in regard to any hurt, insult, or injustice that has been done to you, “this is our problem,” that is to say, a problem that has to be solved both by you and by the person who has offended you. This is not to indulge in “blaming the victim” politics or to be soft on evil, but it is a willingness to get down and do the hard work of drawing an offender back into the circle of the community. It is a loving refusal to give up even on the wickedest of people."
We are not honoring victims of 9/11 or waving a proud patriotic banner when we spew hate toward Muslims. In America you are free to speak. You are free to think. You are free to believe. You are free to preach.
We have some big problems in this country. We have millions of undocumented people, living in the shadows. People go bankrupt paying for necessary medicine. Important issues like abortion and homosexual marriage bring out the devil in all of us. But every once in awhile, we get to stop and realize that we can have these fights because we are in a pretty awesome country.
We don't happily coexist, we disagree loudly. That loud disagreement is at least part of the pride of America.
Monday, September 9, 2013
Open letter
Open letter to all parents:
Dear Moms and Dads,
I want to talk about something uncomfortable. It has come to my attention that many of the best among you are making a big mistake. I understand. I was too, two years ago.
My daughter has a rare genetic syndrome, called Apert syndrome. When she was a baby, the plates in her skull fused together. That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure. Her head is larger than average. When she was born, her fingers and toes were fused together. She has had the first surgery to separate her fingers, so now her thumb and pinkie are released. She has a tracheotomy, so she cannot talk yet. Because of various complications, she has spent a significant portion of her young life in the hospital. She is developing muscles that she needs to sit up on her own and to walk. She will do these things, but for now she is in an adaptive chair. My beautiful girl stands out.
I already have to teach my girls that some people are just mean and you cannot let it bother you. I already have to teach my girls that loving people who are mean is part of what it means to be Christian. I am trying to teach them that most people are good, and that is where you come in.
When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids. They look. Some are puzzled. Some worried. The most adventurous of them ask questions. Almost all are curious.
Staring is rude. Pointing is rude. You know this. You are embarrassed by your child because they are pointing or staring. You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You are teaching your child to be afraid of what they do not understand. I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello. Introduce yourself and your child. I will introduce myself and my children. Your child will ask questions. Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.
Here is the thing: kids categorize. They need your help, and maybe mine, to make sure Sarah gets into the right category. They ask questions to figure out how things fit in their world. When you don't let them ask their "rude" questions, you confirm my daughter as "other." Believe it or not, every kid I have met who was allowed to ask as many "rude" questions as they liked, learned in just minutes to see my daughter as I see her. She is just a kid.
She loves lollipops. She laughs at her granddad. She has favorite music. She is going to school this year. Her favorite color changes all the time. Today it was green. She has a younger sister and an older sister. Her favorite TV show is Veggie Tales. She is Daddy's punkin and Mommy's sweet pea. She will absolutely charm you with her wide, blue eyes.
Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine that this happens over and over again. She is a bright little girl, and this is very hurtful.
At the very least you can model the behavior you wish your child had shown. Make eye contact with her and smile. Anything less and it won't matter what you say about diversity later. Your kid and my kid both got the same message from your embarrassment: She is "other." She is something, not someone. The initial fear was confirmed. I will take rude questions over that hurt any day.
I am not accusing. I know it is hard.
There are nasty bullies in the world. We will get over that. We will get over the stares and the pointing from people who should know better. We will get over the nasty comments. We will get over the name calling. We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her. People who see her. And she is amazing.
Kids are not mini adults. They are astounding little people. They are curious and open and full of wonder. You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair. You can teach them to see her as a potential friend. Or, you can teach them to be afraid. It is your choice. I won't judge. Like I said, I was you and I did not know how to act either. You don't have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her. Teach your kids to see her. Please.
Dear Moms and Dads,
I want to talk about something uncomfortable. It has come to my attention that many of the best among you are making a big mistake. I understand. I was too, two years ago.
My daughter has a rare genetic syndrome, called Apert syndrome. When she was a baby, the plates in her skull fused together. That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure. Her head is larger than average. When she was born, her fingers and toes were fused together. She has had the first surgery to separate her fingers, so now her thumb and pinkie are released. She has a tracheotomy, so she cannot talk yet. Because of various complications, she has spent a significant portion of her young life in the hospital. She is developing muscles that she needs to sit up on her own and to walk. She will do these things, but for now she is in an adaptive chair. My beautiful girl stands out.
I already have to teach my girls that some people are just mean and you cannot let it bother you. I already have to teach my girls that loving people who are mean is part of what it means to be Christian. I am trying to teach them that most people are good, and that is where you come in.
When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids. They look. Some are puzzled. Some worried. The most adventurous of them ask questions. Almost all are curious.
Staring is rude. Pointing is rude. You know this. You are embarrassed by your child because they are pointing or staring. You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You are teaching your child to be afraid of what they do not understand. I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all. I would like to challenge you to have the conversation right there. Put a smile on. Say hello. Introduce yourself and your child. I will introduce myself and my children. Your child will ask questions. Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.
Here is the thing: kids categorize. They need your help, and maybe mine, to make sure Sarah gets into the right category. They ask questions to figure out how things fit in their world. When you don't let them ask their "rude" questions, you confirm my daughter as "other." Believe it or not, every kid I have met who was allowed to ask as many "rude" questions as they liked, learned in just minutes to see my daughter as I see her. She is just a kid.
She loves lollipops. She laughs at her granddad. She has favorite music. She is going to school this year. Her favorite color changes all the time. Today it was green. She has a younger sister and an older sister. Her favorite TV show is Veggie Tales. She is Daddy's punkin and Mommy's sweet pea. She will absolutely charm you with her wide, blue eyes.
Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine that this happens over and over again. She is a bright little girl, and this is very hurtful.
At the very least you can model the behavior you wish your child had shown. Make eye contact with her and smile. Anything less and it won't matter what you say about diversity later. Your kid and my kid both got the same message from your embarrassment: She is "other." She is something, not someone. The initial fear was confirmed. I will take rude questions over that hurt any day.
I am not accusing. I know it is hard.
There are nasty bullies in the world. We will get over that. We will get over the stares and the pointing from people who should know better. We will get over the nasty comments. We will get over the name calling. We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her. People who see her. And she is amazing.
Kids are not mini adults. They are astounding little people. They are curious and open and full of wonder. You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair. You can teach them to see her as a potential friend. Or, you can teach them to be afraid. It is your choice. I won't judge. Like I said, I was you and I did not know how to act either. You don't have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her. Teach your kids to see her. Please.
Wednesday, June 12, 2013
Rebecca is one month old. It does not seem possible.
Rebecca is strong. When people meet her they first coo over how sweet and tiny and delicate and feminine she is, and she is all those things. Then she decides that she wants something and her expression of want inevitably produces surprise. She is strong. I was made uncomfortably aware of her strength starting about two months before she was born. She reiterated for a larger audience immediately at birth.
"I just want to hear her cry," Dad said. (After Sarah, that does not sound crazy.) Obliging her father's only request, she introduced herself to the world loudly. For about an hour.
My extended family keeps in touch via an email listserve, where we can argue and discuss and post baby pictures or amusing anecdotes. In a recent (relatively, it has been a few months) family discussion someone asked about a book about Mary. I cannot remember the title and had not read the book, but it yielded and interesting discussion. The book was an attempt to tell the narrative of the gospels from Mary's perspective. Apparently the author thought that traditional depictions of Our Lady are weak and watery and wrote a character that few would recognize. So there was a discussion of Mary's humanity and various perceptions.
Prior to that conversation, it had never occurred to me to wonder whether Mary was a ninny. I was a little surprised to learn that it is not an uncommon view, at least in art if not in reality. Perhaps she is
mistreated by art and history.
I began to wonder what shaped my own ideas about Mary. I use the same words. Mild. Gentle. Sweet. Beautiful. Obedient. Loving. Feminine.
Mary is a mother. She is not just any mother, of course. She is the mother of God. Theotokos. And He gave His mother to us. She is my mother. That is a role I could begin wrap my mind around as a child when my perceptions were forming. I have a mother; I know what that role looks like.
Mother is someone who gives everything all day and all night if I need her. Mother is someone who listens carefully and patiently. Mother is someone who says that she cannot fix every problem, but somehow manages to fix most of them. She teaches courage and love by example. She is soft and gentle and impossibly strong. She is quietly protective. In any event, that is what I saw.
Mary is feminine. She is not just a woman, but the woman chosen above the rest. "Blessed are you among women." A feminine ideal.
The women I knew were diverse.
From my mother and my aunts I learned about generosity. You give because there is a need, no because you want to or because you have extra. Generosity does not have to be difficult, but it is sometimes. It is not generosity if the recipient feels guilty for taking the gift. Give freely.
From my grandmother I learned that everything has a time and place. You may not have time to read and live what the Church fathers had to say about contemplative prayer when you are a half dozen kids. That is OK. Learn what God wants from you today, and trust that He will make you able.
I learned that it is possible, preferable even, to do difficult things cheerfully.
I learned that love is difficult. I learned that love is a decision, not a feeling.
They were feminists and anti-feminism traditionalists, which to my young eyes, looked very similar since both were insisting that women be allowed to be feminine and that femininity is not a weakness but a strength.
Some of the women who inspired me stayed home with their children, some were career women. Most, but not all, shared my faith. They had different priorities, sensibilities and personalities. Some of the women who inspired me followed their beliefs right to jail.
They were women who loved, and because they loved, they challenged and supported those they loved.
The women I watched were advocates. They were activists. They seemed fearless, though in fact they were not. They faced their fears. They were tough, seemingly unbreakable.
They were fun. To a kid, that is everything. Humor. Joy. Life.
It never occurred to me that a woman being womanly could be a mere supporting character. I am not suggesting that the women were better than the men. But if I am going to imagine not just a woman, but a woman who is the ideal of femininity, I cannot imagine her passive or feeble. I can give her all the adjectives Mary usually gets. That does not confuse my idea of woman. Mild. Gentle. Sweet. Beautiful. Obedient. Loving. Feminine. These adjectives are not easy to accomplish unless they are passive. If you do not have opinions, emotions, or a temper you may look mild, temperate or gentle. But it isn't real, is it? It takes real strength to display these qualities when they are tested, doesn't it? When a child is disobedient, it may be easy to ignore it- but it is wrong! It may be easy to lose your temper- but it is wrong! Can you correct firmly, lovingly, effectively, repeatedly and gently?
I guess I don't know how I would define feminine. But in my mind, in my experience, it has a lot to do with strength. I hope I can surround my daughters with the kind of women I grew up with. I am proud of my beautiful, strong, tough, resilient, feminine daughters.
Rebecca is strong. When people meet her they first coo over how sweet and tiny and delicate and feminine she is, and she is all those things. Then she decides that she wants something and her expression of want inevitably produces surprise. She is strong. I was made uncomfortably aware of her strength starting about two months before she was born. She reiterated for a larger audience immediately at birth.
"I just want to hear her cry," Dad said. (After Sarah, that does not sound crazy.) Obliging her father's only request, she introduced herself to the world loudly. For about an hour.
My extended family keeps in touch via an email listserve, where we can argue and discuss and post baby pictures or amusing anecdotes. In a recent (relatively, it has been a few months) family discussion someone asked about a book about Mary. I cannot remember the title and had not read the book, but it yielded and interesting discussion. The book was an attempt to tell the narrative of the gospels from Mary's perspective. Apparently the author thought that traditional depictions of Our Lady are weak and watery and wrote a character that few would recognize. So there was a discussion of Mary's humanity and various perceptions.
Prior to that conversation, it had never occurred to me to wonder whether Mary was a ninny. I was a little surprised to learn that it is not an uncommon view, at least in art if not in reality. Perhaps she is
mistreated by art and history.
I began to wonder what shaped my own ideas about Mary. I use the same words. Mild. Gentle. Sweet. Beautiful. Obedient. Loving. Feminine.
Mary is a mother. She is not just any mother, of course. She is the mother of God. Theotokos. And He gave His mother to us. She is my mother. That is a role I could begin wrap my mind around as a child when my perceptions were forming. I have a mother; I know what that role looks like.
Mother is someone who gives everything all day and all night if I need her. Mother is someone who listens carefully and patiently. Mother is someone who says that she cannot fix every problem, but somehow manages to fix most of them. She teaches courage and love by example. She is soft and gentle and impossibly strong. She is quietly protective. In any event, that is what I saw.
Mary is feminine. She is not just a woman, but the woman chosen above the rest. "Blessed are you among women." A feminine ideal.
The women I knew were diverse.
From my mother and my aunts I learned about generosity. You give because there is a need, no because you want to or because you have extra. Generosity does not have to be difficult, but it is sometimes. It is not generosity if the recipient feels guilty for taking the gift. Give freely.
From my grandmother I learned that everything has a time and place. You may not have time to read and live what the Church fathers had to say about contemplative prayer when you are a half dozen kids. That is OK. Learn what God wants from you today, and trust that He will make you able.
I learned that it is possible, preferable even, to do difficult things cheerfully.
I learned that love is difficult. I learned that love is a decision, not a feeling.
They were feminists and anti-feminism traditionalists, which to my young eyes, looked very similar since both were insisting that women be allowed to be feminine and that femininity is not a weakness but a strength.
Some of the women who inspired me stayed home with their children, some were career women. Most, but not all, shared my faith. They had different priorities, sensibilities and personalities. Some of the women who inspired me followed their beliefs right to jail.
They were women who loved, and because they loved, they challenged and supported those they loved.
The women I watched were advocates. They were activists. They seemed fearless, though in fact they were not. They faced their fears. They were tough, seemingly unbreakable.
They were fun. To a kid, that is everything. Humor. Joy. Life.
It never occurred to me that a woman being womanly could be a mere supporting character. I am not suggesting that the women were better than the men. But if I am going to imagine not just a woman, but a woman who is the ideal of femininity, I cannot imagine her passive or feeble. I can give her all the adjectives Mary usually gets. That does not confuse my idea of woman. Mild. Gentle. Sweet. Beautiful. Obedient. Loving. Feminine. These adjectives are not easy to accomplish unless they are passive. If you do not have opinions, emotions, or a temper you may look mild, temperate or gentle. But it isn't real, is it? It takes real strength to display these qualities when they are tested, doesn't it? When a child is disobedient, it may be easy to ignore it- but it is wrong! It may be easy to lose your temper- but it is wrong! Can you correct firmly, lovingly, effectively, repeatedly and gently?
I guess I don't know how I would define feminine. But in my mind, in my experience, it has a lot to do with strength. I hope I can surround my daughters with the kind of women I grew up with. I am proud of my beautiful, strong, tough, resilient, feminine daughters.
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