Friday, January 30, 2009

Fresh View

9 What are your thoughts?
First of all I want to say thank you for all the kind words and the support in regards to my last post. I really hesitated to weather I should post that or not. Then I remembered the e-mails I have received where some people have shared with me that it seems like I have it all together, and I never have hard days. Well, I am only human, and I do have hard days. It is only fair for me to show that I have weak moments :)

I did want to talk more about the MR label.
If you look in the dictionary, "retarded" means delayed. I have no problems with that, Nichole is delayed, and therefore, I could say she is retarded. BUT, now a days, the word "retarded" carries a very different connotation. It is the most offensive word in the English language. It is degrading, repulsive, and used to offend people. This word, that refers to my daughter, is used in order to describe something stupid, funny, ridiculous, etc.

In my post on Health and Down Syndrome, I addressed this issue a little bit.

The only "R" word that a person with an intellectual disability deserve is the word "Respect." Next time your friend is acting silly, or someone does or says something stupid, please, do not say, "You are such a retard, "or, "That's retarded." When you say that, you are talking about a people group, a people group that includes my daughter, and they deserve the same respect that you and I do. Before you use that word, think about who you are referring to, what you are implying. Would you say, "You are such a Nichole." Or even more, would you use a derogatory name that is associated to a people group. No, you would not. Because you know that it is not appropriate, you know that it is degrading and wrong. The word retarded is the most offensive word in the English language. It is a word that is used to describe something stupid, something with a fault, something with a mistake, and it is said in expense of my daughter. These are the people that need to be respected, but most important, valued! Because they are God's creation, loved by God.

And this is the reason why it is so hard.

HOWEVER...

My friend Lisa helped me talk through this. Lisa has adopted four children with Down syndrome. When she has something to say, I really listen because I value her thoughts and respect her. She has walked this road a little longer, and four times :) Lisa also has a brother with Down syndrome and her sister has also adopted a child with Down syndrome. If anyone knows about life with Down syndrome, it is Lisa! You can visit her blog if you want.

Lisa challenged me, and this is what she had to say:

Just wanted to make sure you remember that your daughter (as well as the rest of our children) should be the ones who show people that being mentally retarded does not mean what the world has decided it means. They are wonderful because of their diagnosis, not in spite of it. Unfortunately, when people use that term in a negative way, usually they WOULD include our children in their stereotype...even if they knew them. That's why I say the term "mentally retarded'" is not to be avoided, it's a blessing that most people don't understand. Like the name Jesus Christ. Most people use His name in a terrible way, but that does not mean that His name is something to be avoided.

Our world puts so much emphasis on scholastic performance and ability. It's time that people stood up and talked about how people with mental retardation (or disabilities) are valuable, even without an assigned grade or diploma. Of course that probably won't happen until we get to heaven, but I do think our kids are here to show people that truth (even though most people will miss it).


I am challenged! She has definitely given me something to think about. I cannot say that I am okay with the label, it still bothers me, but hopefully I continue to grow and learn. Praise God for bringing wonderful friends into my life :)

Thursday, January 29, 2009

There are Hard Days

12 What are your thoughts?
I have discovered in the last couple of days, that even though I love the journey we are taking because of Nichole's diagnosis, there are still some days that are hard. Actually, there are days that are very hard.

We are currently in the process of applying for an MR waiver. MR stands for Mental Retardation. That is right, we are basically in the process of applying for a waiver that will label my daughter as mentally retarded for the rest of her life.

Why are we doing that? Because this is the only waiver available in which she can get the services that she is entitled to. If we chose the other waiver for which she would also qualify, we might have to wait for two years! We have heard from some providers that things might change, and if she is not in a waiver soon, she might never get it.

In the "race" of time, there is no waiting list for the MR waiver. Can you believe that? Nobody is in line waiting to be labeled as mentally retarded!


Why is this so hard? Because nothing, nothing, nothing in me wants to give her such a label. I cringe at the thought of that. In order to qualify for this waiver, she has to have a psychological evaluation. This has taken us down the road of case workers, interviews, and developmental charts. Because I want her to qualify, I have basically painted a picture of my daughter that is not accurate, not because I have lied, but because all I have done is talk about all the things she cannot do and the things she has trouble with. Nobody has taken the time to ask about her abilities, but rather her disabilities.

I cannot even type this without crying. I have not only spent the last few days talking about the things that she cannot do, but I have really stressed those out. I have made it clear to everyone I have talked to that she is delayed in all areas of development, so why do they keep calling and asking more questions? What kind of advocate am I? I am passionate about teaching people about the beauty of Down syndrome, about all the wonderful mysteries I have discovered. I am passionate about showing people that the life of a child with Down syndrome has worth, value, and immeasurable meaning. But here I am, painting a stereotype, affirming it, all so that she can get the services that she deserves.

It has been hard on me. As a mother you can only do this so many times before your heart starts to break and you want to call it quits.

My child is NOT retarded! She is perfect! She has so much potential! Leave me alone!

I do not want my child to be called retarded, I hate that word, it is a word that is used flippantly and it hurts, this really hurts and most people don't understand what they are saying when they use it! People use a word that now will be used to describe my daughter in order to make fun of others and point out their flaws.

I hate the word retarded because of how it has been used. I hate it.

And the tears come fast.

Nichole is beautiful, she is smart, and her life has great value!

So here are the things that Nichole CAN do.

She can crawl, fast!
She can babble like no other! yah, yeah, hi, da, ma, pa, ba, bo, la, are some of the sounds she CAN make.
Her receptive language is very good and she follows commands and responds to signs(except for obeying when told "No" then she acts like she has no idea what we are saying)
She has about 15 signs (she does not always sign them, but she does understand them all)
Her social skills are above and beyond.

And there are so many more things she can do. Which makes it so hard to be going through this process. Yesterday was a very hard day. I realized, that other than initially dealing with her diagnosis, this has been the hardest thing I have had to go through with Nichole.

I feel like I am betraying her in some way, giving her a label that is repulsive to me, giving her a word that is sued in such a mocking and disrespectful way. I know this is what I have to do for her, I want her to be taken care of! But it is so hard, so hard for this mom.

I cannot wait for this process to be over with so we can just move on.

Monday, January 26, 2009

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

3 What are your thoughts?
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. Wink Angela 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 half...seven 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 quickly...my 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, "No....is 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! So...no!"

"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?

Tuesday, January 20, 2009

My Girls

8 What are your thoughts?

Even when going out to play in the snow, our little princess wants to dress up. This time, it was her butterfly wings.



Ellie really thinks she is a princess.


Great artist!




I just wanted to share some recent pictures of the girls.

Wednesday, January 14, 2009

Crawling

4 What are your thoughts?
It is amazing how something so simple is so exciting.
If you have not seen our video from the previous post, you have to watch it!

It had been 7 months since Nichole had reached a milestone. Sure, she had been signing, and making sounds, even pulling to sitting on her own,but for a major gross motor skill, which is huge at this age, we had seen none for about 7 months since she started to sit unassisted.

It is so exciting! Do you know how awesome it is to see your child crawl? To know that they had to work so hard at it, that it took so much effort, but they finally did it! I am swelling with pride!

"Does she walk yet?" is a common question we hear. No, she does not, but man you should see her crawl!

The joy we take in each one of Nichole's accomplishments is not easily described with words. It is far greater than it was with Ellie. Not that we were not excited when Ellie reached milestones, but we expected them, and they came...easy. With Nichole, we do not know when she will be able to accomplish something, she does it, in her own time, and the results of the wait are so overwhelmed with joy, with pride, with cheers!

A baby with Down syndrome. It means her development is delayed, but it also means that our celebration is doubled, even tripled! It means that we take note of every single new step she takes, every new accomplishment. NOTHING, is taken for granted. We witness miracles, and we know it! How great is that!

Monday, January 5, 2009

Happy 2009

7 What are your thoughts?

Just wanted to wish everyone a happy 2009.

Most people come up with resolutions for the New Year. I have resolutions, but I will not share those for fear of someone wanting to keep me accountable, and honestly, how many people actually keep their resolutions? :)

But there is one I will share. A simple one. One that overwhelmed me as I was holding Nichole at church. She was snuggled up close to me as she slept through the sermon :)

The pastor talked about the journey of life and I started to picture my life. Then I thought, what will be the "movie" that plays out when I stand before the Lord. Will I see that my life was all about me? Or will I see that my life was pleasing an honoring to God. After all, that is the only kind of life worth living. A fulfilling, rich, and "alive" life. A life full of adventure, of passion, of meaningful moments that are forever etched in our hearts. I want my life to be lived for the one who gave His life for me.

What is the simple resolution?

Love.

Love without bounds. Complete love. Unconditional love. Love that surpasses all understanding.

What a big undertaking, don't you think? A simple resolution, yet so hard! So hard, because I am so in love with...me.

No, I do not expect to succeed every day, there is plenty of selfishness in me. But I can ask God to help me. Not only has He demonstrated the greatest love of all, but He gives it in plentiful amounts, each day.

As I held Nichole, I realized that before Nichole, I did not know much about unconditional love. Sure, I knew God loved me that way, but I did not know much about how to give that. This little baby that to many seems to be "less-than-perfect," has shown me more about love than I ever knew. She might be our guide in teaching us how to love.

So every day, I will pray and ask God to teach me how to love, how to see other people through His eyes.

Our family will never be the same...because of love.

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