Thursday, September 3, 2009

Diagnosis: Down syndrome

First Posted on October 15, 2007
Almost 2 weeks after our youngest daugter was born and was diagnosed with Trisomy 21 (Down syndrome)

Last May, when I was 19 weeks pregnant, I had a 4D ultrasound; the kind of ultrasound where you can actually “see” your baby. It was very fun and moving to see Nichole.
As I was looking at her, I felt like I needed to ask if her heart was okay. Some of our friends have been through a tough journey as their baby girl has had many heart problems and surgeries. I was not concerned about the same thing for Nichole, but somehow I felt like I needed to ask.
The technician didn't say much, except that there were four chambers visible in Nichole's heart, and that was good. A few minutes later, my midwife said that they had found some fluid around Nichole's heart, and I needed to have a level 2 ultrasound.
I vividly remember walking outside the clinic and crying, I called Andy and my parents, Andy called his parents, and many people started to pray, some people that we don't even know. The next day we were flying to Florida for the Alliance General Council and the ultrasound would have to wait one more week.
That first night in Florida I woke up in the middle of the night. I can't remember if I had a dream, but I do remember having an overwhelming sense that Nichole was going to have Down syndrome. My heart felt heavy and I remember thinking, “Not Down syndrome Lord, it is okay for our friends, but not for us.” Some of our closest friends have a two year old with Down syndrome, and I love Jennifer almost like a daughter. I got to watch her last year while her mommy worked part time at church, and I have never seen her as a child with a disability.
However, it was quite different as I thought of my daughter having Down syndrome.
The next day I asked Andy, “What if she has Downs?” and he said, “Then we will walk down that road, and we will not walk it alone.”
At Council, we prayed for healing for Nichole's little heart and the fluid to be gone. I really believed that God was going to heal her heart, and as we prayed, God very tenderly reminded me that He does not make mistakes, and I felt His peace in my heart.
The last day at council, the Alliance Missionaries had a parade, the new workers were introduced, and the ones that were retiring were recognized. We were very moved and emotional. I felt like we were being called to go into missions, and specifically, to go to the places where we would find the “unlovable ones,” those that by our world's standard are less, and have little to give. So we came home ready to start the process of pursuing missions, and asking God for confirmation.
When we went to have the level 2 ultrasound, Nichole's heart fluid was gone. Praise the Lord! We felt in our hearts that everything was okay. The doctor said not to worry, our baby girl was perfectly healthy. I walked away happy, and even then I asked Andy as we left the ultrasound room, “So does that mean she really does not have Downs?”
Up until this point, no doctor had even said the words Down syndrome to us.
Two weeks after that we went to my regular checkup. My midwife came in and asked Andy and I how we were feeling about the ultrasound.
“Great!” we said.
“Didn't they tell you?” she asked.
“Tell us what? The fluid is gone.” Her face changed, and for the first time we heard someone say, “your baby might have Down syndrome.” And as I sat there God whispered those words to me again, “I don't make mistakes.”
“And it will be okay if she does,” we said.
A few weeks later I spent some time in prayer and journaling. I was thinking about the unlovables, “Lord, is that really where you want to take us?” In my journal on June 3rd I wrote:
“It seems to be a time of questioning.....questioning the purpose of these seemingly “complications” during my pregnancy with Nichole. Questioning God's plan and direction for our family. I am wondering if God is asking me, “Do you trust me?” and my first response is, “Of course I trust you Lord.” Maybe He smiles and says, “I will teach you how to trust me.” I know it is not easy to trust God, at least not with.....the trust that requires giving ourselves, yes, our lives, our possessions, our children, our spouse! “Do you trust me” He asks, “Oh Lord I do, but honestly I am so scared, and the truth is, I want to have a perfect life. But more than that, I want to do what you want me to do, and it starts by trusting you, because you are good, and you love me, and true happiness and fulfillment in life come from you alone.”
On October 2nd Nichole was born. Two weeks early, I can't complain! The labor and delivery went almost as smooth and quickly as possible. And yes, Nichole was born with Down syndrome. Jeremiah 29:11 says, “For I know the plans I have for you declares the Lord.”
All along we were thinking missions, and God had little Nichole in mind. “Will you go to those that the world sees as less? the “unlovable” ones? Will you love them?” “Yes Lord,” I said. “Do you trust me,” He asked, “Oh Lord I do, but honestly I am so scared.”
My “life verse” has always been Psalm 139. I prayed it many times while I was pregnant with Nichole. Today there is even more meaning to these verses than ever before.

For you created my inmost being;
you knit me together in my mother's womb.
I praise you
because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.
How wonderful are your thoughts for me Oh Lord
How vast is the sum of them.
Were I to count them
They would outnumber the grains of the sand.

It has been an emotional journey. I have cried more tears than ever before and prayed for this all to be a mistake. It is not a mistake, this is the exact place and the exact road that God has chosen for us.
But we know God is good, and our family and friends have poured out their love on us. We have already experienced God's love and blessings in a way that maybe few people get to.
Complete trust, that is all we need, unconditional love, that is what we will learn to give. God knew that we needed Nichole, and like Andy said, maybe she needed us too. She is precious in God's eyes and He has entrusted us to take care of her. As we walk this path, we know that there will be hard times but that He will share his joy with us through Nichole.
"Do you trust me" He asks
Oh Lord I do trust you...but I am so scared.

If you could take Down syndrome away from your child...

I was recently talking with a friend who will be welcoming a baby boy with Down syndrome to their family. She asked great questions.
After our conversation, I realized that a lot of my answers really come from my experience, my perceptions, and the way I do life. As I seek to share accurate information, I asked this question in the forums I participate in. After all, it would be wrong of me to imply I represent ALl parents of children with Down syndrome
What is beautiful is that we all come from different walks of life, have different experiences, different religions, different families. What bring us together is that we ALL LOVE someone who has Down syndrome. And we love them with every ounce in our bodies.

The question I asked?

If there was a way to take away the extra chromosome away from your child and make them "typical" would you do it?

And why?

My answer is no, I would not, because not only would it not be Nichole anymore, but I would go back to being my old self, the person I was before Nichole. A person that knew little about love, joy, kindness, gentleness. A person too caught up in myself.
But most importantly, because I do believe that Nichole is perfect, absolutely perfect. Nothing about her needs fixing. She is exactly how God intended her to be, and He does not make mistakes.

My friend Leah said: "It totally depends upon my day. While DS isn't who Angela is, Angela wouldn't be who she is without that extra chromosome. (does that make sense?)

There are definitely days that I wish things were different, but those ALWAYS have to do with Angela's behavior. (and Angela's behavior is SO NOT typical of children who have DS. But then again, she wouldn't be Angela if she followed the books. WinkAngela would break every stereotype you've ever heard about people with DS.

I can't imagine Angela without DS. There are days, like yesterday when I had to pick her up from school, when I saw the other 6th grade girls chatting in the halls and wished Angela could have that. Then I turned the corner, and there she was with a different group of girls, laughing, chatting and carrying on. My girl, who who sometimes has such a difficult time in life, finding her way just like all the other girls.

So yeah, there are days I'd like to take it away, but I'd change my mind and want it back!

My friend Courtney said, "Lucy was diagnosed after birth, so we had already met her and started to get to know her before we found out. I mourned the loss of my expectations, but I never wanted to change Lucy. There are times when I curse that extra chromosome, but I would never wish her different. It would change who she is, and I couldn't tolerate that.

I have also said, however, that if God came to me before she was born and said, "Hey, I am thinking about giving you a baby with Ds. Are you ok with that?", I don't know what I'd say. (And please don't confuse that with terminating if we had found out about Lucy's Ds before birth....because that would never have been a thought to occur to us). What I mean is, if I had been given a choice prior to knowing her, I don't know how I would have responded. Maybe I would have surprised myself and accepted this challenging blessing. Or, maybe, the person I was at that time would have shrunk from a seemingly insurmountable task.

I think about these questions often...though less than I used to...and what I have come to realize is that I am so lucky. I have an amazing little girl. She's smart, funny, loving, happy, and driven. She is so easy to be around. She brightens up a room. She has an extra chromosome. She gives the best hugs and kisses. She loves her baby brother. She points to every thing and says "that", trying to satisfy her endless curiosity. She will celebrate her one year anniversary from heart surgery this week. She loves to sing songs and she's starting to learn to dance. She is a very typical toddler, especially in attitude. She's my daughter, and she's so perfectly imperfect it makes my heart smile."

"No way! Not on your life mister!
Teddy having Down syndrome opened my eyes to what's important in life and he has definitely made me a better person. And he's the most perfect little thing I've ever seen."

"Nope, wouldn't change a single thing about Brookster. She has been the best teacher I've ever had Smile"

"Nope, I would not take away the DS BUT... if I could take away the Autism I'd do it in a HEARTBEAT!!!!! Wink"

"My vote is no. If I could help him with his moods and behavior but I wouldn't ever want to change his personality or his outlook on this world which is so much purer than any of us can imagine."

"I would. I don't think DS causes Anna's wonderful personality but I do think it presents a lot of challenges which I prefer she did not have. I worry a lot about the increased risk of leukemia and early Alzheimers and I also worry about the lack of employment opportunities when she is an adult, the prejudice of society, and what her life will be like when DH and I are no longer around . Just as I wish my son did not have ADHD and those special challenges I wish that Anna could have a little less challenge in her life."

My friend Angie said, "
No, I wouldn't want to take it away! But I always wonder if SHE'D want it taken away or not. Time will tell that I guess. But for me, never."

"Nope, nada, nyet and no can do. Murphy has taught me so much and has made me more shall I say accepting and encouraging of diversity. She is also teaching me patience, unconditional love and has really made me play devil's advocate...A LOT. I love all my girls with all my heart, but, Murph is just the most lovable snuggable buggums. Her expressions are hysterical....and she gives the best sugar love kisses. I absolutely can not see her any differently than she is. About her future.... I'm not one to go borrow trouble, I will cross those bridge when I come to them. I live in the moment with Murph, not tomorrow, not next week or next year or 10 years from now. Who knows what difficulties will happen with any of our children typical or otherwise."

"In my humanness I would change it. I also know you can't go against God and I believe He has created Justin and I know for a total fact that I am a better person because of Justin. And I do love the way he looks and his face when he smiles--that is the highlight of my day. When he asleep at night, I can't wait to see him again. I could go on and on about his beautiful eyes but I know you all understand!

But like I said I would take it away if I could. The health stuff is big to me. While he appears very healthy, I don't think DS truly is. Though I don't like to think on it, the extra chromosome is constantly doing stuff in their bodies besides the personality stuff. My little guy is developing slower and his body is aging faster. This stuff tears me up and plays havoc with my budget as I try to feed him the best food and give him the best supplements to counteract that chromosome. And it also tears me up that I can't afford what I would like for him.

Life is so full of challenges. I would love to take some of those away from him. Its hard to think he will always have to relay on others but in God's plan maybe that is not such a bad thing. And truly whatever happens with the health stuff, I do have a peace it will all be alright in the end.

Its a hard question because really none of us have the choice and we all do love our children so much!"

"For Katie's sake: yes, in a heartbeat.

For my sake: no...I have grown and changed so much and I am profoundly grateful for the journey. Plus, I just plain old like her the way she is! Smile"

"Change her? No way.

Help her? That's a question my dh and I have talked about. I think there are a wide range of "treatments" coming forward that we all will have to think about and decided if risks outweigh rewards. Yes, I think we will help her be the best she can be, and as healthy as she can be.

I've heard too many adults with Down syndrome say some version of the words "I have the best life ever" to think that a total change in essence is a good idea. The rest of us need to get more of what they have, IMO. And if I could get it, I would."

"YES! I come from a place where I am watching her deal with tremendous pain on a daily basis. DS has caused her to have a higher risk of having this pain. I want to see her better whatever it takes. So yes, I would get rid of it to hopefully rid her of the health problems she is currently experiencing. I would get rid of it for the health problems she COULD experience in the future. I see Avery the way I want others to see her...she HAS DS she IS NOT DS. So yes, I would take it away in a second. DS is NOT who she is, it is what she has. I think she would be amazing with or without it!"

"Yes...I would. I have watched Zack is so much pain over the past year and a half with colon issues...2 colon surgeries at 7 weeks old and one open heart. Then in the past year and a times under for colon surgeries, 4 of them long surgeries. I would give anything for him to not have to deal with this.

I read somewhere that a parent who watches their child fall asleep in their arms with anesthesia ages significantly more poor DH"

"Well, I see an amazing kind of joy and wonder that Aleena has brought to our family and extended family. I've seen her inspire a kind of love from family members in a way that none of the other grandchildren/nieces/nephews seem to do. I've heard my mom tell a stranger that Aleena is the best thing that has ever happened to us. There is something so different and amazing about Aleena. So, I'd have to say no. However, if I could, I would snap my fingers to make communication skills easier for her."

"Nope..I just cannot imagine Kennedy any other way!"

My friend Shelley said, "
Well, my obvious answer is no because if my boys had been born with the one less chromosome, they wouldn't be mine right now!
But, if I had the opportunity now to change that, I wouldn't even have to think about it.....the answer would be no. I don't believe that God makes mistakes. I know that my boys have a lot to offer the world and that their lives will impact more people than I can ever imagine. There are so many things about them that I love, and I have no idea what parts of that are because of the extra chromosome. So, no way would I change a thing. There are days that I really wish I could see the world through their eyes....the inexplicable joy they find in the smallest of things.....they remind me every day to slow down and appreciate the little things in life. They add so much to my life and I wouldn't change it if I could."

"For me this is an easy one! I would not take away Erin's extra 21st anymore than I would take away any other genetic trait that she has, as that is a piece of her that God created. I trust He knows what He is doing Smile. I would also not wish for my other kids to have T21 because that is not what God intended for them. I want what God wants. Over the past 22 months, my hubby and I have felt incredibly blessed to have our little Erin, as we believe she is a gift not only for us but for the world. Yes, our kids are hidden treasures! We sure have grown to love that little something extra!"

"My husband and I have had the conversation many times, I would not change it, it is Noah, there can never be a separation. It makes him who he is. I know without a shadow of a doubt, that this is God's plan for Noah. I understand Kayla's point, we all have concerns of leaving them here to live in this world without us. Maybe I would just change the rest of the world, instead. Very Happy"

"I would never want to change Nick's diagnosis...maybe the medical conditions, but not the extra chromosome.
What I wish WOULD change is the way the world views him. I pray about that too, that God would one day soon open the eyes of everyone to see that the extra chromosome is a gift and a blessing and not a mistake.
I think all of us would agree here that they become our teachers, not the other way around."

"No, I wouldn't want Jack to change; he's perfect and has touched many lives and has certainly changed me; made all of us better people without a doubt. But would it make his life better/easier without that "something extra" that I love? Is it selfish of me to want to keep him the way I love him?

I'm very thankful this isn't a decision I get to make! Very interesting question but I'm afraid I don't have a firm answer."

My friend RK said, "Since I don't know what other challenges Braska would face if she were a "typical" kid, I can't really be sure she'd be better off at all. So I agree that I'm glad I don't have this decision to make...but if I was going to have that choice today, I wouldn't change her. How do I know what parts of her crazy sweet personality, constant smile, and easy going nature are connected to that extra chromosome? I have to trust that she's exactly as she's meant to be, which I do believe, so I wouldn't take it away."

My friend Qadoshyah said, "I would answer no as well. My family has never talked about it, probably because we've never thought of it. He would not be the same person if he didn't have the extra chromosome. He brings us all so much joy and we all could learn so much from him. The only thing I wish could be changed are some of the things he struggles with - mainly his speech delay. I can't wait until the day he can clearly say as many words as he wants! He has a few words he says and he communicates with us well most of the time.

After all, God is the one who created my brother with the extra chromosome."

"My husband and I have talked about this too. I would not change Kasen if I were given the opportunity. I do sometimes wonder what he would look like, etc. without the typical Ds characteristics, but that is just out of curiosity, not out of a desire to change him."

"I do want life to be wonderful for Kasen, as I do for all my children. But I feel God does not make mistakes and Kasen is perfect who he is. I also feel that Kasen will have a wonderful, full, happy and fulfilling life. I always say that I think he will be my happiest, most well adjusted child. Our kids are blessed with not facing the same issues our typical kids do, such as drugs, alcohol and premarital sex. Not that this can't happen to our children, it just doesn't seem to be something they struggle with. With my eldest 2 now "dating", I am glad my son may wait a bit longer in this area of his life. Just some other things to think about and be grateful for."

"I don't have a simple yes or no answer.

Partly yes, partly no. But mostly, my answer would have to be yes.

I would never want to change Oliver. I think he's perfect. And I couldn't imagine him without his cute little ears that are slightly bent over. Or his perfect brushfield spots. Or those adorable pudgy hands.

BUT...I would, in a heartbeat, take away all the, shall we say, unpleasant side effects. If I could take away his sensory issues. Or his speech delays. Or his need to see more specialists than a "typical" child. Or if I could take away his increased risk of leukemia...then YES. I WOULD change those things.

But to me, Down syndrome is NOT Oliver. It is a PART of Oliver. A piece of him. So taking away Down syndrome would not change HIM. I sometimes, in my mind, compare Down syndrome to....cancer, diabetes, heart disease, etc. Hardly anyone would choose to not treat those things in their child. So when I look at it like that, then my answer is YES. YES, I would take away his extra 21st chromosome if it meant I could keep my Oliver but he wouldn't have to deal with some of those things that can go along with Down syndrome."

My friend Courtney said, " the short answer. However if it meant getting rid of the heart defect and lack of communication....hmmm that would be tempting!
BUT Koby is Koby Down syndrome and all and I love him more for it!!"

"There was a time I thought I would take it away if I had an Easy Button. But since then I have grown and have realized AJ is perfect as is. My kids put it perfectly when they talk about AJ. Many times they have said, "What could be wrong with going through life with this much love in your heart?"

What about you? If you have a child with Down syndrome, what would you say?