Thursday, April 28, 2005

When Life Gets Good...

You know, some days I forget that I'm the mom to an immunesuppressed kiddo. Life is good in our house. The only reminder of the transplant that is ALWAYS there for me is the ONE medicine Anthony takes. That's right. Fourteen months post transplant, Anthony is only on his Prograf.
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The other reminder is his cute scar. I love that scar. I kiss it every night. If it were not for that scar, my son wouldn't be here. That scar means he had a transplant, and that the transplant saved his life. What could be a better reminder than that scar? I know that there are parents who rub their child's scar vigorously with Mederma. I stopped doing that in June of last year. Why? Because I want that scar there. I want to see that scar every day. It's not a bad looking deal, either. It's just there, and it's a light peachy color. Ask Anthony where his belly button is, and he'll show you (albeit reluctantly). Ask him where his scar is, and he'll pull that shirt up so high, you think he might choke on it. He loves showing that off, and I want it to stay that way.

Anyway, back to my original reason behind this post. Life is good. Anthony is healthy. Why am I sad? Believe me, 98 days in Omaha, and then a two day (at least) stay at the local Children's hospital here in Louisiana from August through December 2004 was enough for me. I'm not sad that Anthony is healthy and doesn't need that seemingly endless run of sedation, biopsies, NG tubes and eating therapy.

I do want, though, that special bonding we had. That when he didn't feel well, he'd crawl into Mommy's lap and snuggle. That he couldn't go to sleep at night unless Mommy was there holding him (or crawling into that damned hospital bed with him). I wish he could be healthy and still want Mommy all the time. At 17 months, Anthony has learned that he can be independent. He doesn't need Mommy (or Daddy) to read a book to him...he can look at the pictures alone. He doesn't need Mommy to feed him...he's really great with the hand to mouth coordination. He doesn't need to be rocked to sleep...I just put him in bed at 8:00 every night and he's asleep within minutes. Heck, he's even showing interest in potty training!

And then, there it is...always in the back of my long can this last? Will he go into rejection again? Will he eventually need another transplant?

I have a hard time sometimes, trying to separate my "Anthony thoughts" from my "normal thoughts". And I find myself not being able to concentrate on my "normal thoughts". Anthony's better...when will his mommy be?

Monday, April 25, 2005

Happiness is a Journey

Happiness is a journey, not a destination

For a long time it seemed to me that life was about to begin-real life but there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. at last it dawned on me that these obstacles were my life this perspective has helped me to see there is no way to happiness. happiness is the way. so treasuer every moment you have and remember that time waits for no one.

I wish I could say I wrote that but I didn't. Maybe some of you have even read it before. When I read it on the magnet I bought this weekend it just really hit home for me. I was holding back in my life and trying to find happiness. Well, now I know HAPPINESS IS A JOURNEY and I am LOVING my journey through LIFE!

liver transplant recipient

Sunday, April 24, 2005

On Hunkering

I spent today in a training program for parents of kids with Down syndrome who volunteer to give support to new parents of babies with Down syndrome. It was a good training session and is a program that I'm very excited about.

But it was also a long day of hearing about kids with Down syndrome and looking at their pictures. It was a long day of listening to - and sharing! - the difficulties that their parents face. It was a long day and I'm exhausted.
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Before Ellie was even born, people encouraged me to go to a local Down syndrome playgroup. When Ellie was about 5 months old, I finally screwed up enough courage to go. I figured that if I went once, I could say I'd tried it and it wasn't for me, quieting the well-meaning but pushy folks.

The playgroup was worse than I'd feared; there were older kids there. Some of them were seriously "involved," as they say, and a couple had obvious behavioral issues. I escaped at a near run after an hour and Ellie and I both sobbed all the way home.

A few months later I gathered my courage and tried again. This time I loved it. There are three little blond-haired, blue-eyed, beautiful babies all born within a week of each other, all doing wonderfully. Ellie looks like a triplet. I now attend the playgroup regularly and value it highly, but it took me until Ellie was nearly a year old before I was ready.

When I shared my feelings at the training this morning, a more experienced volunteer cautioned us that this reaction is normal. Some new parents grasp for contact with other parents of kids with Down syndrome while some new parents need to hunker down for a while.

I like that. I do need to hunker down from time to time. When I hunker down, I focus on my child. I love her truly, madly, deeply. She is so precious to me. She is my child, first and foremost. Thinking about her Down syndrome gets in the way of that love sometimes, and I need to push it aside, hunker down in my little bunker with my baby, and focus on the little girl I know so well and love so dearly.

Saturday, April 16, 2005

It's OK

I have the spastic diplegia form of cerebral palsy. I've had it all my life and I always will have it. And I've had to use a wheelchair to a certain extent the whole time. But that's ok.
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It might not be curable but then if I was offered a cure I would more than likely turn it down. If I was offered the chance to have never had it I would definitely turn it down. I have had so many experience that I wouldn't have had if it wasn't for my cp and I've met some great people I wouldn't have otherwise (because they are doctors, nurses, carers, physios etc). Plain and simple I wouldn't be the Emma who sits here writing this if I wasn't disabled.

Actually if I had the chance to have had it but not to have it any more I would probably say "no thanks I'm fine as I am." Because even though I might have had the odd day as I was growing up where I hated it, it's never been that much of a big deal.

Having CP isn’t a problem for me. At times it is an annoyance, a difficulty I could do with out. But most of the time being disabled and perhaps having CP in particular (having no experience on a personal level with having a long term illness or being disabled through other circumstances I’m not really qualified to know those things) is something which I don’t even consciously acknowledge. It’s simply a part of my life, but it doesn’t rule my life. That's just because I refuse to let it.

If I woke up tomorrow and I could walk, if I woke up and I no longer had my comfortable little flat in Holland but instead had one in Italy I would freak out and there's no way I could cope. Not having CP might make me "normal" but really there is no such thing as normal just average. And average is boring.

Life with CP. It's not bad, it's not difficult, it's not something which is hard or painful for me and it's not something I need pity for. It just is.

And it really is ok.

that said... if someone offered to swop with me and have my CP for one day I would take them up on it... It's always nice to see how the other half lives!


Friday, April 15, 2005

Learning to Love...

I guess I had the inward belief (even if my MIND knew better!) that parental love was something that would come the beating of my heart.
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We have three beautiful children…two adopted from China and one from Taiwan. The eldest is gifted, the youngest is as normal as rain and joyous as a Spring sunrise, and the middle child is my mystery. The oldest and the youngest became mine when they were still tiny infants. They were planned for...longed for...sought after. Then came our middle child. He was a crisis adoption...not planned for...not longed for...not even heard of until we were ‘finished’ building our family. He did not arrive as a tiny infant. He arrived as a six year old with profound challenges. As an infant, he sustained a cervical fracture which left him temporarily quadriplegic. To the doctors’ amazement, he regained motor function. He also survived a severe head injury. He still carries the scars in his scalp from the burr holes drilled through his skull to relieve the pressure of his brain’s swelling. His skull will always be pressed in behind his right ear...its asymmetry bearing silent witness to his injury so many years ago. What are not visible are the tiny scars scattered throughout most of his brain...small ‘dead’ areas that make speaking or correctly mimicking sound an excruciating challenge to him and remembering a slippery skill. Nor can he focus. The harder he tries to concentrate the more spastic and jittery and ‘spacey’ and distracted he becomes. After seeing the results of the CT scan of his head, our family doctor told us that the ‘lacunar strokes’ he had suffered most likely left their mark on areas of cognition, language, and memory...that often such strokes in elderly patients are misinterpreted as early signs of Alzheimer’s.

We did not enter this adoption blindly. We entered it prayerfully and with our eyes wide open. We had not sought our middle child out...but we believed then and believe now that he was our child, chosen for us. He IS my child...became my child, officially, nine months ago. It has been a hard adjustment, though. I had anticipated struggles in some areas that never materialized...his inability to put down solid roots in our family and open his heart to us. He had been bounced from place to place and suffered so much rejection and neglect (not to mention outright physical abuse through infancy) that I was braced for reactive attachment disorder. That is not my son, though. He is a tender-hearted, empathetic, loving child. What I was NOT braced for was an ‘attachment disorder’ of my own heart...

With my ‘mind’ I know intellectually that love grows over time and that instant bonding is not necessarily reality...that sometimes bonding is a gradual, elusive process...I know that intellectually, but when faced with the reality of it in my own heart, I cringe with guilt and self-recrimination.

In the beginning, this child became a wedge in my own rock solid marriage. My husband and I each had very strong (and very conflicting) opinions about how to relate to our new son. My naturally quiet, gentle, patient husband turned into (what seemed to me) a critical tyrant...berating the child (the only thing he actually seems to respond to) every waking moment over his failures to measure up to our family’s standards of conduct. Truly, this child did come to us lacking competence in even the most basic of self-care skills. We had to teach him how to LOOK where he was voiding...rather than spraying urine all over the bathroom as he bounced around and twisted in crazed distractibility as he would stand at the toilet. We had to teach his to WIPE himself after a BM. We had to teach him how to wipe up his bathroom messes. We had to teach him how to dress himself. We had to teach him how to use silverware, not scatter his food everywhere, not grab food off of other people’s plates…etc. We STILL struggle with teaching him to LOOK at what he is doing. If he is voiding, he looks everywhere EXCEPT at the toilet...if he is reaching for his glass at the dinner table, he will invariably have his head twisted the exact OPPOSITE direction of the path of his hand to the, nine times out of ten, his hand clumsily knocks over his glass instead of grasping it competently. At school, he fought other children...knock down, drag out fist fights. He would run away during recess and roam the neighborhood. He would walk out of class when the teacher wasn’t looking and roam the halls. He thought spitting on someone was a perfectly acceptable way of getting their attention. He reserved this for the people that he LIKED! He had no sense of personal boundaries. If he liked another child’s shirt, he would run up to within mere inches of the child and shove the child’s chest with the flat of his palm in his excitement over the illustration on the child’s shirt and in his desire to communicate (albeit unintelligibly--be the words Chinese or English) with the child about it. (Speaking as much Chinese as he does, I know that his spoken English has now surpassed his previous ability to speak in his birth language...but he still speaks only in a single words (not even phrases) and has atrocious pronunciation.) I say all this, only to explain that his entry into our lives was a stressful event. It took a LOT of readjustment between my husband and I to find our balance with each other again. We finally have. But, I think we are still struggling with finding our balance with our son.

When I write out what he was like when he joined our family, I see how FAR he has come in nine months. He doesn’t thumb his nose at authority anymore. He doesn’t run away from the playground or the classroom. He doesn’t hit other children anymore. He stands in line, keeping his hands to himself and he listens to his teachers. He dresses himself. He finally learned how to line his socks up correctly over his heel and toes and which shoe to put on which foot and how to zip his coat and his jeans….and how to pull his shirt over his head. He puts his clothes away….pj’s under his pillow and dirty clothes in the hamper. He cleans his own room. He can drink from a regular glass without drowning us all. He can eat without putting the handle of his utensil into the food...or spreading food on the table cloth with his drippy utensil. He knows how to use a fork and spoon now. He doesn’t trash our bathroom anymore. And he sometimes remembers to wipe his bottom. He blows his own nose...instead of obliviously letting it run down his face. It is good to remember those things. For, so often, all I can see is how far he has left to go and how hopeless it feels.

After eight months of struggling through the bureaucracy of the system, my son is finally in the special education program and beginning to receive much needed help. There have been huge gains. Why is it that the moment a gain is in hand, my mind dismisses it and only sees what HASN’T been accomplished yet? It frustrates me that my husband is always (it seems to me) putting the bar unrealistically high for our son...yet my own responses to his accomplishments aren’t gracious, either. It’s as though we both are just so exasperated with his day in day out behavior and so wearied by his hyperactivity and IMPULSIVITY that we can’t enjoy what he does do well. When he accomplishes something, our hearts feel like ‘well it is about time!’

He is so frustrating to teach. I am a homeschooling mom, yet I dread even trying to help my son (the only one in public school) with his worksheets. His attention span is about one and a half seconds long--literally. He twitches, jerks, and squirms incessantly and his eyes flit from one end of the room to the other constantly on ‘scan’--never on ‘focus’ or ‘pause’. But, what frustrates me the most deeply is that when I finally have seemed to SUCCEED with teaching him something (the letter ‘M’ for example), a day or two later it is as though he has never even been exposed to the concept before. This is not willfulness. It is complete inability either to store the information in memory or else to RETRIEVE it once it has been stored. It is so frustrating. Even his successes become a frustration and discouragement because I know from experience that what he knows today, he very likely will be an utter stranger to tomorrow. I get so tired of starting all over again at square one. What makes this even more frustrating is how OBSESSIVE he is with the things that DO interest him….like Spiderman, Batman, and Legolas (of Lord of the Ring). THESE words he can say. They are the majority of his spoken vocabulary. THESE images he can remember. THESE things he fixates on...chattering on and on unintelligibly about them CONSTANTLY. He can’t eat his food because he is fixated on the superhero of the moment. He can’t listen to family members because he is so intent on chattering away about the superhero. Every waking moment is constant obsessing about the superhero of the moment...incessantly begging for a costume in the superhero’s image...constantly vigilant for any product at the stores and in the community that bears the superhero’s mark. Why can’t he obsess about the letters of the alphabet???!!!!

What distresses me most of all, is my own heart. It grieves me that my love for my own son waxes and wanes...swinging on the pendulum of my own emotional equilibrium. I do not love him the same way I love my nine year old daughter and my three year old daughter. I remember when we approached our second adoption, truly fearing in my own heart that I might not ever love our second child with the same intensity that I loved our first. How could any child ever measure up to the one we already had? Our first child excelled at anything and everything she tried. She was so intelligent with almost a photographic memory and so talented--musically, physically, intellectually. I secretly feared that any other child would be a hidden disappointment to my heart. I was wrong. Along came our second child...nothing at all like her sister. The only area she excels above normal in is her love of relating to others. She never met a stranger and takes for granted that everyone will love her...those are her self-fulfilling prophecies! She stands out in a crowd, capturing with natural ease every heart she gazes towards. She isn’t unusually bright or particularly talented in any area or even possesing the striking beauty her older sister was graced with, but she stole my heart utterly. She came to us so emotionally neglected and so emotionally needy. As a nine month old infant, she banged her own head repetitively and would rock herself back and forth furiously, withdrawn into her own self, staring blankly ahead. But she was STARVING to be touched and held. And that little baby captured a part of my heart that I never even knew existed. I didn’t have to worry about finding room for her in the part of my heart that already belonged to our first child. Caught in the gaze of her sparkling black eyes, a part of my heart that I didn’t even know I had was forever lost to her. So, when we approached adoption number three, I didn’t worry that I might not love that child as I would be the same way all over again...but it wasn’t. For the first few months it felt like I was babysitting some neighbor’s child. He doesn’t feel like the neighbor’s child, anymore...but...
I honestly DO love my son. If I had no other children, I wouldn’t know that something was amiss in my own heart. But, I DO have other children...and my heart knows that it does not receive him the same way it does the others. I realize this in odd moments. Like the other day when we were walking in the parking lot towards the entrance of the WalMart...all three children were strung out holding hands as I held the hand of the youngest. I wanted the two older ones to break off and walk in front of us so that we would not be meandering into the line of traffic. You know how you internally size up a potential hazard? The fleeting thought that registered in my mind was that if one of them were injured in our current configuration it would most likely be my son. And in that nano-second, I saw my own heart and knew that if I had to lose one of them, my son was the one I would choose to lose. How can a mother ever choose?....even hypothetically in the most secret recesses of her heart? When the day comes that I could NOT choose, I will know that I truly have learned to love my son. Learning to love...what a strange concept. I never thought I would have to LEARN to love my own child. I thought it would be instinctual and inescapable...not capricious at best, and sometimes downright elusive.


Tuesday, April 12, 2005

Even the good days are exhausting

The thing that no one tells you about being a special needs parent is that even on those days when you feel like you're winning, the fight still sucks the life out of you. No one tells you that the depression is still lurking there, and the exhaustion, and that feeling that even now, you're fighting something bigger than yourself, something that never sleeps and will never give up.

I look at photos of myself from two years ago, and I swear I've aged ten years.

Friday, April 01, 2005

Child-Directed Living

One of the reasons that infancy is so precious is that it's so fleeting. There are only a few months when your little bundle of joy is a snuggly round ball of (mostly!) sweet-smelling baby, content to be carried around all day.

By 18 months, kids are so independent. They run around, they talk, they let you know what they want. And the play, the play - it's child-directed. Child-directed play. Walking around. Talking.
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I wonder if other parents ever think about how much easier it is when you can occasionally put your child down in the store or outside without sitting her on the filthy floor or ground. I wonder if other parents cherish each time their children run up to them with a toy, saying, "show me!" I don't know, because they all seem to talk about how exhausting it is to have to run after toddler all the time, listen to them asking "Dat?! Dat?!" (What's that?) over and over, go to the park again and again.

Ellie is 17 months old. She's a great little babbler and mimic, but she doesn't use language (that I can understand) spontaneously on her own much. She doesn't stand unassisted. She doesn't walk. Things could be so much worse. There are so many things that she does do, and does incredibly, unbelievably well. But -

On days when it's just the two of us at home alone all day, like this week when she's had a cold and we haven't done much, it's so exhausting. I'm exhausted by not running after a toddler. I'm exhausted by mommy-directed play, where I entertain, entertain, entertain, and hope that I happen upon what she wants. It's hard work and it's emotionally exhausting.

Infancy was unbelievably precious, yes. And now, ungrateful me, I am ready for the next phase, please.