Monday, December 8, 2014

Muggle Born-- With Diamonds on the Top of Her Head

ok, so that is confetti... the picture doesn't quite relate to
the post, but it is too darn cute not to include it!

I am not magical. My daughter is.

I'm not daft, of course I don't believe in Magic... At least not the Harry Potter sort (although I do long to live in a Harry Potter world,) And yet...

There is a special sort of magic in a young girl who has any number of reasons to doubt herself, but instead believes in herself with fierce and wild abandon...

My daughter speaks freely and often of her magic. It was ages ago she first informed me she has magic in her hands, like Elsa. This filled my heart with joy, since my beautiful baby could well feel very differently about her beautifully unique hands...

She has Ectrodactyly. In her case it is genetic. Her hands work wonderfully and we have yet to discover something her friends are doing with their hands that she can't. (Her teacher tells me she is better with scissors than her class mates actually. Poor kids, with all those extra fingers getting in the way...) But of course her hands LOOK different. That can be a hard thing for a kid, so I was delighted to hear that she has magic hands.

The other day in the car she suddenly said "My purple magic is gone Mom! I don't know what happened to it... my blue still works though." I lamented the loss of the purple and agreed that we were glad about the blue, (while having no idea what she was talking about. She had never specified color magic before...) Later that night she suddenly informed me that her purple magic was back. Whew, what a relief!

Sometimes when we are driving in the car she will say "Can you see those lights? That's my magic. See what I am doing with those lights?" I try to keep my eyes on the road while driving, so I haven't actually spotted her light magic, but she is quite confident in in. I don't really know the ins and outs of all her magics... but there is this one she has...

You see, I am perpetually finding glitter in my daughter's hair. Only, we don't have glitter at home, and they don't use it at school. She doesn't have clothes, books, or toys that are shedding glitter (and if she did I should find it elsewhere as well, her clothes, her face, her cereal bowl...and I don't.) The first time I spotted glitter while braiding her hair I brushed it off. Must have come from some school friend who was wearing an overly glittered shirt.

But it happened again.... and again.... sometimes it is silver, sometimes blue or green...One day I spluttered, "where is this glitter coming from?"

"It's my magic."

That calm and matter of fact response was all she had to say on the subject. Looking ahead at the road she will travel, I am glad she feels no need to explain herself... she seems to say, "This is me. I just am."

I must conclude she is right.

Monday, June 30, 2014

A Hard Day's Night

I don't know where they come from sometimes...
                                                               ....the tears

When I find myself in tears over an exchange I've had with my beloved child, I can rarely articulate why I am crying.

Tonight was a rough bedtime. Angel had had one meltdown after another all evening. I imagine there were some frustration/at-the-end-of-my-rope tears in there....

She was tired because I let her stay up too late last night, so there are probably a few guilt tears in the mix...

She flipped out one last time and I put her her crib (not terribly gently) and left the room while she hollered after me.
          ...tears of fear and bewilderment. How do we get to this place?

Once she calmed herself and the screaming stopped I went back in, stood at the crib and asked "Do you need a hug?"
           ...tears of regret

As I lifted her from the crib and went to sit in the chair with her she asked...

"You have to forgive me, or I have to forgive you?"
             ...tears of a fierce desperate love that sometimes threatens to overtake me
             ...and maybe some tears of appreciation that we have these
             conversations at all?

"Probably a little of both," I told her. "Your behavior was very bad... and I could have handled it better. Hopefully tomorrow we will both make better choices."
           ...some shame tears hidden in there, because I am the adult, and she is the 3 year old, so probably                 only one of us should be making bad choices.

"No," she tells me, as she lays limply on my chest. "I will fight all the time."

           ...tears of sorrow that her beautiful little heart is holding anger

"Then I guess we will have a lot of sad times..." I tell her.

She requests the song "Jesus Loves the Little Children" and she sings it with me.

           ...tears of joy that she seeks this comfort after hard times.

As I hold her tight and kiss her forehead I wonder what parts of this night will stay in her memory. I think back to my childhood and what I remember of my mother. I remember many many songs at my bedside. I know there were some very tearful nights as I begged for something or other that she did not relent to, but I think the songs and snuggles are the overarching theme to my memory. I hope it will be that way for Angel one day...

...That she will remember the desperate love over the desperate tears.

Saturday, May 3, 2014

Baby needs a new pair of legs

Some people have expressed interest in learning more about the process of getting prosthetics, so I thought I'd explain how it works for us.

To answer one question-- yes, they are outrageously expensive. We are lucky in that regard on two counts. One is that Angel has been treated at a wonderful hospital called Scottish Rite. You know how St Jude's commercials say no one is turned away for lack of finances? Scottish Rite is the same way. They provide prosthetics to children regardless of the family's ability to pay. The hospital has long been funded primarily by donations, and I encourage anyone looking for a good cause to donate there! Another lucky point for us is that Angel has Medicaid because she was a foster child. Medicaid is actually very good insurance if you qualify for it, so her prosthetics will not be a financial burden for us until she is 18. Once she is an adult she will no longer be treated at Scottish Rite Children's hospital, and will also no longer get Medicaid. I wonder if I should start a Go Fund Me campaign now to raise money for her adult prosthetics! The better they work the more they cost, and we are talking upwards of $100,000 per leg....The sad thing is that many insurance companies cover little if any of the most basic prosthetics. They seem to feel that a wheelchair is cheaper, and that legs are not a medical necessity. I am active on the Amputee Coalition facebook page and am appalled to see countless adults, even veterans, who struggle for years to get a set of legs! For now though, we count ourselves blessed to not have to worry about the financial aspect.

The process for fitting is that they make a cast of the residual limb (literally wrap it in plaster soaked gauze just like they would if you had broken the bone.)

April 2012-- 19 months

Then the take the mold they made and pour plaster into it to create a replica of the limb that they can work with. There are a variety of materials they then use to create the socket-- that is the part that the residual limb will fit snuggly into.

The picture above is from Angel's second set of sockets which were made when she was about 19 months. She got her first set of legs when she was 15 months old. How often a child will need new ones can vary, but you can expect about every year to year and a half. They do grow out of sockets, but also kids tend to be very rough on their prosthetics, so sometimes a set that still fits just falls apart. I will show a picture of that later....

Angel's first set were a type of prosthetics called "stubbies" which means they are just a bit longer than the residual limb itself, so they are mainly like shoes for her little nubs and it feels mostly like when she is just walking on her nubs at home. It feels more natural to her, rather than being high up on something that isn't part of her (like walking on stilts might feel to us.)

 December 2011-- 15 months

 Her stubby type looks a lot like hooves, which made for the ideal Halloween costume. Many people were amazed by her cow costume, and I had more than one person inquire how I managed to "shove her feet down in there"

October 2012-- 25 months

So she outgrew her first set of sockets in about 4 months... We went back up to Scottish Rite to get fitted for a new socket. This time they made her a set of stubbies and also a set of slightly taller legs that had feet on the end. Since we already refer to her prosthetics as shoes, we were now able to put little sneakers on to her big shoes...

These were only about 2 inches longer than the stubbies, and we got them in April of 2012. She took her first independent steps in June, quite by accident (trying to follow me out the door when I dropped her off at daycare,) and she was so startled that she became more timid about trying for awhile. It was right around Halloween that she suddenly got the hang of it and began walking independently. She wore her stubbies with her costume and from then on we began to refer to them as her costume shoes.

For awhile I pretty much retired her costume shoes so she would have to learn to maneuver in the tall shoes. Even those two little inches make a big difference in maneuvering, and these are also a lot heavier because they have metal in the ankles and are filled with something at the bottom of the sockets. She did pretty well in them over the next year, but they did not work well for climbing around on playgrounds. One reason is that the foot has no give, so when she tries to go up a ladder it gets caught and she can't just flex the ankle like we would.

In August we went back to Scottish Rite to get a new type of shoes. It had been 16 months since we got her last set. Again we got a new set of stubbies (costume shoes) but we also got her new "Bendy Shoes." These are quite tall because they have an articulated knee. Angel was doing so great on her other shoes that I felt she was ready for knees. I did not realize how tall they would be, but apparently the knee mechanism requires a certain amount of room, so these legs are apparently as short as they can be with knees, but they make Angel about the size of a 5 year old (she was not yet 3 when she got them.)

It is quite tricky to trigger the knee to bend and requires putting pressure on the toe of the foot, then sort of jerking the leg forward at the hip.

 Getting the hang of it takes a lot of practice and effort, and it turns out Angel is really not motivated to do that at this point. For one thing, being up so high scares her (and me actually because if she fell with the legs straight she could well break her arm trying to catch herself.) I have never sent her to school in them, she is still too scared of them, and very unsteady. The video is from her first day with them. They were novel then, but since that day she really hasn't wanted to practice with these shoes. I can see her point-- why work at something so scary when what I have is working perfectly fine? (It's not broke, quit trying to fix it mom!) so I have not pushed her with the bendy shoes.

She continued to go to school in her tall shoes, but as her class got older and spent more active time on the big kid playground we found the costume shoes worked much better for letting her play independently, and I relented to letting her wear them to school everyday because I feel that at the age of three, being able to run and climb comfortably is really the more important issue over the cosmetics of feet and height, and I found I worried less about her safety knowing she was in the shorter easier ones.

For a time I still had her wear her "tall shoes" (meaning the middle sized ones, not the bendy ones) to church on Sundays because I did not want her to lose the feel for them. However, she REALLY prefers the shorter lighter weight costume shoes and it soon became a battle. One morning she dissolved into sobs on the floor because she did not want to wear the tall shoes that make everything harder. Next thing I knew I was in tears too, hugging her and feeling so sad because she really shouldn't have to beg to wear the easy legs. What legs to wear shouldn't be an issue for a child. I had a moment of "why does my child have to suffer like this? Why can't we just head out the door like other kids do?" But it didn't last long. So many kids, including so many that we know, have far greater struggles. This is a relatively small hurdle, so I reassessed the situation and decided that the goal was for her to be comfortably mobile. If she can happily achieve that in her costume shoes, I will not stand in her way!

So she began to wear the costume shoes full time. It was her 3rd set of costume shoes, and wearing them full time meant she wore the tread off in a few months, and soon after all the cork was worn off as well, so we went back to wearing her old (second set)

3rd set on the right, 2nd set we went back to on the left

There are a number of suspension systems for prosthetics (meaning how you make it attach to the limb) and Scottish Rite prefers the belt system for young kids. The black part above is a separate belt type thing that holds the legs on by attaching around Angel's waist. Once we potty trained this became VERY inconvenient because we have to take them off every time she goes potty, and then have to try to wrangle them back on without sitting her down on the filthy floor of whatever restroom we are in. I end up trying to hold the 30lb Angel with one arm while using the other hand to try to get her clothes back on before setting the shoes up on the floor and trying to set her into them, balance everything, and velcro the belt closed. I have managed to drop her pants into the toilet during this little exercise. It got old, so I began looking into other suspension systems. I also looked into finding a provider closer to home because Scottish Rite is several hours away, and the process of getting new legs requires several visits....

We are now getting a new set of shoes from a Hanger provider much closer to home. Her Medicaid will be covering this. Next week will be our 4th visit there, trying out the 2nd set of test sockets for fit. The first set was way too small. If this test set works, we will go back again in a few weeks for the finished product. These will be very short and light, but they will have little feet instead of hooves. By leaving out metal parts we can make them lighter, and having feet will mean being able to put new tennis shoes on rather than wearing out the feet themselves. The best part is they won't use a belt to attach so we won't have to take them off to go potty! I look forward to it, but Angel will probably have a hard time adjusting because they will use a silicone liner that is very tight (like a pressure sock) and she is used to her very loose costume shoes. I imagine the squeezy tight liners will annoy her for awhile, but I hope that having the leg stay put rather than twisting around in the belt, as the current ones do, might make up for it. Also, she tends to come home with her legs full of sand from the playground and I really worry about this. The new tight liners should keep sand out, which could be very important to skin integrity.

One thing that prosthetic wearers have to really beware of is skin breakdown. You know how you can get a blister on your heel or toe if the shoe is rubbing? Think about how a prosthetic socket is always in contact with the skin. One tries to insure that the contact remains uniform throughout, but if one spot is tighter or rubs more you can quickly get a blister. The skin on your feet is very different than the skin on your leg, and it holds up better. Getting a wound on the residual limb can be a real problem. They can get infected readily, and the person generally needs to not wear the prosthetic until the wound is healed. This can be a real problem! Try going 2 weeks without a leg sometimes... I can only imagine trying to get Angel to master crutches for two weeks off one leg while a wound heals... Nope, instead I would be carrying her everywhere (not so good on my back) or she would be crawling (not so good on her hands, plus it can feel rather undignified....) So far we have been very lucky and have not had any skin problems. I try to be conservative on the amount of time she spends in her shoes, taking them off for naps and when she is hanging around the house, and sometimes even while riding in the car. She herself will pull them off and announce that her "nubbies need to rest." I'm not really sure how that will work when she is older and is in school full time, but we will just wait and see what works best for her as things come.

Wednesday, April 16, 2014

Magnificent One

                                                you are Magnificent....

Can we teach our children a lesson that we have never learned? That is a question that has plagued me since my magnificent child was placed into my certifiably inept hands...

Some people are a bit startled upon first glimpsing a person with physical differences. I imagine it is particularly hard for new parents who first learn of their child's unique body at the moment of his birth. I never experienced that shock with Angel; I have only ever known her exactly as she is, and I WANTED her from the moment I laid eyes on her. In my eyes she is true perfection.

But that doesn't mean that parenting a child with physical differences is never hard. For me the struggle with her differences lies merely in anticipating the pain they may cause her later in life as she comes to fully understand that there even are differences. At three and a half she does not seem to be quite aware that there is anything particularly unusual about her, though several children that we don't know have done their best to make her aware of it in various public settings...

She may be perfect in my eyes, but it is her eyes that matter. What will they see? As she gets older and becomes more aware of the looks and comments coming from strangers, will she grow to hate her body? What voice will resonate loudest in her ears? 
....the voices of strangers saying, "that is weird"?
....the ever present whisper of her mother telling her, "you are magnificent"?

I struggle with figuring out how best to lead, guide, and teach her to truly know her own value and worth in this world. Am I qualified to teach something I never really learned myself? I worry constantly that I am bungling the lesson. I can't seem to help but constantly declare "you are so CUTE!" It bursts from my mouth in astonishment many times a day. I just can't wrap my mind around how anyone can be so astonishingly adorable! But what if her mind translates that to mean that appearance is terribly important? Am I accidentally sending the message that I love her because she is cute? Will braces and acne and awkward teen years yank away her knowledge that she is loved and lovable? Of will it be done by a child who hesitates to take Angel's unique hand in their own during a game of Red Rover?

I hated my own body for years and years, though the only thing that made me stand out in a crowd was that I am very short. And yet I had no appreciation for the remarkable machine that my body is, for the healthy gift that it has always been. I was deeply struck by a point in the last Harry Potter book when Harry is facing what he believes will be certain death, and the thought comes to him... 

"why had he never appreciated what a miracle he was? Brain and nerve and bounding heart..."
And why did I not appreciate that miracle for so much of my lifetime? I feel downright ashamed now about the fact that I truly HATED my body for most of my life! It was not tall enough or thin enough. As a teenager I actually researched the possibility of excruciating and expensive limb lengthening procedures to add height to my 5'0" frame! It seems so ludicrous now to have obsessed so much over so minor a detail. Though no doctor has ever considered me overweight, I have in the past embarked on some mad diets that went way to far.

But I feel pretty confident that I will never again hate my body the way I once did, for I now see the true beauty in the design; the remarkably artful machines that all bodies are, in whatever form they take. That is not to say that fleeting thoughts of desired changes to my body don't crop up now and then, but any time the notion of wishing my body were anything other than what it is crosses my mind for even a moment, I think of my Angel girl. I remember how I yearn for her to know with utter certainty that she is 100% magnificent exactly as she is, and I realize that means that I must be as well.

A letter to my Angel dove...

Most Precious Girl,     
Moment after moment I am in awe of you! Of how beautiful you are, how cute, how funny and clever, how sweet and charming…it does not even seem possible that one baby could get such a HUGE share of these traits. I thought to myself the other day that the insane amount of adorableness you contain makes you a freak of nature. Then it dawned on me that someday, you may hear that very term thrown at you in an ugly way. My heart dropped as I realized that you might never know how MAGNIFICENT a creation you are.              
Few people can ever truly accept and recognize their own value and virtue. But will you, with your unique physique, someday be prone to under-estimating your own priceless value even more than most people sell themselves short? That thought boggles my mind. EVERYWHERE you go people adore you. The nurses at the pediatrician’s office pour into the hallway to see you, the nursery workers at church fawn over you… you had an entire CPS office adoringly watching you through the two-way mirror while you played at a visit! The ECI workers who came to evaluate you could not stop exclaiming “You are so stinking CUTE!” I know lip service, and this isn't it! They don't say these things for my benefit; they say them because they, like me, are astonished at the incredibly precious gem before them.
        All mothers think their children are beautiful.... Perhaps it is some evolutionary safeguard having to do with passing on one’s genes and continuing the species. Maybe it is tied to hormones and pheromones and the process of giving birth and creating a life. But how much credence can you really give to the opinion of someone admiring her own handy work?
        But of course, none of that applies here! You are not MY magnificent creation! My own genes are not displayed before me. Your priceless value does not in any way reflect or add weight to my own. I hope you will appreciate that this gives my love for and awe of you all the more credit, for it is entirely YOU (and not the part of you that is me) that I adore!


Sunday, April 13, 2014

Love is a Battlefield (of flowers)-- my messy beautiful warrior life

All parenting is fraught with stress and worry. The categories of "difficult parenting" are truly endless. I know that I am in a very ideal situation compared to so many families out there! 

And yet....
There are those moments when I am brought to the brink of self-doubt, find myself choking on tears, and wondering why it must all be SO HARD.

We will all face many challenges on our parenting journeys... some of my own I have no way to for see, but others I know are waiting in the shadows....

One will be helping Angel navigate the world of being a child with obvious physical differences. 
One will be helping her figure out how being adopted fits into her view of the world and her own place in it.
One will be doing those things all. by. myself.

In adopting my daughter I entered single-parenthood differently than most do, in that I knew exactly what I was getting into and made the conscious choice to become a single parent, without experiencing any shock at finding myself in that situation, nor any sort of loss of a parenting partner. I count myself lucky for those reasons. 

But there have been a handful of times when I felt the weight of being a single parent. I have posted on Facebook about it a few times in the past, and have included those posts here because they were written in the very midst of those "how will I ever manage this" moments, and so they are better witnesses to that emotion than I can be right now, on an evening when things have run smoothly...

October 2012-- Angel was just over 2 years old
For the most part it really isn't that hard, but every now and then, being a single parent gets very heavy for a few minutes. Like the night when you are really tired, and are in pain because you stepped on the baby's toy on the hard wood floor, while carrying her, and your foot went right out from under you and you fell hard onto your knees and elbows trying your best not to crush the baby under you. And you were taking her to time out at the time, because she battled you when you would not let her wrap the toy's cord around her neck...but now you are so concerned with making sure she is okay from the fall, that time out doesn't happen. And she is fine, but you are bruised, so you limp your way through bath time, and then she wants to fight you while you are brushing her teeth (which she is usually really good about,) and you just want to say to your spouse "I've had it, you have got to do bedtime routine tonight." But you can't, because there is no one else. It is all you. And you can't just skip bedtime routine, because that wouldn't be fair to her, and she wouldn't understand why, so you manage to read one book instead of three, which still isn't fair to her, so you just come away feeling like a failure, and you turn off the light and hug her tight, and try to sing her songs for her, and you tell her over and over that you love her so very much, and in your mind you hope that she doesn't think your tears mean differently. (The tears that you managed to hold onto until the light was out, hoping to spare her, but for some reason she reached up to feel your face in the dark, which she never does, so now she knows.) That is when being a single parent is kind of hard

February 2014-- Angel is three and a half
You know those nights when you are stared in the face by the fact that you don't have a clue what you are doing... that you are definitely not qualified to build an actual person... that you are surely damaging this little package of beauty and light that God put into your hands, and that there is no ethics committee, no board of directors to make sure everything is being done right. It is on those nights that being a single parent is hard because there is not even one sounding board that is right there in the trenches with you to help you determine when to push and when to stop, when to excuse and when to insist, what is fair and what is harsh.... I was at some friends' home one night when their toddler melted down, and I watched one parent turn to the other and say "how do you want to play it?" And I thought "OH! THAT'S the thing my kid doesn't have! She doesn't get a second opinion." The hardest thing is knowing that I am all she's got, and that is far less than she deserves.

At times it is hard to juggle all the parenting responsibilities on my own, but for the most part I lament single parenting not for the trials I face, but for the cushion my child misses out on. There are many times when my capacity for patience and gentle guidance is maxed out and it would be best for my child to be handled by someone who has a few reserves left, but there is no pinch hitter at our house. My daughter gets left with the last dregs me. We just do the best we can, and I take my guilty anguish to my therapist, and some day my daughter can take her resentment over the exasperated parenting she received to her therapist (got to keep those people employed and off the streets after all.)

We are creating jobs over here people.

This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!
Click Here

Tuesday, April 1, 2014

A Mother's Dilemma

Which is the priority-- physical safety, or emotional health?

This is the complex conundrum I am struggling with at the moment. It takes some explaining...

When I arrived to get Angel from school today the kids had just come in from the playground. Angel's hair was wet, I couldn't figure out why she was so much sweatier than the other kids (she does tend to run hot, but still...)

An older child I did not know, an after-school-care kid, was sitting next to Angel on the couch and asked me "Are you her mom?" I said yes and she sort of stammered "why does she...." and seemed to be gesturing at Angel's "shoes." Angel prefers to wear her little stubbie style prosthetics which we call her costume shoes because she wore them with her cow costume at Halloween. They were ideal for that because they resemble nothing so much as little hooves.

I understand that a little "Pan" child is a startling sight for most people, so I am happy to explain to kids that these are just her special shoes, as I did in this instance with this little girl. But she pressed on, asking, "but why does she have to be different?" I answered "well, everyone is a little different from each other, and this is just the way she is." The child then pointed out "She sure did get sweaty...." At this point Angel hopped down and ran off to play as I called after her that we needed to go grocery shopping, and the other child quizzed me about what I planned to buy from the grocery store.

A few minutes later I noticed Angel's bike helmet on the table, and suddenly realized why her hair was so sweaty. Today I had brought a helmet for the first time and had asked that she wear it when riding the bikes on the playground. For those who have not witnessed the results of a head injury firsthand I may seem a bit paranoid, but I am a real stickler for wearing helmets whenever a person is on anything with wheels. We do this religiously at home and I had just realized the week before that at school Angel rides bikes on the playground without a helmet. Okay, so they aren't exactly bikes so much as tricycles, but there is a bit more to it. You see, with out knees Angel can't just sit on a trike and ride it around like any other kid. Honestly, I don't think I'd worry much about helmets if that is what she were doing. However, since she can't pedal the trikes herself she hops on the back and clings on for dear life while some other three year old madly drives the thing.

(Yes, my resourceful munchkin has somehow gotten all the other kids to chauffeur her around the playground, but that is part of a different story...)

But you know preschool drivers these days. they just aren't reliable! With Angel clinging to the back of a tricycle it seems entirely possible that she will fall off, or that the weight of both kids will flip the thing as it takes a corner and a wheel gets caught in a sandy patch.

My mom used to have a couple sayings about the hassle of things like wearing seat belts and helmets and all the other things we do to prevent those "it's-never-happened-before-so-what's-the-big-deal" catastrophes...

"It only takes one" and...

"It's not how likely, but how bad."

That's the thing that makes me crazy when I see kids riding their bikes, in the STREET no less, without helmets on. Just because they've never had a bad crash before doesn't mean they never will, and it only takes ONE to drastically alter the course of their life and yours as well. Go visit a brain injury rehab facility if you think I am exaggerating. Brains are the least mend-able part of your body, and smacking your head is not like breaking your arm. I have seen this play out and I know the full extent of what I am trying to avoid! (I really am not a helicopter mother, I'd be happy to let her have adventures that lead to a broken bone that isn't in her spine or skull. I'll have to tell you about how I already let her break her leg...)

So I was chatting with the teacher and I asked if Angel had the helmet on the WHOLE time they were out on the playground. Yes. I explained that she only needs to wear it when she is on the bikes, and can take it off when she is doing other things. The teacher indicated that, since kids are back and forth to different areas, that would mean helping her with it on and off, on and off, the whole time. I got the feeling that this was considered too much hassle, it is easier to just make her wear it the whole recess time.

When we got into the car Angel's hair was still quite wet, and I told her that she only has to wear the helmet when she is on the bikes. She said "but when I was not on the bike I asked teacher to take it off and she said 'no.'" I was feeling pretty bad about this, imagining my poor child running around on the playground for an hour with a bike helmet on the whole time, and suddenly the words of that other child took on a new meaning...

"But why does she have to be different?"

Perhaps this child was not referring to Angel's unique shoes at all, perhaps she wanted to know why my angel girl was forced to wear a helmet at recess when no one else was.

And here is where my true dilemma begins....

 Do I want to make Angel stand out more than she already does? Do I want her to not only be the kid with the "weird" shoes, but to also be the kid who has to wear a helmet just to walk around the playground?

NO! I don't want to subject her to anymore "one-of-these-things-is-not-like-the-others" than chance has already destined her to.

But do I want my magnificently clever funny child to struggle to relearn how to piece words together? Do I want to see her morph into someone who looks just like my kid but who has a completely different personality?

NO! I don't want her life's journey to be detoured by a head injury.

If I thought that I could count on the teachers to really monitor where she is on the playground, to jump up and get the helmet any time she heads for a bike, and to then promptly remove it when she moves on to the next playground thing, I would feel pretty good about a middle ground. However, I suspect that is asking too much of people who are paid too little to put up with the energy drain of 8-10 small people ALL DAY LONG.

I suspect this is an all or nothing thing here. Either she wears the helmet the whole time she is on the playground, or not at all.

So what is a mother to do?

Added 4/23/14
* I want to clarify that I do NOT feel the teachers are not doing enough in this situation! Having worked in childcare myself, and indeed knowing how draining it is to spend the day with one small person who is in constant need of attention, I cannot even imagine how the teachers do it all day everyday with 10-15 kids at a time! I do not expect them to be on helmet duty on the playground, which is why I have a dilemma in the first place. Either Angel will need to go without the helmet, or will need to wear it the whole time.... Although I am intrigued by this idea some have mentioned of modifying the straps so Angel can manage it herself. I have actually been thinking of getting several helmets to leave at the school so that any kid can use one (at this preschool age kids still often think it is kind of fun to wear a helmet, so the kids may actually opt to if given the choice.)

Saturday, March 22, 2014

The Long Story (but the short version of it)

Seven fingers, seven toes, and absolutely perfect. The first time I laid eyes on her I knew she was my baby.

Except that she wasn’t.

She was five months old when she arrived at my 33rd birthday party with her 19 year old mother who had once been the foster child of a friend of mine. Her lower legs were shortened because they were both missing the Tibia. Both feet were severely clubbed and one was only half formed. Both hands were missing fingers and had cleft palms. These phenomena were the result of a genetic condition called Tibial Aplasia Ectrodactyly. She was the most beautiful baby I had ever seen and I wanted her instantly and desperately.

Her mother had lived with my friend during her pregnancy. I remembered the ultrasound that showed abnormalities in the baby’s limbs. At the time the young mom, "C", planned on adoption for her child but had later changed her mind. She was now 19 with a two year old boy and a special needs baby, fresh out of foster care herself and still battling mental instability.

I declared that I would call the baby "Angel" because I felt her given name did not suit her. I said that surely her mother had brought her here to be my birthday present. "C" thought that was pretty funny and when it came time for a picture with the cake, she suggested we get my "present" in the picture too. 

I started taking the baby for a few hours whenever I could and "C" was happy to have me do it. It was clear that she was not prepared to be such a young mother. I started the process to get licensed as a foster parent, suspecting that it would not be long before these children would end up in the system.

There was a lot of upheaval over the next 10 months and the kids moved around a good bit. For two months Angel lived with me. "C" had decided she could not handle a special needs child and we were talking adoption. Then she changed her mind and took the kids and moved in with a friend two hours away. That was a VERY hard time that I will write about later (mostly I try not to think about those 4 months.) Angel was living in a single wide trailer with three adults and three other children, one of whom had special needs far more severe than her own.

I knew that "C" was not stable and I continued to work on my foster licensing in the hopes that CPS would rescue the children. Just before her first birthday Angel underwent a planned amputation at Scottish Rite Hospital. The free hospital specializing in orthopedic issues had determined that Angel’s best chances of walking would be through amputation of her deformed lower limbs, and later being fitted with prosthetic legs. I went to the hospital (four hours away) to see her the day after her surgery. Her resilience amazed me! She played in the hospital crib and you would never have imagined that she was one day post-surgery, much less so complex a surgery as a double amputation! (Technically it was a disarticulation since they went through the knee and no bone was cut.)

I got the call Sunday afternoon from the caseworker asking me to go get Angel from a town 2 hours away, (the place where I picked her up was the 7th place she had lived since I had met her 10 months before,) and then go with her for a several day stay at the hospital to get her new prosthetic legs and begin therapy with them. It was about 5pm on December 18th, and a very dear friend really answered the call for us! I was overjoyed, but terrified too, and felt too jittery to drive the two hours to get Angel that very night (her appointment at the hospital was for the very next day.) My friend literally dropped everything and drove me to get my baby girl! 

Angel was asleep when we got there. The lady brought her out to me and went back in to gather her things. I held the sleeping baby, marveling at the wonder of having her in my arms again. She stirred and lifted her head and looked up at me. She had seen me two times in the last four months, and being as how I was not expected to be there in that place in the dead of night, I expected a wail. Instead she looked as me and seemed to say "oh, it's you..." and put her head back down on my shoulder and went back to sleep. 

She slept in the car as we drove, but at one point when I looked back at her I found her quietly staring back at me. She was 15 months old, in a strange car in the middle of the night with one stranger and one person she vaguely remembered from somewhere. While I was glad she didn't set up a panicked sob, it also worried me a bit because it did not seem like the response one should expect from a baby in that situation. The fact that this sudden and bizarre occurrence did not alarm her meant there has been so many sudden bizarre occurrences in her life that such a thing was just to be expected. It was clear this was not the response of a child who has formed a secure attachment to her mother.

The very next day I drove us both 4 hours to the specialized hospital that made her prosthetics. She was still in the pajamas she was wearing when I picked her up the night before. They did send some clothes and toys with her, but everything smelled strongly of cigarettes and I had put all the clothes in the wash and the toys were airing out in the garage.

 It was a tumultuous exhausting time. I still did not know how long I would keep her, and CPS wasn’t really clear on that either. Although they were not allowing "C" to see the kids, they did not yet have a court order to formally remove them from her custody. I was afraid that either bio parent might show up at the hospital and try to take her. I knew very little of the father other than having been told I had reason to be afraid of him. 

Would I be taking her back to that shelter placement I got her from after her visit to the hospital, or would I be keeping her for Christmas and then giving her back? Or would they let her stay with me though I was not yet fully licensed as a foster parent? The caseworker basically said "I’ll get back to you on that." 

I should mention here that a children's hospital is actually a very cheerful place at Christmas time, at least this one is. (They made it such a fun atmosphere that I wanted to book a stay for the next Christmas too, but apparently it doesn't work that way...)

Finally I heard that the court was officially removing the children. Because of Angel’s special needs and her half brother’s own behavioral issues (he was later diagnosed with bipolar disorder) the court was willing to split them up, though they usually prefer to keep siblings together. CPS put 15 month old Angel with me as a kinship placement until my license was finalized, and nearly 3 year old brother went to a home with more experience handling his needs. It was a tremendous relief to know that "C" would no longer have the power to simply change her mind and take Angel away again as she had before. It would now be up to a judge to decide whether "C" was ready to have her back. Angel’s father, "B", also planned to prove his own competence to have custody of her. The two parents were not together and had a great deal of animosity towards each other at that point. Though they each wanted her back for themselves, each was clear that they would rather she be with me than go with the other parent.

I tried to put worries about the future out of my mind and concentrate on raising the baby girl who seemed to have changed a lot in the four months she’d been gone. Previously she had been a very friendly baby who was content to go to anyone, or to sit and entertain herself with toys for ages at a time. Now she was clingy and fearful and wanted to have a hold on me at all times. My heart broke wondering what experiences had brought about these changes.

The next year was a whirlwind of growth and change! Angel did not like being handed over for visits with her parents, but those did not last very long. After two months CPS stopped visitation for several reasons. Over the course of the next year neither parent was able to follow the court’s instructions or take the steps necessary to get the kids back, so less than 13 months after she was placed with me, our adoption was finalized. 


People often remark how lucky Angel is to have been adopted, as though I have somehow "saved" her. They simply don’t understand the situation at all. She is the chosen one. I am the lucky one. I wanted her the moment I laid eyes on her, and I thank God every day for allowing me to be her mother. She has such a light in her and is such a bright spirit! Her strength amazes me every day.