It's been six months and a week since I last posted. I, clearly, am not a reliable blogger!
For someone that never seems to run out of things to say, I have shirked my responsibility to update my family on my family (since this is how families communicate these day).
I think when I first started this blog, I had, hidden in the depth of my heart, a fear that Taeya would not survive her open heart surgery. The truth is, the guilt I carried for being angry with a diagnosis of Down syndrome overrode any rationale I could muster.
Once inducted into this community, you find yourself with a whole new vocabulary that, in order to keep up, you need to learn to speak. I remember the first time I heard of a campaign to end the "R" word. I didn't know what the "R" word was! The only thing I knew was, if I was going to limit my risk of loss of relationships in the midst of feeling like I was drowning in a diagnosis, I'd better not say any words that began with the letter "R" until I could figure this out.
After a week of two of pure shame at not being able to figure out the meaning, I had to ask the Physical Therapist! I think I sank even deeper into hole of dark depression when I learned.
Why? Because when I first heard the diagnosis of Down syndrome and was given 48 hours to "make up my mind what I wanted to do", the first thought that crossed my mind was, "Do you really think you can raise a child that has some level of retardation?" The "R" word, to me, is shaped like a shameful nail in a coffin.
I have learned in the past year that labels are very painful, and that is one word you just simply don't use. For me, personally, it doesn't conjure up as much of a defensiveness for my child as it maybe should. For me, it conjures of a whole heap of shame.
Never once did I consider not continuing my pregnancy. I did, however, look down at my precious Taeya when they laid her on my stomach at her birth and turned to my daughter and said, "Oh, she looks so Downs". The familiar feeling of shame is rising to the top as I write this....
Let's face it: I'm a wretch. I was so angry during my pregnancy. I did not embrace what lay before me when I walked out of the Maternal Fetal Medicine Unit. I shook my fists at the God that chose this for me. I wanted to scream every time I met someone that told me how perfect and wonderful their Ds child is. If I heard one more person tell me that they were so proud of their Ds kiddo for saying something as simple as Strawberry at age 5, I was going to jump off a cliff.
Then there were those that felt I deserved a child that would always struggle. To some, it was a judgment God put on me for everything wrong I had ever done.
And the accuser of my soul was just as near as ever in the delivery room. I felt so guilty for thinking Taeya looked like she had Down syndrome and the fact that it was my first thought.
Today, I think, so what? She does look like she has Down syndrome. She has Down syndrome. :)
When Taeya had her surgery and I first launched this blog, I was sure that God was going to strike me down and take Taeya away from me for every random, un-captive thought I had. But I've had a few lessons in the past several months. I've learned to be a little forgiving of myself for not knowing how to face this unknown. I'm not a hero that adopted a child with special needs. I'm not someone who has faced head on all our challenges and held my head up high with everything God has sent my way. I am a mom that, though I am sometimes slow to come around, is madly, crazy, head over heals in love with my daughter!
Tonight I talked to a friend who's going through some similar sufferings. She shared with me that she feels shame for how she faced the diagnosis of her Ds child, and my heart ached for her. I thought, maybe, there will be some mommy out there that will get the news of her child, before or after the birth, that her child has Down syndrome. And maybe she feels like a wretch. And maybe she's shaking her fists. And maybe she's asking "Why me?" And maybe she's a lifeline away, a little blog post away, from looking for the nearest cliff to jump off. And maybe, somehow, it'll help to know that none of us are alone in any of our shortcomings. Because the glorious truth is that we are all wretched, blind, in need of a heavy dose of grace mommies who, in time, get that Down syndrome is not a sentence; it's a gift. A gift that I simply have no words to even thank my great God for.
Down syndrome does not define our life; we help to define Down syndrome.
For my friend: Six months of fear and shame has kept me silent. Shame that I did not deal with any of this with more..... taste, wisdom, peace, grace. You are not alone in your shame, but that is not where God wants any of us to remain. I will hold you up. I will be here for you. We can get though all of this together. You are not alone. You are a wonderful mommy and God has entrusted you with more because you have been found faithful in His sight.
Thursday, August 11, 2011
Friday, February 18, 2011
Welcome to Holland
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......Emily Perl Kingsley.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
The Wonderful World of Downs
When I first got the news that Taeya has Down syndrome, I was 5 months pregnant. I remember the day like it was yesaterday. At the same time, much has faded. The sonographer was scanning my tummy and being predictably stoic. I remember asking him if he was able see her heart - the reason I was sent to Maternal Fetal Medicine to begin with. There has been a "shadow" on her heart and I needed more evaluation.
In my heart I knew everything would be alright. I also, somewhere deep inside me, knew something was not so right.
The sonographer told me that reading a scan is as good as seeing one side of a house being painted. "What?", I thought. "Is he crazy? I'm a mom with a 5 month old fetus kicking around in me. Surely you see something". So in my creativity I asked what the side of the house being painted looked like. I think I threw him off. At that, he responded by saying there were "things that concerned him".
He left the room in a bit of a rush and returned just as quickly as he had left, with a kind looking, nicely dressed woman, and another woman in a white lab coat. They didn't waste any time. They introcuded themselves as the Materal Fetal Medicine doc and the genetic counselor.
"What? Why do I need a genetic counselor. There's nothing wrong. Nothing is wrong with my other kids. Nothing can be wrong with this one". I was half pleading for some mercy in the midst of my world crashing in on me.
"Well, your baby has a shortened nasal bone", the doc said.
"So"? I mean, really, my nose isn't huge for heaven's sake.
"And she has what's called an AVSD. It's a valve defect". I later learned that was a huge understatement. It wasn't a defect. It can't be a defect where there are no valves at all.
"So what exactly does this mean? Is there some link between the nasal bone and the heart defect?", I asked.
"Yes, these are both strong markers for Trisomy 21. Down syndrome", she responded.
"Down syndrome"? How can that be? My other kids don't have Downs". In my mind, even though I knew it wasn't true, the fact that my other children didn't have Downs meant that this little one didn't either.
Then the genetic counselor chimed in. "You are already 5 months along. You have about 48 hours to make a decision".
I was transported, at that moment, to another place altogether. I think there is an emotional room that hovers somewhere in time that people slip away to in the face of news that's too much to process.
"Okay, wait a minute. So you mean that a diagnosis of Down syndrome is so bad that terminating the child's life is a better option", I asked.
"I'm not saying it's better. It's just what many people choose", she replied.
So there I had it.
I ended up having an amnio that day. I didn't want it; I just didn't have the strength to even speak for myself. I remember asked the doctor before I left their office that day if I was selfish for wanting to keep my daugther. She said no, that it was the least selfish decision I could make. I remember being surprised by her comment. Surprised because of the quick offer made by the genetic counselor to terminate my daughter because of her additional little chromosome.
I spent the next four months angry; angry with God, with all those moms that didn't face this, with Maternal Fetal Medicine. But mostly, with myself. What was wrong with me that I could not accept what God chose for me? If any friend had come to me with this circumstance, I would have encouraged them to trust God fully. But for me, I couldn't do it.
I started researching like crazy. I would reach out to the Downs group here and then not return phone calls. I couldn't. It was too much. It meant I had to accept this reality. The Dean at my school has a daughter with Downs. She was the only one I could talk to for months. She would let me look at pictures of her precious little girl, Claire. Some days, while I was in school, I would walk to her office and she'd see me lurking outside her door. She would excuse herself from meetings, calls, trainings, you name it. She'd clear her office, bring me in, shut the door and hand me a box of Kleenex. I don't know what I would have done without her.
I'd call my best friend and rant that I never wanted to be proud of my 4 year old for being able to say "strawberries".
I was a mess.
I came across a poem that all Down syndrome families know. It's called Welcome to Holland. Somehow, it freed me. I began to accept what would become the most wonderful journey of my life. I will post it below.
My daugher has, without a doubt, been one of the greatest blessings in my life. I would not trade her for anything in the world. I would not ask to have her genetics put in any different order. I have found that I am truly the one who is blessed to be chosen to have a daughter so sweet, so precious as this little girl.
Taeya has taught me so many things. She's taught me to accept myself for who I am. That's still a daily struggle, but she's so patient with me. She's taught me that it's okay to go at your own pace. She has also taught me that, as much as she has some developmental delays, I do too.
I am compeletely in love with my daughter. Her Down syndrome doesn't define her. Rather, she helps to define this wonderful world of Down syndrome.
In my heart I knew everything would be alright. I also, somewhere deep inside me, knew something was not so right.
The sonographer told me that reading a scan is as good as seeing one side of a house being painted. "What?", I thought. "Is he crazy? I'm a mom with a 5 month old fetus kicking around in me. Surely you see something". So in my creativity I asked what the side of the house being painted looked like. I think I threw him off. At that, he responded by saying there were "things that concerned him".
He left the room in a bit of a rush and returned just as quickly as he had left, with a kind looking, nicely dressed woman, and another woman in a white lab coat. They didn't waste any time. They introcuded themselves as the Materal Fetal Medicine doc and the genetic counselor.
"What? Why do I need a genetic counselor. There's nothing wrong. Nothing is wrong with my other kids. Nothing can be wrong with this one". I was half pleading for some mercy in the midst of my world crashing in on me.
"Well, your baby has a shortened nasal bone", the doc said.
"So"? I mean, really, my nose isn't huge for heaven's sake.
"And she has what's called an AVSD. It's a valve defect". I later learned that was a huge understatement. It wasn't a defect. It can't be a defect where there are no valves at all.
"So what exactly does this mean? Is there some link between the nasal bone and the heart defect?", I asked.
"Yes, these are both strong markers for Trisomy 21. Down syndrome", she responded.
"Down syndrome"? How can that be? My other kids don't have Downs". In my mind, even though I knew it wasn't true, the fact that my other children didn't have Downs meant that this little one didn't either.
Then the genetic counselor chimed in. "You are already 5 months along. You have about 48 hours to make a decision".
I was transported, at that moment, to another place altogether. I think there is an emotional room that hovers somewhere in time that people slip away to in the face of news that's too much to process.
"Okay, wait a minute. So you mean that a diagnosis of Down syndrome is so bad that terminating the child's life is a better option", I asked.
"I'm not saying it's better. It's just what many people choose", she replied.
So there I had it.
I ended up having an amnio that day. I didn't want it; I just didn't have the strength to even speak for myself. I remember asked the doctor before I left their office that day if I was selfish for wanting to keep my daugther. She said no, that it was the least selfish decision I could make. I remember being surprised by her comment. Surprised because of the quick offer made by the genetic counselor to terminate my daughter because of her additional little chromosome.
I spent the next four months angry; angry with God, with all those moms that didn't face this, with Maternal Fetal Medicine. But mostly, with myself. What was wrong with me that I could not accept what God chose for me? If any friend had come to me with this circumstance, I would have encouraged them to trust God fully. But for me, I couldn't do it.
I started researching like crazy. I would reach out to the Downs group here and then not return phone calls. I couldn't. It was too much. It meant I had to accept this reality. The Dean at my school has a daughter with Downs. She was the only one I could talk to for months. She would let me look at pictures of her precious little girl, Claire. Some days, while I was in school, I would walk to her office and she'd see me lurking outside her door. She would excuse herself from meetings, calls, trainings, you name it. She'd clear her office, bring me in, shut the door and hand me a box of Kleenex. I don't know what I would have done without her.
I'd call my best friend and rant that I never wanted to be proud of my 4 year old for being able to say "strawberries".
I was a mess.
I came across a poem that all Down syndrome families know. It's called Welcome to Holland. Somehow, it freed me. I began to accept what would become the most wonderful journey of my life. I will post it below.
My daugher has, without a doubt, been one of the greatest blessings in my life. I would not trade her for anything in the world. I would not ask to have her genetics put in any different order. I have found that I am truly the one who is blessed to be chosen to have a daughter so sweet, so precious as this little girl.
Taeya has taught me so many things. She's taught me to accept myself for who I am. That's still a daily struggle, but she's so patient with me. She's taught me that it's okay to go at your own pace. She has also taught me that, as much as she has some developmental delays, I do too.
I am compeletely in love with my daughter. Her Down syndrome doesn't define her. Rather, she helps to define this wonderful world of Down syndrome.
Monday, December 20, 2010
Just a cold...
No sleep at all and it's just a cold. Praise God.
More for Taeya than anything, I'm going to post pictures and memories of our beginnings.
More for Taeya than anything, I'm going to post pictures and memories of our beginnings.
On our way to the hospital...
I was sure I would put up photos and update on T at 8 weeks post op. We've had a few feeding challenges. Either the chylothorax is not healed or she has a bad cough. It sounds like her lungs are filling up. Please pray for heeling.
Linda
Linda
Wednesday, November 3, 2010
12 Days Post Op
Taeya is doing really well. Her scar is on it's way to being healed and she can finally take a bath tonight! She is such a little stinker and will not leave her cannula alone! I have to get a pic of the tape wars we are going through!
We went to the Cardiologist today and her pressures were great after having left her off the oxygen for a half hour to see the results. She still needs to remain on the oxygen for now. We will check again in two weeks to see if she has progressed any.
Taeya's heart repair is not completely successful. There is some back flow of oxygenated blood into non oxygenated blood. The problem will likely reverse itself, but will always have to be monitored as she grows up. They will do another ECHO in two weeks. For now, she is doing well and every day with her is an absolute gift.
Thank you all for your continued prayers for her healing. She is a blessing to us and we are so, so thankful that she's doing well.
Every blessing,
Linda
We went to the Cardiologist today and her pressures were great after having left her off the oxygen for a half hour to see the results. She still needs to remain on the oxygen for now. We will check again in two weeks to see if she has progressed any.
Taeya's heart repair is not completely successful. There is some back flow of oxygenated blood into non oxygenated blood. The problem will likely reverse itself, but will always have to be monitored as she grows up. They will do another ECHO in two weeks. For now, she is doing well and every day with her is an absolute gift.
Thank you all for your continued prayers for her healing. She is a blessing to us and we are so, so thankful that she's doing well.
Every blessing,
Linda
Friday, October 29, 2010
Healing
It's been 8 days now since Taeya had her open heart surgery. Crazy that all that time has past. The fear of anticipation of what the outcome would be, the intensity of handing her over to the OR nurse, the shock of seeing her after surgery, the feeling of inadequacy of bringing her home.... It's all like a whirlwind. I've spent the better part of the day crying while my brain tries to catch up to all that's taken place.
Taeya's days and nights are confused, so we aren't sleeping much. She takes long naps during the day and I try to balance sleep with getting things done and being a mom to my others. She cries do loud now, too!! I asked her Cardiologist what they did with my sweet, calm, peaceful little baby! This is reminiscent of colic!
Eight days later, her scar is healing. One day, there will just be some faint marks that evidence the reality of this season. People tell me I'll forget; that one day I'll look back on this and it won't be so intense. I don't know that I agree. I do know that we will settle in to our "new normal" and life will again take over. But the scar of surgery she bears over her heart is a mirror image of the scar of emotion I bear on my own heart.
Linda
Taeya's days and nights are confused, so we aren't sleeping much. She takes long naps during the day and I try to balance sleep with getting things done and being a mom to my others. She cries do loud now, too!! I asked her Cardiologist what they did with my sweet, calm, peaceful little baby! This is reminiscent of colic!
Eight days later, her scar is healing. One day, there will just be some faint marks that evidence the reality of this season. People tell me I'll forget; that one day I'll look back on this and it won't be so intense. I don't know that I agree. I do know that we will settle in to our "new normal" and life will again take over. But the scar of surgery she bears over her heart is a mirror image of the scar of emotion I bear on my own heart.
Linda
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