I was recently asked to comment on the way I felt when I found out Emma had Down syndrome. The question was posed by a friend who has adopted a child with DS but does not have a child with DS by birth.
It's hard to know where to start, but my reaction was based on many things that had happened prior to Emma. I know it's pretty obvious but my reaction is only that...my reaction. I don't claim to speak for others.
I had very little exposure to folks with DS as a child. I certainly never had any children with DS in my classes. Nonetheless, I read a lot and would occasionally run across a heartwarming article about a person with DS or some other disability who had done something wonderful. I love stories like that and tucked them away in my memory. I suppose that is how I came to have a conversation with a friend of mine. She said she always thought God would give her a child with DS because He would know how much she would love such a child. I don't recall if I said this or just thought it, but I knew I felt the same way.
Fast forward a few years and I was in a doctoral program in clinical psychology. One of my classes was Abnormal Psychology. The professor spent a few minutes of class talking about chromosomal disorders, of which Down syndrome is the most common. She mentioned that most people with DS are usually, but not always, mentally retarded (by definition, scoring below a 70 on an IQ test) but typically they are only mildly mentally retarded rather than moderately or severely MR. That piece of information stuck with me; now I know why.
During grad school and beyond I had some infertility issues. After my one and only IVF procedure I found out I was pregnant. This was exciting and wonderful news for someone who was beginning to wonder if she would ever have children! Without discussing whether or not I wanted this done, my OB had a triple screen test performed on me. I had become so accustomed to having blood drawn at every visit during infertility visits that I never even asked why I needed more drawn! The triple screen is intended to check whether the baby has a possibility of spina bifida or Down Syndrome (or other less common chromosomal abnormalities).
Having already forgotten about the blood draw, imagine my surprise when the nurse called to tell me I had to get an amniocentesis scheduled ASAP because the test showed the baby might have DS. I was devastated. I was NOT devastated that the baby might have DS; I was devastated because I knew that amnio carried a significant risk of miscarriage. I had gone through years of testing, surgery, and worries trying to get pregnant and now this nurse wants to put my child in jeopardy?
When John came home that night I told him what had happened that day. He gave me this very surprised look and said that I most certainly did not HAVE TO HAVE an amnio and that if our baby was born with DS then we would just love him all the more. That was all that I needed to hear. I refused the amnio and we never even told anyone that DS was a possibility until the night before I was scheduled to be induced. Luke was born the next evening with only his parents' genes to account for any goofiness! I think that this experience, probably more than any other, was a big part of God's plan to prepare our hearts for Emma.
After Luke was born I had secondary infertility so it was at that time that John's heart was turned to adoption and we decided to adopt a girl from China. I mainly mention this here because I think it speaks to the reality that we were moving away from the idea of a 'perfect' suburban family. We were also moving away from the idea that somehow our genes were so special that they must be passed down!
Adopt from China we did, but not before we went to Russia first. I actually went to China when I was four months pregnant with Anna, our first 'free' baby. Four months after Anna was born, I found out I was pregnant again, days after I found out God was calling us to go to Calgary, Canada, as volunteer missionaries. I had four children ages 4, 4, 2, and 4 months.
About halfway through my pregnant we did move to Canada and I was honestly so busy that I spent very little time thinking about the baby we were expecting. When I did think about the baby, my main concern was that she might not feel special. I had two boys and two girls at this point and they each had their claim to fame: Luke was the firstborn but Alex was adopted from Russia and the oldest; Anna was the firstborn girl but Song was adopted from China and was the oldest girl. This child wouldn't be the first anything!
We knew the baby was breech and that I would have to have a c-section this time, but our Canadian doctor refused to schedule it. That is how I came to an understaffed Canadian hospital at 11:30 p.m. on an icy January night. Their one anesthesiologist on call was busy with an emergency appendectomy so eventually, as I was ready to push (!), he came in and administered a spinal. A few minutes later they pulled out Miss Emma Lane and whisked her off to an isolette. Because we knew I would be open we had asked for my tubes to be tied since five children seemed like an awful lot of children.
Instead of proceding with that operation, our OB came over and said, "We believe your daughter has Down Syndrome. Do you still want your tubes tied?" We actually didn't even consult each other but both issued a resounding, 'YES!' As we would later explain, we weren't looking for the perfect child, we were looking for the last child. Turns out, we got the perfect but not the last!
Within just a few minutes Emma was brought over to me, tightly wrapped in a blanket and sleeping. I will never forget seeing her profile and knowing instantly they were right; she had Down Syndrome. In fact, my first words to her were just that, "Well, you do have Down Syndrome, don't you?" John later said he was concerned I would cry or be upset and I think my matter-of-fact response helped him, too.
So, what did I think when I was told? At first, I honestly can't say that I thought about it much more than you would about other pieces of information like eye color. I tend to be like that anyway; I let information percolate into my brain slowly. I was glad she was here. I was glad that she didn't have any obvious problems.
She did sort of develop a problem, however. Either that, or no one noticed for quite a while because the hospital never assigned a pediatrician to look after her until she was nearly 24 hours old. Turns out, she wasn't maintaining her body temperature and was moved to the special care unit for a week until she learned to eat from a bottle.
During the first day in the room when no one was noticing her much, the genetic specialist came in to talk with me. He gave me some very old brochures about DS and looked completely awkward and unable to say anything helpful. I could tell that I probably had more information about living with DS than he did.
After Emma was in the special care unit we had more weird visitors from the hospital, administrators and such. I remember the social worker came and asked lots of personal questions about us, our background, etc. She finally declared we were the perfect parents for a child with DS. We were glad to know she agreed with God on that one.
The nurses in the unit were for the most part quite helpful. One spent quite a bit of time searching the internet and printing out more up to date information. Another one knew that there was a large support group in Calgary and that they provided folders of information so she got one for us. Another nurse actually put us in contact with a parent who had delivered a child with DS there. They eventually came to see us at home once Emma was released and we were able to see their beautiful daughter.
In those days when Emma was still in the hospital and I was at home, I did manage to come up with a few worries. The first was that she would never leave home. Then, as I was falling in love with her and also reading more about DS I developed a new worry: she might leave home! It only took me a couple of days to realize what a wonderful gift it could be to have a nest that never quite got empty. I mentioned my new concern to John who put it all in perspective: if she leaves home think how proud you'll be that she is able to do so; if she stays home think how happy you'll be to have her around.
The other concern I had was that Emma would be upset seeing her siblings have children and she would forever be the aunt. I carried that worry around for years but it seems to have lost its power lately. I guess that as I've come to know Emma I can see that although she occasionally gets upset about things she is a content person. Her default temperament is happy. I think she'll be fine.
Other than those worries I just wasn't upset about having a child born with Down syndrome. She was so sweet and she started sleeping through the night when she was two weeks old. That's enough to make any child my favorite forever! I also thought she was going to be my last child, having had my tubes tied and all. I felt extra blessed to have a baby who would be like a baby a lot longer than a typical infant. It was nice! She was extra snuggly for years.
Emma's story is one of my favorites. I didn't know it at the time, but God was announcing through her birth the new ministry He had for me. Isn't that just like Him? Here I was, worried that Emma would be the child who wasn't special and I was busy praying that He would help me to help her feel special. How He must have smiled at my prayers! He knew the plans He had for her, for me, and for children we didn't even know about yet. As John said in an announcement email he sent to our friends in Texas shortly after her birth: Those of you who know Jill best know she would fight to the death for the underdog. God, who clearly knows me best, had in His sweet wisdom focused my fierce love for the underdog on one particular group.
Shortly after Emma was born, I received the sweetest note from a friend back home. One thing she wrote stayed with me, 'God just reached down and gave you a big old kiss on the forehead when He gave you Emma.' Yes, He did. To put it differently:
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:7
God had not made a mistake in giving Luke and Anna to us as perfectly healthy children and He was not mistaken in giving Emma to us. She was, and continues to be, a good and perfect gift from God.
It's hard to know where to start, but my reaction was based on many things that had happened prior to Emma. I know it's pretty obvious but my reaction is only that...my reaction. I don't claim to speak for others.
I had very little exposure to folks with DS as a child. I certainly never had any children with DS in my classes. Nonetheless, I read a lot and would occasionally run across a heartwarming article about a person with DS or some other disability who had done something wonderful. I love stories like that and tucked them away in my memory. I suppose that is how I came to have a conversation with a friend of mine. She said she always thought God would give her a child with DS because He would know how much she would love such a child. I don't recall if I said this or just thought it, but I knew I felt the same way.
Fast forward a few years and I was in a doctoral program in clinical psychology. One of my classes was Abnormal Psychology. The professor spent a few minutes of class talking about chromosomal disorders, of which Down syndrome is the most common. She mentioned that most people with DS are usually, but not always, mentally retarded (by definition, scoring below a 70 on an IQ test) but typically they are only mildly mentally retarded rather than moderately or severely MR. That piece of information stuck with me; now I know why.
During grad school and beyond I had some infertility issues. After my one and only IVF procedure I found out I was pregnant. This was exciting and wonderful news for someone who was beginning to wonder if she would ever have children! Without discussing whether or not I wanted this done, my OB had a triple screen test performed on me. I had become so accustomed to having blood drawn at every visit during infertility visits that I never even asked why I needed more drawn! The triple screen is intended to check whether the baby has a possibility of spina bifida or Down Syndrome (or other less common chromosomal abnormalities).
Having already forgotten about the blood draw, imagine my surprise when the nurse called to tell me I had to get an amniocentesis scheduled ASAP because the test showed the baby might have DS. I was devastated. I was NOT devastated that the baby might have DS; I was devastated because I knew that amnio carried a significant risk of miscarriage. I had gone through years of testing, surgery, and worries trying to get pregnant and now this nurse wants to put my child in jeopardy?
When John came home that night I told him what had happened that day. He gave me this very surprised look and said that I most certainly did not HAVE TO HAVE an amnio and that if our baby was born with DS then we would just love him all the more. That was all that I needed to hear. I refused the amnio and we never even told anyone that DS was a possibility until the night before I was scheduled to be induced. Luke was born the next evening with only his parents' genes to account for any goofiness! I think that this experience, probably more than any other, was a big part of God's plan to prepare our hearts for Emma.
After Luke was born I had secondary infertility so it was at that time that John's heart was turned to adoption and we decided to adopt a girl from China. I mainly mention this here because I think it speaks to the reality that we were moving away from the idea of a 'perfect' suburban family. We were also moving away from the idea that somehow our genes were so special that they must be passed down!
Adopt from China we did, but not before we went to Russia first. I actually went to China when I was four months pregnant with Anna, our first 'free' baby. Four months after Anna was born, I found out I was pregnant again, days after I found out God was calling us to go to Calgary, Canada, as volunteer missionaries. I had four children ages 4, 4, 2, and 4 months.
About halfway through my pregnant we did move to Canada and I was honestly so busy that I spent very little time thinking about the baby we were expecting. When I did think about the baby, my main concern was that she might not feel special. I had two boys and two girls at this point and they each had their claim to fame: Luke was the firstborn but Alex was adopted from Russia and the oldest; Anna was the firstborn girl but Song was adopted from China and was the oldest girl. This child wouldn't be the first anything!
We knew the baby was breech and that I would have to have a c-section this time, but our Canadian doctor refused to schedule it. That is how I came to an understaffed Canadian hospital at 11:30 p.m. on an icy January night. Their one anesthesiologist on call was busy with an emergency appendectomy so eventually, as I was ready to push (!), he came in and administered a spinal. A few minutes later they pulled out Miss Emma Lane and whisked her off to an isolette. Because we knew I would be open we had asked for my tubes to be tied since five children seemed like an awful lot of children.
Instead of proceding with that operation, our OB came over and said, "We believe your daughter has Down Syndrome. Do you still want your tubes tied?" We actually didn't even consult each other but both issued a resounding, 'YES!' As we would later explain, we weren't looking for the perfect child, we were looking for the last child. Turns out, we got the perfect but not the last!
Within just a few minutes Emma was brought over to me, tightly wrapped in a blanket and sleeping. I will never forget seeing her profile and knowing instantly they were right; she had Down Syndrome. In fact, my first words to her were just that, "Well, you do have Down Syndrome, don't you?" John later said he was concerned I would cry or be upset and I think my matter-of-fact response helped him, too.
So, what did I think when I was told? At first, I honestly can't say that I thought about it much more than you would about other pieces of information like eye color. I tend to be like that anyway; I let information percolate into my brain slowly. I was glad she was here. I was glad that she didn't have any obvious problems.
She did sort of develop a problem, however. Either that, or no one noticed for quite a while because the hospital never assigned a pediatrician to look after her until she was nearly 24 hours old. Turns out, she wasn't maintaining her body temperature and was moved to the special care unit for a week until she learned to eat from a bottle.
During the first day in the room when no one was noticing her much, the genetic specialist came in to talk with me. He gave me some very old brochures about DS and looked completely awkward and unable to say anything helpful. I could tell that I probably had more information about living with DS than he did.
After Emma was in the special care unit we had more weird visitors from the hospital, administrators and such. I remember the social worker came and asked lots of personal questions about us, our background, etc. She finally declared we were the perfect parents for a child with DS. We were glad to know she agreed with God on that one.
The nurses in the unit were for the most part quite helpful. One spent quite a bit of time searching the internet and printing out more up to date information. Another one knew that there was a large support group in Calgary and that they provided folders of information so she got one for us. Another nurse actually put us in contact with a parent who had delivered a child with DS there. They eventually came to see us at home once Emma was released and we were able to see their beautiful daughter.
In those days when Emma was still in the hospital and I was at home, I did manage to come up with a few worries. The first was that she would never leave home. Then, as I was falling in love with her and also reading more about DS I developed a new worry: she might leave home! It only took me a couple of days to realize what a wonderful gift it could be to have a nest that never quite got empty. I mentioned my new concern to John who put it all in perspective: if she leaves home think how proud you'll be that she is able to do so; if she stays home think how happy you'll be to have her around.
The other concern I had was that Emma would be upset seeing her siblings have children and she would forever be the aunt. I carried that worry around for years but it seems to have lost its power lately. I guess that as I've come to know Emma I can see that although she occasionally gets upset about things she is a content person. Her default temperament is happy. I think she'll be fine.
Other than those worries I just wasn't upset about having a child born with Down syndrome. She was so sweet and she started sleeping through the night when she was two weeks old. That's enough to make any child my favorite forever! I also thought she was going to be my last child, having had my tubes tied and all. I felt extra blessed to have a baby who would be like a baby a lot longer than a typical infant. It was nice! She was extra snuggly for years.
Emma's story is one of my favorites. I didn't know it at the time, but God was announcing through her birth the new ministry He had for me. Isn't that just like Him? Here I was, worried that Emma would be the child who wasn't special and I was busy praying that He would help me to help her feel special. How He must have smiled at my prayers! He knew the plans He had for her, for me, and for children we didn't even know about yet. As John said in an announcement email he sent to our friends in Texas shortly after her birth: Those of you who know Jill best know she would fight to the death for the underdog. God, who clearly knows me best, had in His sweet wisdom focused my fierce love for the underdog on one particular group.
Shortly after Emma was born, I received the sweetest note from a friend back home. One thing she wrote stayed with me, 'God just reached down and gave you a big old kiss on the forehead when He gave you Emma.' Yes, He did. To put it differently:
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:7
God had not made a mistake in giving Luke and Anna to us as perfectly healthy children and He was not mistaken in giving Emma to us. She was, and continues to be, a good and perfect gift from God.
8 comments:
Aw, Jill. Thanks for answering my question. That was a beautiful answer that brought a tear to my eye. :)
Absolutely beautiful. Thank you for sharing! Looking again at your kiddos faces I agree, each one a good and perfect GIFT!
Sweetness personified. And a special gift for NiNi and PopPop. We love her and all the rest of you.
one of my best friends from college has a down
syndrome daughter. she is the light of their
whole family and the entire university of oklahoma
campus!
thank you for sharing such a moving story.
blessings,
lea
Such a beautiful story of God's extravagant love and the wonderful love of a precious family.
Blessings,
Sarah
Oh, Jill--I have goosebumps! Thanks for sharing your story. I love Johns perspective when you worried about Emma leaving home some day. What a wise Hubby he is!
Ashley, I'm sending Emma and Vera and Ella to live in your group farm some day, K?
Jill,
I just love this post! You and John sound like the most wonderful people! Anyway, just sitting here all smiles reading this!
Lu
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