Well 2009 is almost to a close. No exciting New Year's Eve plans here other than spending an evening with the family - which is very nice and the best way to bring in 2010. To tell you the truth, even when I used to go out on New Year's Eve I never had a good time. One time I was almost stuck waiting in line for the bathroom at midnight because there was just too many people. That would be a horrible way to bring in the New Year.
So today I am thinking back on 2009. Will this be the year that all I can remember are bad things like IS, relationships tested, tears, giving your daughter shots of a very expensive drug that made her look and feel miserable?
Well these will be stuck in my mind forever I am sure, but 2009 was full of good things too...
Great support by some people in our lives - some I have met in real life and others I have not. This year really showed me the beauty of support. I have learned that close relationships should be founded in support and if you don't have that, you have nothing.
Our family vacation to South Dakota - the kids loved it and looking back on the photos I see just how beautiful inside and out my husband and kids are. In fact, we had a lot of adventures this year and we are very lucky for these opportunities.
Participating in our second Down Syndrome Awareness Walk - the DS community is full of such wonderful people and we are blessed to become a part of it. My life is better with having DS in it.
Employment - I am so lucky to have two new part-time jobs that I can be proud of and not only help others but learn so much myself. I am also so lucky to have my full-time job and my other part-time job that both provide our family with stability and much needed money. I appreciate the relationships that I have developed through both of these places. All my employment opportunities are blessings given this economy.
There are probably a lot more that I am forgetting, and I recognize that 2009 wasn't all bad. I learned a lot. But given the last few months, I am happy to start a new year and hope for nothing but good things in 2010.
The last few days I have been on a scrapbooking retreat - a nice way to relax and catch up on capturing memories for the kiddos. My friend Wendy brought a "Would You Rather" book along to the retreat and periodically posed questions to the group. This sparked some interesting conversation to say the least.
At the time of the retreat and Wendy's questions, I never really made this connection, but just right now a memory of something comes flooding back.
It was right after I came back to work following maternity leave. Quinn was just a itty bitty baby. I had a client who out of the blue posed this question to me, "Would you rather have a child who was (insert the r-word) or incarcerated for life?" You see, this client was incarcerated and had disappointed his mother. He was concerned about which direction he would go in the future. Furthermore, another one of his family members had a child who passed away who had some difficulties that got him thinking about the other half of that scenario. So this was something on his mind. It made sense to him to pose this question to the woman he started opening up to.
Here was a person who was asking a question just as a hypothetical situation with no idea that I, the person sitting on the other side of the desk, was actually encountering half of this scenario. It was one of the most powerful moments of my career. I took a deep breath and informed him that I prefer the term cognitive disability and explained that for me personally, it would be more difficult to have a child who was incarcerated for life. We went back to talking about his personal situation. This is why I love what I do - it really challenges me and makes me learn, think, and grow.
But to elaborate more on this situation now (in homage to the wonderful analyses of Wendy's Would You Rather questions), my personal opinion is that it would be more hurtful that the cause of your child's difficulties would be because of their own self and choices. I know there are generally other factors that may coexist with delinquency/criminal behavior- like socioeconomic ones - but in my Would You Rather scenario I think it would be because my child decided to do some illegal behavior without any conceivable justification. This would hurt more than the situation being because of outside forces - like a random event where there is an extra 21st chromosome.
But I think in both situations the parent may feel responsible. Even when it is random like that 21st chromosome, why do we feel guilt when there was absolutely nothing we could have done? I know from personal experience that we do, and there are times that those who have a child who engages in illegal behavior also have no ability to do anything about that either.
What philosophical discoveries we can have from "Would You Rather" questions!
This Would You Rather question is more realistic than some from Wendy's book - let's face it, I will not be given the option of sleeping with Superman or Batman any time soon... But this has all got me thinking about my values, what I see as being important, why I make the decisions I do or why I don't make the decisions that I need to make.
I think if you have the ability to make certain choices, to obtain certain accomplishments, to live your life in a meaningful, giving, loving way, you should. Maybe this is why the incarceration part of the question would be worse to me - the child had the assumed ability and didn't live up to that ability. However, I don't sit on my high "princess" (inside joke) horse and claim to know the answers and live up to these standards. I need to look in the mirror and consider if I am making the choices I need to and living the way that I want to. I know there are changes I need to make for myself personally now - they aren't easy but I have to do them. Wow this occurs at the best time of the year - the new year - time to reflect and work on oneself. What are the chances of this?
We went to my parents this afternoon for that side of the family's Christmas celebration. Then after a long drive back we went to church and opened up gifts here at home. We have to go to Neal's parents tomorrow (another long drive), so it was so nice have a quiet night home after church. Everyone put on their new PJs and we just all relaxed. Something I needed. Something we all needed. Quinny crawled around and played as we opened gifts. It was just so nice. What a Christmas blessing that is.
The sermon tonight was about Jesus' birth (of course). Our minister talked about how so much joy came out of such a terrifying time. The terrifying part was King Herod's threat to kill off all the newborn babies. I started to think about this journey that we are on. First we were terrified about the diagnosis of Down syndrome. But out of that came the great joy of Quinn. Had I known then what I know now, I wouldn't have been so afraid - but what can you do about that. Then came the terrifying journey of Infantile Spasms. But now we have the joy of seeing Quinny crawl and do new things every day. Since the treatment, something is now different with her, she is so much more active and purposeful in what she is trying to do. It is a joy to see.
Had it not been for these two things (DS and IS), I would have really not have understood the sermon tonight. So I do appreciate the better understanding I have, but for the record - I still hate IS. DS isn't that big of a deal to me and has actually become my friend.
As I am typing this, I hear Quinny in her crib two floors up - clear as day. She is babbling. It is the cutest little sound to hear. She has been doing great. She is moving around so much lately - all around the living room and even into the kitchen. We actually have to shut the door to the stairway to the basement because she is so mobile. I honestly never thought this day would come. She is working on her crawling and getting stronger and closer to getting the hang of it each day. I saw her go a little ways to get her FAVORITE toy. Again, I honestly never thought this day would come. I am beginning to realize how much the seizures did impact her and now that they are gone how she is doing so much better. Things seem to be coming together for her lately. She loves it when we sing to her and when I start row-row-row your boat, she grabs my hands to do the back and forth thing - happiness!!!!!
The boys are gearing up for Christmas and I haven't even started my own shopping. Luckily Neal took care of the kids. This has been the most hectic year of my life. I am on vacation from my full-time job this and next week and wouldn't you know five of the ten days have gotten eaten up with work from two of my part-time jobs. Oh well, at least that is progress - I am not working the 70 hour week I usually do. I guess things aren't going so smooth for me because twice in the last week medical professions (my ob/gyn and chiropractor) tried to have a serious talk with me about when am I going to take some time for myself and slow down. I must not be a spring chicken anymore - ha ha - so I guess that is a sign that I have to maybe drop some weight and take better care of myself. That would help. Oh but to find the energy to get on the treadmill after working 14 hours - that is another thing.
Today Riley turns nine!! Happy birthday to my first baby boy. I know I can be strict and hard on you sometimes, but it is all because I want you to turn out to be the great man that you can be. Everyone always says what a great kid you are - so smart and caring. I am proud of you and the boy you are becoming. Have a great time at your roller skating party.
Here is a story that I wrote about you two years ago: My Rock, Riley
The other day I wasn’t feeling well, something that is out of the ordinary since in the craziness that I call my life I have little time for such things. I was sitting on the recliner in the living room and Riley, my then seven year old son, came over, said nothing, but laid his hand across my back. This moment encapsulates what Riley is. He is a loving, caring child, who is sensitive to the needs of others. This is not to say that he is a saint, oh believe me, he has his moments, especially with his younger brother, Aidan, but overall he is the most loving child you will ever see. You see, Riley wanted me to write stories about our family. He loves these stories, but he wanted me to write Quinn’s and Aidan’s stories first. Riley wants to give to others. He is my rock. And now it is the time for me to tell him what he means to me, his mommy.
Riley entered my world on December 13, 2000 after my water broke at 5 in the morning. We weren’t prepared, running around the house, all because he came three weeks early. Riley is always looking out for me though, as he was by far my easiest birth experience. Imagine your first child being so easy. He came at 4:35pm 7 pounds, 7.5 ounces and 20 inches long. He had it all, including hair and a dimple. Neal was so proud to have a son – I was just proud to finally have my Riley here and to not have the nightmare of labor that everyone always talks about. Riley was a very good baby – again looking out for us. He slept through the night at eight weeks old. He was easy to get off of bottles, to potty train, to do anything. But there was one moment…I remember the day when Riley had to be around six months old. He had not slept all day. Around dinner time Neal and I started getting frantic – we would rock him, put him in the swing, even driving around town with him. Nothing worked. Then all of the sudden he let out the BIGGEST burp imaginable and immediately slumped over. A memory sealed in my mind. Looking at him now, I see that same little baby deep down inside of him.
Other memories of Riley. Around three years old he started talking a lot about his eyes. Something that he probably heard from the teachers at school – his big brown eyes, where did he get those? I had heard the same thing when I was a kid. We talked about how he got those eyes from me. And before me, his grandpa Robert. Later when he was four, he told me that after I die, all he has to do is look in the mirror and he will see me in his eyes. I cannot tell you how much that filled my heart with happiness. He gets it. He gets that I am always with him, even when I am not physically present.
At three is when Riley also learned he was going to be a big brother. So proud he was. He wanted a little brother. He was elated when the ultrasound showed it was a boy. He was so happy the day his little brother Aidan arrived. We have a photo of him proudly holding Aidan. The next day, he had to take that photo to preschool. He was the one who first called Aidan “Aidie.” Now Aidan refers to himself as that – Riley has had a big impact on our family. You can tell that Aidan really admires Riley when they aren’t fighting as boys do.
Speaking of photos, Riley loves photos. He loves memories; he loves history. He was the reason I started these stories. He would ask me to tell him this story and that, why not write them down? He loves looking at photo albums. He has used photos to show that he is proud (with Aidan’s birth) and to help him through rough times (carrying one of his dog, Festivus, when he died and then becoming upset when he lost it on a field trip). Riley loves history – he wants to know about this and that. I remember once when he asked about slavery. He talked about how that wasn’t right and how he is going to be better than that to people who are different from him. My Riley is going to be an awesome man some day!
When he was almost four, he started talking about getting a guitar and becoming a rock star – this is an aspiration that he holds even now, three years later. He started guitar lessons at age four, and has written over eight songs. He has recorded some of them with his guitar instructor. Riley is so creative. He loves to compose, write, and create art. He is a sensitive artist through and through. I remember driving in the car and talking to Riley when he was four years old about the various ways to handle teasing or bullies. He would talk about what is right. At home when he would get upset, he would take his own break, or “time out.” He is a psychologist’s dream kid. I am so proud of him, although I must admit that some of his songs are about his mommy yelling (not very good for a psychologist is it?). Riley sometimes gives me a reality check. I had to cut back on the yelling. Now his songs are mostly about school.
In the first grade, we are told by Riley’s teacher that he is helpful, caring, and makes a good choice in friends. He will try to mediate disagreements between friends. He will share. He is a little shy at times, but watches and notes what others are up to. Riley sees everything, hears everything. Just when you think he isn’t listening, he is. He wants to know what is going on. He loves to learn. His reading is taking off, his writing is awesome, and he loves math (just counting his money alone is a joy for him). He saves things. He is very responsible.
When I was pregnant with Riley’s little sister, Quinn, he was so excited. He said he wanted a little sister because if he had another brother like Aidan, things would be too wild around the house. That made us smile. There is Riley, always looking out for us and the furniture. Well he once again got his wish. When I found out prenatally that Quinn had Down syndrome, Riley was once again my rock. He told me that it doesn’t matter, that she will go on to do great things, that everyone has things that are difficult, after all. When I would go on to the internet to look at photos of families with children with Down syndrome or when we would meet local families, Riley always talked about how the kids were so cute or would move around so fast. When Quinn arrived, Riley just LOVED HER. He would hold, hug, and kiss her over and over again. This hasn’t stopped. Riley talks about how he will help her, but not too much because she has to learn to do things on her own. He also talks about how he will help her when he is an adult, when we are gone. It is remarkable all that Riley understands. He knows we need him.
So when I say that Riley is my rock, I mean a lot of things. Riley has brought so much joy to my life. Riley illustrates the best of me. Riley has said the most remarkable things when I needed to hear them, or has laid his hand on me when I needed him the most. Riley is also my “rocker,” my rock musician. He often says that he wants to “rock.” Right now as I am writing this, I hear him on the keyboard. My heart is filled with pride. If Riley decides to become a rock musician someday, that would be great. If he doesn’t, he will forever have at least one number one fan that will enjoy his accomplishments no matter what they are, his mommy.
After today Quinn has four more shots! We are moving into the home stretch. I am so appreciative to be here right at this moment because, quite honestly, we were through hell and back.
The only problem now is that I am paranoid about seizures. I am on high lookout when with Quinn for anything that might be interpreted as a seizure. I haven't seen anything, but it is nerve wrecking to be watching and thinking about it. How long with this last? Hopefully not so long - at some point I would think that I can let go of this.
Oh and Quinn's poor legs. It makes me sad to see the state of her legs - the result of eight weeks of injections. I hope she heals fast, so that reminder is no longer.
But for anyone going through this horrible experience of IS and ACTH - just know that it can be over at some point. We are getting a fantastic present just before Christmas!
I have been thinking a lot about happiness since I watched the documentary Including Samuel last week. There is a part in the film (I apologize because I don't have it 100% correct here) in which a parent (maybe it was Samuel's mother - oh man, my memory this week is shot) says that the biggest thing that they had to learn about acceptance of their child who has a disability is the importance of just being grateful that they are happy, whatever that may mean. What makes your child happy can be completely different than what makes you happy.
I have my own interpretation of what happiness means to me. It also varies depending upon the moment. Right now happiness may mean a day of which I don't have to do work like grade papers, write reports, etc. Ten years ago happiness might have meant doing these things because I was just starting out in my career and wanted to be successful. I am struck by the idea that my interpretation of what happiness means - basically marriage, children, career, education, perfectionism, etc - isn't necessarily what Quinn's interpretation may be. Let's say she is lower-functioning on the DS spectrum (often a worry of mine) - maybe I have to realize that if right now happiness to her is playing with her bell and not learning to walk across the room - that is ok. Quinn's happiness doesn't have to equal mine. It is more important that she is happy and that I love her unconditionally.
On this journey I have struggled with this because let's face it, I am an overachiever, a workaholic, and a perfectionist. To me I love excelling - getting the top grade, seeing the most clients, having four jobs, doing things that others may not be able to do. Just right now I would like to take a break from reading papers and reports (oh man). I am not saying that I am better than anyone - there are plenty of things that other people do that I could not do (being a stay-at-home mom for one - I just think that would be VERY difficult for me - it would not be a pretty picture and I would suck at it). It is just that Quinn is teaching me to re-think what I think happiness is and be open to different interpretations.
By the way, I recommend Including Samuel - it is a great film!
This has been quite a journey with IS and Quinn. We are getting closer to the finish line (hopefully). Someone shared this clip on a forum that I go to. It is absolutely beautiful. It just goes to show that parents of children with disabilities know unconditional love and commitment so well. We go any distance for our children.
Now she has an ear infection - so while she has been on ACTH she has had thrush, a bacterial infection, an ear infection, two high glucose urine tests, a positive blood in the poop test, a puffy face, a huge belly, disrupted sleep, and four weeks of being angry, crying and doing nothing. Maybe I should make a 12 days of Christmas song, but make it the 8 weeks of ACTH. It may become a number one hit - ha ha! That would be fun to do it I was feeling creative tonight and not so darn tired. If someone steals my idea, I want credit!
We will be GREATLY happy when she is done with it - TWO WEEKS FROM TODAY!!!!!!!!!!!
"How do we value life? Count all the fingers and toes. Look at the head and make sure it looks like every other kid's head. Think about the brain; make sure it will work like everyone else's. Is the value of life just the sum of its parts?" (Mooney, 2007, p. 191).
This year our letter is going to differ from the past. It is all about how we measure what is valuable in this world. Sometimes it is in the things that everyone else considers a nightmare that you find the most value. A lot typical stuff happened this year – vacation, work, play, volunteer activities, and laughter – but it just seems that we can only focus on the last few months, which teaches us this lesson.
Our world was turned upside down in October when Quinn received a diagnosis of Infantile Spasms (West Syndrome). Don’t let the term spasms fool you – this is a very serious seizure disorder. Lucky for Quinn she has Down syndrome! We bet many people in the world would be shocked that this is something to feel lucky about, but it truly is. Down syndrome can help Quinn’s prognosis and response to treatment. That extra 21st chromosome has helped us in a lot of ways, this being one of them. October was left with two hospital stays, learning how to inject our beautiful daughter with medication that costs $30,000 a vial, and a little hospital station being constructed in the corner of our living room. November was left with a child who would not take naps, who was screaming and crying in pain from the medication, who wouldn’t play, who wanted to be held constantly, and who started, slowly to get better! Once again we are thankful for these things. What? How can one be thankful for the bad? It is because it is through the bad that we truly realized how blessed we are. It isn’t until your child doesn’t smile or interact anymore that you see what an actual blessing even a smile is. Sadly, it sometimes takes things like that to make you realize just what you had. We are happy to say that Quinn’s smile has come back and we will never take it for granted again. For December, we are looking forward to witnessing Quinn get back to her old self as her medication tapers off. We optimistically hope that she stays seizure-free after her medication ceases on December 21; that would be the best Christmas present we could receive. Quinn has taught us so much, and we are lucky to have her in our lives. Going back to Mooney’s quote above, it is not through the sum of her parts that we find her true value; it is through Quinn in totality that we see the greatest value possible.
It was a blessing to hear our boys bicker and fight this year. What, fighting is a blessing? Yes! It shows that Riley and Aidan are healthy, opinionated, and strong. They have kept each other busy and occupied during the last few months. Sure, they don’t always get along – but they are brothers! They fight, get it over with, admit to what they did, are honest with one another, will forgive each other, and then welcome one another back with open arms. There is a lot to be learned from that series of events. They have handled the situation with Quinn with such grace, understanding, and love. They both love school (Riley is in the 3rd grade and Aidan is in Kindergarten). They love sports (soccer and baseball for Riley and t-ball for Aidan) and video games. Aidan still talks about marrying mom. Riley still loves to learn more than anything else. The boys made us laugh and smile so much this year! They also made us forget about things that were worrying us, especially when we had to break up a fight. We are blessed to have our beautiful sons in our lives. Again, their true value is not in the sum of their parts – it is much more than that, they give us so much.
It was a blessing that Neal was laid off of work a few years ago. Again, most people may think why would we consider this a blessing, but it is really Neal that helped Quinn get through all of this – he was in charge of the injections (every daddy’s dream, right?), he took her to the doctor countless times, still tried to carry on with therapy despite her mood, and, most importantly, held and loved her. He juggled all this with spending time with the boys, taking care of the house, and keeping his position as Head Trustee at church. Sure, everything wasn’t perfect – sometimes things were missed – but considering all that he had on his mind and on his plate, Neal did a pretty stellar job. Karyn helped as much as she could while juggling many things too, such as continuing to work four jobs (relax, only one is full-time). We both became experts in multitasking. Again, we didn’t do everything perfectly, but we did the best we could and appreciate the understanding, help, and encouragement from those who love us.
We aren’t saying that every time people can find something good in something bad – sometimes it may be very difficult and/or impossible; our hearts and prayers go out to those of you that have gone through something especially difficult this year. In addition, our story isn’t about hiding from your difficult moments and feelings of anger, sadness, and fear – our life is not picture perfect and we had our fair share of this in 2009 (not sure if you would want to read that letter). But the one thing you learn on this journey is the love and support you do have in your life. It will test some relationships and enrich some others, but in the end the important part is that you see the beauty in how some offer the greatest support to you. There is nothing like being built up and supported when times are tough. This support is what has gotten us through. Little things like a hug, a card, an email, or a favor. Support doesn’t have to be fancy; it just has to be present and full of love. We hope that everyone feels the blessings of support, love, and acceptance in 2010.
We wish you a very Merry Christmas and Happy New Year!
What would it be like if you went across the US on a quest to find out what were the lives of all the individuals with your name. This is what Angela Shelton does in Searching for Angela Shelton. She looks at women in the US named Angela Shelton.
It is a very powerful documentary.
One that speaks to the impact of violence. Angela Shelton found that 24 of the 40 Angela Sheltons she speaks to are the survivors of rape, childhood sexual abuse, and/or domestic violence.
Wow.
If you haven't seen this film, I highly recommend that you watch it. Get out the tissues and be ready for a very intense experience. Angela Shelton even tries to confront her abuser - her father - in the film. Wow.
But there is more that I want you to think about...I understand this may be an overload of information, but it is important to me (and since I mainly write this blog for myself anyway, I am going to say it)...
Individuals with disabilities are abused more than individuals without disabilities. What about the Angela Shelton's who have a disability - how would they fair? The clear percentage of risk of abuse for those with disabilities is not known given the difficulty studying this area - but it ranges from 22% to 70% will experience some form of maltreatment. One in three children with an identified disability for which they receive special education services are victims of some type of maltreatment compared to one in ten children who are non disabled. Individuals with developmental disabilities are 4 to 10 more times as likely to be victims of crime than others without disabilities.
Why do I share this? To freak myself out? Ok that is happening, but there is another reason. I want someone to be their voice. I want someone to be the Angela Shelton of them. I love to find out about advocates in this area - and if anyone knows of anyone who has talked about this issue or has made a film about it - please let me know!
In the meantime, here is the trailer for Angela Shelton. It is an excellent film.
Recently I ordered some movies on the internet. Mr. Blue Sky is a movie I have heard about some time ago, but finally purchased and watched. Tears flowed. Not sad tears, but the movie did impact me because it speaks about two worries I have -
1. How will Quinn be perceived by society? (AKA the fear about whether she experience a lot of discrimination)
2. And will she be able to find someone to love?
Women have made great strides in the world. There is still a ways to go, I know because I am an nontraditional woman myself. My friend Wendy started a blog about women's issues and I am proud of her (check it out - it is under my blogs). But imagine your daughter as not facing only bias because she is a woman, but also facing more hurtful discrimination surrounding a disability of which many others can see and have historically shown a great bias towards. It is the latter part that is on my mind - because let's face it, the world has been and is currently cruel in a lot of ways towards those who don't meet the standards of "normal." The fact remains that the majority of women in the US who receive a prenatal diagnosis of DS in their child go on to abort that child because of the diagnosis - so what does this say about the value others see in someone like my child? I am not talking about pro life or pro choice here - I am talking about the fact that planned pregnancies are terminated solely because of a diagnosis of DS and individuals not wanting to raise such a child. That is a difficult thing to swallow when you look at your little girl and know that is happening. Yes, I know it really shouldn't matter what society thinks when my family obviously sees infinite value in Quinn, but still it is something she has to deal with as she ages and ultimately becomes a young woman. And if it impacts her, it impacts me.
Back to Mr. Blue Sky - this film speaks about these issues in the story of a girl with DS struggling to find acceptance, love, and inclusion in society. It wasn't an Oscar performance of a movie, but it was an excellent film. Ashley Wolfe and all the actors with DS were beautiful. If you haven't seen it, check it out...
Quinn has been interacting and playing more as the medication tappers, but the last three nights she has decided to have a party at night with her daddy as her main invited guest. She wakes up and then last night I heard her playing like crazy with her rattles. At 3 AM. Her daddy is awesome with going with the flow on this, as it is impacting him the most.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.
I am loving mom of three children, two boys and one girl. Riley is age twelve; Aidan is eight; and Quinn is five. I have been married to my husband, Neal, for 14 years.
Down Syndrome Awareness Month Blogging Challenge - I DID IT 2009
Deep Thought by Jack Handy
“If you define cowardice as running away at the first sign of danger, screaming and tripping and begging for mercy, then yes, Mr. Brave man, I guess I'm a coward.”
