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.
Quinn is getting better with her mood, but today was a rough day. We think she was actually constipated and was very angry most of the day until she did the deed, so to speak. Then Neal did the poop test that we have to do (to see if there was blood in her stool), and it came back positive. She will be seeing the pediatrician tomorrow anyway, so the neurologist on call said just wait until then to get it sorted out.
She started smiling more this weekend. If I say "I love you" in a wacky way, she just starts smiling and cracking up. It is a miracle to see. She also loves it when we sing to her and that brings smiles (except when in a foul mood because of constipation). I also noticed something, if you touch her and she doesn't want to be touched, she takes your hands and move them back to you. It is kind of cool to see because it is showing her attitude. It is hard to think of her as a two-year-old because she isn't doing two-year-old things, but here it shows she has the spunky attitude of a two-year-old.
Hopefully things go well tomorrow and there are no additional concerns with her poop. What great things to update you on, but at least I had pictures of Quinn in her pig tails.
Tonight Riley and I selected our little one from Reece's Rainbow that we are going to sponsor for the Christmas Angel Tree. I just got our donation ready to go out in the mail tomorrow. If you haven't checked out Reece's Rainbow, please go HERE or to the bauble on the left. Reece's Rainbow helps little ones with DS from other countries find their forever families and avoid placement in mental hospitals where they won't receive treatment and will likely die at a very young age.
Please, please check this out - and please consider making a donation or telling others about Reece's Rainbow.
I often think about what if Quinn was born in another country (funny thought I know since she would be born to me and I'm here, but just bear with me and my strange line of reasoning). BUT if she was born in one of these other countries, she probably wouldn't have received treatment for IS and she would have regressed and had a horrible life. She would probably be laying in her crib all day with nothing to do and nobody to love. It really saddens me that other little ones are going through this. It is really happening.
Just to tell you a little about our choice, Ivy. She is an at-risk girl. Hopefully she will find a family soon, otherwise she will be moved to a mental hospital where there is no turning back and leaving after that. Ivy was born September 16, 2005. She has sandy blonde hair and blue eyes. She is described as a favorite at her orphanage. She walks and does many things independently. She has several words and is very active. She is healthy, with no heart condition. She is facing the institution, and she needs to find a family soon. Riley was drawn to Ivy and thought she was very cute. We are praying that she finds her family - she deserves that.
Also check this story out - it also involves a little one found on Reece's Rainbow.
If this 11-year-old girl could do something, why can't you?
There are so many things to be thankful for this thanksgiving - our family, the security and safety of our home, the beautiful people who have helped or offered support over the last few months, and how in this economy, work keeps coming in for me. What great things to be thankful for. But as always having a child with a disability (now times two disabilities), puts a whole new spin on things. The thing that I am most thankful for today is for the great EEG that Quinn had during her appointment. The neurologist informed us that it was "almost" normal. Not sure what "almost" means and for a split second I was thinking of becoming a smart alec and say something, but I took a deep breath and considered this a blessing. We might be ok. ACTH and the drama surrounding this treatment might have actually done the trick - it might have been the best decision we made in our lives. No, scratch that, having Quinn is the best decision of our lives because without that none of the rest would be possible. I am optimistic, the neurologist is optimistic, I think Neal is optimistic, but we don't know for sure if ACTH is the trick until she stops the medication. But for now I am SO THANKFUL.
The last thing you ever want to do is to knowingly and intentionally cause your child pain. Sure there are immunization shots and stuff like that, but those don't compare to the last weeks and all this hoopla surrounding ACTH. It is a difficult thing to decide to do this to your child. Plus there are no guarantees - it might not work at all. This was one tough decision. It is a decision that parents all around the world have to make every day. But then again, there are people who don't get to make this decision because of the cost or availability. All of this just symbolizes how thankful we should be. Quinn was able to try this treatment, we were able to have the strength to get through hell, the boys are able to have their lives back right now, and it is actually working so far. Some people don't even get any or all of what we have.
In addition, I have been BLESSED to meet such wonderful people on the internet who share this experience or who don't but have grown to love Quinn. They come from the DS and/or IS community and have been a great support. This is all something to be thankful. I also have wonderful friends and family who have supported us through this through by sending loving emails, phone calls, or showing in just little ways that they care. For this I am so thankful.
The list could go on and on. I just have to say I believe that every other Thanksgiving I was superficial in how I approached this holiday. Sure I would be thankful for the "usual" things, but I didn't feel it totally in my heart. Although this has been rough (and I still hate IS, but to clarify not DS), I get the meaning of this experience. I feel thankful in my heart - deeper than I ever did before. It is just there and I know it comes directly from my beautiful girl who at this time is seizure-free.
I was looking around on youtube again (I know, I am crazy with that) and I found another clip from Following Ian. I must find out when that movie comes out! I watch the other clip (the hospital clip) over and over. Surprisingly I don't cry, I just feel connected.
I just found this on youtube. It is from a documentary of a father who has a son with DS. I am not sure of the circumstances of them being in the hospital, but I can just say that I can so relate and LOVE this video.
I didn't get a chance to watch the Sarah Palin interview on 20/20 on Friday night. I came home from work and just crashed because of the very long work week. I did get to watch it on youtube though. You can check it out there if you didn't see the interview. Out of protest for the repeated violation of person-first language, I am not going to link it here. Check it out if you want, it was pretty easy to find. I would just think that professional people in the television industry would be more conscientious about using person-first language. Oops I forgot that individuals with disabilities are discriminated against every day and they don't often get the same press and voice as other minority groups do - silly me, just how could I forget (sarcasm dripping from my fingertips as I write this).
I have mixed feelings about Palin. Even though we aren't on the same side of the fence politically, she is a kindred spirit on this journey. I always have to see whatever she has going related to her son, Trig. She is another mother who received a prenatal diagnosis just like me and because of that there is some connection or interest there. I don't expect those who don't have a child with DS to get it - how can I be drawn in this way to someone who is so politically different than me? It is just that you gravitate towards the stories of those who have something in common with your experience. This tells you that you are not alone - something I battle all the time.
Anyway, I found the article (link is below) very interesting. This story - the story of her son's diagnosis and birth was very interesting. Check it out HERE...
Here is a quote from the story and her book:
"God knew me: I was busy. Got to go-go-go. I’d always yapped about how lucky I was that my kids were all healthy over-achievers, self-sufficient. Now, I thought, I’ve got a tough job and other kids who need me. I just couldn’t imagine how I could add a baby with special needs and make it all work.
Unless He knows me better than I know myself, I thought a bit dismissively, God won’t give me a special-needs child."
Drat...she had to ruin it at the end with the violation of person-first language. But I forgive that because the message here in this part is something I can SOOOOOOOOO relate to.
Ok politically I am different from Palin, but I recognize that she is like me in this significant way. She has found strength from having a child with a disability. And for this, I honor her 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).
I have a beautiful girl.
I value her beyond anything else. I get her value. I didn't need to go through this crap called IS to get the message.
But my heart is aching today. Right in this moment I feel pain in my heart. How can I go from peace to pain and back and forth? I thought I was in acceptance until this crappy thing called IS entered my world.
I used to think I hated DS, but DS is nothing. Nothing. Nothing. Nothing. IS is the thing that sucks. I hate it. There is no value in IS. I eventually found value in DS. My life was enriched. Now this blasted IS comes along. I want to know, what great thing is to be had from this experience?
My beautiful girl does nothing. Absolutely nothing. All day long. Tick tock, tick tock, an entire day filled with nothing - no advancement of development whatsoever. She is miserable. Will all eight weeks of ACTH be like this? But I feel stuck between a rock and a hard place because the ACTH is doing this, but the seizures need to be stopped or else worse will come along. I just don't know what I am going to do if this doesn't work. If we go through all this and those blasted seizures come back - then what? I will certainly crumble. But unfortunately I am not allowed to crumble because I have too much I am responsible for.
And now I am actually becoming jealous of people who have a child with only DS - their kids seem so advanced in their development over my beautiful, beautiful girl. I can't believe I am actually starting to feel this way. I am starting to not want to read certain things, see certain things that didn't bother me before - all because of this pain in my heart.
I feel alone. I feel like I am a parallel world even when compared to the DS world.
This sucks.
I hate IS. I hate it! I will never come to embrace it.
Even Mooney's quote screams IS to me - "Think about the brain, make sure it will work like everyone else's."
But there is value there. There is my beautiful, beautiful girl to whom nobody can compare.
I just have to try to have faith and survive this storm.
IS will always suck though - that will never ever ever change. I hate you IS.
In the race of life, things are slowly moving along in terms of Quinn's treatment. Another week of ACTH is almost done. Quinn still isn't very active, but the seizures do seem to be gone. Or at least I haven't seen any lately. Her day consists of crying, sitting, being held, and eating. Not much excitement going on. Very very rarely she picks up a toy and plays. Otherwise it is like focusing on time ticking on a clock. Tick, tick, tick....
Those on the flip side of us - those with typical two-year-old have new things that happen every day. They have talking, yelling, running, playing, laughing - the list goes on and on. Things move so fast. But that isn't our world. At least not this time. We had that twice before, but now we are in a different place. And strangely enough to those on the other side, we value what we have even if the experience isn't so faced-paced and flashy. I really value it this time around. The last two times with the boys I really didn't know the beauty of what I had. But oh boy, now I do. This side of the experience is a deeper and richer experience that only those who have walked in our shoes ever really truly know. I can try to explain it, but those who have been there know it in their heart in a way that words will never explain.
I just feel that if I didn't have Quinn I would be so superficial in terms of how I see life. I just think there would be so much that I just would not get. I cried my tears with the DS diagnosis and then I had to pick myself up and keep going on with life. Then I cried my tears with the IS diagnosis and now I am picking myself up yet again. Who knows what the future holds. You are not entitled to anything in this world. And yet so much is taken for granted.
So our life now is not fast-paced and flashy. We are on the slow and steady side. But that is actually a blessing. Today I am at peace with things. Tomorrow there may be another storm, so I need to enjoy the slow and steady right now.
By the way, I found this story which also shows this idea...happy tears...
I like to get up early in the mornings and do some things in the quiet of the house. Well this morning, right now, I hear Quinn screaming and yelling. Screaming is breaking the silence. This is just so draining and the sad part of it all is that I am not even feeling the brunt of it (as Neal is the one who spends more time listening to the screaming). I can only imagine how this is for him. On the positive side, we didn't see any seizures yesterday. On the negative side, Quinn has developed a bacterial infection in her throat and thrush all within the last week because her immune system is run down from the ACTH. On the positive side, we started the dose for the third week (out of hopefully eight). I wish I put stock in an aspirin company.
I have a lot on my plate right now. Just too much. My heart aches for this though - the little girl above is in a bad situation right now. This is Lera, a beautiful little girl with Down syndrome who is in an orphanage in Russia. Very very soon if she is not adopted, she will be sent to a mental institution. There will be no way she can leave then and the conditions are horrible. Despite all my own emotional stuff going on right now, I am always drawn to going to the Reece's Rainbow site and checking in on beautiful Lera. Now my heart aches because time is running out for her. At a different time, under a different circumstance, in a different country - this could be Quinn. This is just too important. I pray that someone will see this post or another post somewhere and will commit to adopting her. She deserves a better life than being in a mental institution. Please visit Reece's Rainbow HERE. Also please visit the Christmas Angel Tree project.
Here is the description of Lera on the website:
Lera (4)
Girl, Born August 7, 2005
Russia SIGNIFICANT RISK, PLEASE ADOPT ME SOON!
Lera is a gorgeous little girl with blonde hair and blue eyes. She is 4 years old. She is quite high functioning, and doing very well. She has flat feet and a systolic heart murmur, but no major heart conditions. She is able to walk and climb, she eats by herself, dances, and understands and follows directions. She has also been transferred to the regular class, so she living and learning with her typical peers.
She will be transferred soon to a place she can not be adopted out of, so please save Lera!
This is an old photo, but it pretty much summarizes the mood today...
Quinn is in a foul mood today. The reason - you guessed it, is ACTH. Man, that drug has turned my beautiful princess into one angry girl. Yelling....yelling....more yelling. I really need aspirin. She also has no motivation to do anything except be held or yell. It is all very draining. We are supposed to go out for an early celebration of my birthday, but I am not sure I want to do that with the yelling queen. Two weeks down and six to go (hopefully).
The worst part is that she won't play like she used to. That is very hard to witness. I know now that any further gains in development will not be coming any time soon with this drug pumping through her system. Hopefully we can back on track after this is over, hopefully the seizures will be gone, and hopefully we will be left with only the DS. Funny how your perspective changes when something else gets added to the pot. DS-only is seen as a cake walk to me now.
This morning Quinn work up hysterical, but soon calmed down. I got to hold her for a really long time with her just so calm and pressing her hand against my neck. Even with all the drama and the difficulties, she is the best daughter I could have ever asked for. I love her.
Last night I came home from work to find out that I had a situation to follow upon. Aidan and Riley were looking at photos on the computer from a recent event at school. A photo came up of a little girl who happens to have a disability. Aidan said to Riley that this girl was a dork and weirdo. Deep breath. How can this be? How can one of my own children say such a thing when his little sister is sitting right there who also happens to have a disability. On the good side, Riley was outraged about this. So I had a heart-to-heart with Aidan last night about this issue - we do not make fun of those who are different, namely those who are differently-abled. We celebrate them.
Would I have had this conversation if Quinn was not in our lives?
Probably, but I would not have the passion in my heart, the pain in my eyes, and the powerful significance behind my words. I owe all that to Quinn.
Although Aidan doesn't tend to be too serious most of the time, he totally got it. I could see in his eyes he was sorry. The power of all that comes from Quinn, my little girl who is so not loving life right now and who appears to be suffering from these shots. The shots that I both love and hate - love because I hope it will bring relief, but hate because I can see that it is making her very uncomfortable. These are the same feelings I have had about that extra 21st chromosome - a love-hate relationship.
Some people will never know (or just do not want to understand) what I experience and they will never truly get what you sometimes have to do for your child. God bless the ones who do know or at least try to understand.
With all the hoopla about Quinn lately - I haven't commented on the boys. They are staying active and wrestling with each other. They are being their wild selves. Right now I have a boy (named Aidan) throwing toys down the stairs as I type this - such a great past time! I often wonder how this is for them having a sister with a disability. It definately changes their lives - hopefully for the better in so many ways. Currently it is changing their lives in terms of headaches from Quinn's periodic screaming - she is not loving the shots. I want to find a ticker to count down the days. Thankfully it will come before Christmas.
Anyway, back to the boys - what I love best about them is their distinct personalities. Riley is usually Mr. Responsible. I say usually because he is going through a thing lately with turning nine soon. Overall though he wants to know about the way of the world and loves learning. Aidan is Mr. Goofy Guy. His big thing currently is wetting down his hair and then coming out of the bathroom like he is Rico Suave. That guy is going to be something when he gets older. He is all about the ladies. Two boys who look so much alike who are so different. I love seeing them together with each other and really hope someday Quinn is in the mix with them. That would be a dream come true.
Here we are the last day of the 31 for 21 challenge. The last day of Down Syndrome Awareness Month. I made it through despite what may have seen as insurmountable odds and personal challenges that I faced during this month - I did my 31 posts! Doesn't that speak to DS, the challenges that can be faced, but the idea that you will get there with your own pace (as the Creed above states).
Awareness is important. I am thankful that we have this month to build awareness for my daughter and for so many others. Awareness can help us move forward versus backward. Our backward had to do with things like institutions, eugenics, and dehumanization. We have a lot farther to go because the current treatment of individuals with disabilities in our society isn't suitable either, but at least it has improved.
Just this week I heard two students talking about the new hate crime bill that was passed. They were talking about how President Obama signed this bill that protects individuals based on gender, gender identity, and sexual orientation. They said it was about time. I agreed. I have to admit that lately I haven't watched the news, so I was just hearing about it for the first time through them. I came home and looked on the internet and saw that disability was also included. On one hand, I jumped for joy - that is great - finally disability is included!! On the other hand, I felt sad, for the students left off disability from their excitement and doesn't that just further indicate where we are with things. So we continue to need awareness. It doesn't stop at the end of October or with this last post - it should go on throughout the year.
Awareness will always have a "strange" connection for me. Quinn was born during DS Awareness Month, and ironically she was diagnosed with Infantile Spasms during Infantile Spasms Awareness Week - what is the chance of that? Does it mean I am on the right path with this awareness stuff? I think so.
The thing is despite our slow move forward in the USA in awareness, we have to be cognizant that it isn't this way in every other country of the world. That is also awareness. If Quinn was born in another country she may not live the life that she would here in the USA. Depending upon the country, she may be institutionalized (that is the norm), would be denied medical care (with her IS that would be huge), and would not feel the love from a family that she does now. Please watch the video below about Reece's Rainbow. This is a beautiful organization that helps kids with DS in other countries find their forever families and a home of their own. They have a campaign to raise money for these little ones this holiday season - you can even click on the ornament on the side of my blog to connect there. This is also about awareness because we are all family, and Quinn's brothers and sisters in other countries also need our help.
So all of this is why awareness is so important to me personally, to my little girl, and hopefully to you. Please keep passing on the idea awareness all year around. Thank you!
Even though I desperately wanted to get to the hospital to get things going earlier in the week, there was always that feeling that I wanted to be at this point - coming home. Yesterday Quinn was able to come home. If she really knew and understood about Dorothy in the Wizard of Oz, she might have clicked her sure steps together and said, "There is no place like home." It is hard to explain why I know this, but as I walked her through the door, I could just tell she was relieved to be home. Poor girl who has been through so much is finally in the place of love and acceptance for her - in her home with her hair clippies and bows, clothes, toys, photos, and love surrounding every cute inch of her.
Last night my neck and shoulders were as hard a rock from the accumulation of the stress, anger, and transitions of the week. I was able to go to bed and feel that tension lift. Today feels so much better. I actually get to have a day to spend with my family - so so awesome!!!! There is truly no place like home, especially a home with all your family there together.
I have said it before and I know I will say it again, but I have learned so much because of Quinn. I really do feel that this girl came into my life to shake me up, push me off of my equilibrium, and teach me about worlds I never knew about - Down syndrome and now Infantile Spasms. She has taught me that there is so much that people just take for granted. She has taught me the real feeling of having unconditional love for your child. She has taught me that difficult times can make you a better person. I love you Quinny and I am so happy that you are home. There is no place like our home with you in it.
These clips are of two beautiful teenagers with DS - one becoming a homecoming queen and the other a king. Happy tears!
I love to watch Top Chef - I love the thought of fine dining, although that usually isn't on our agenda with our lifestyles. But we do have something pricey in our fridge this morning! Are you thinking that it may be some fancy, delicious food product? Something so tasty that you would love to eat. What could it be? Is it food? Nope, it is four vials of ACTH. We received our delivery yesterday. At around $30,000 a pop, these vials are very very pricey. And we have four of them. There is tons o' money sitting in our fridge in the form of that medication. A medication that might not work. All that money sitting next to Riley's half drank juice pouch and Aidan's favorite condiment, ketchup. I looked at the vials sitting in our fridge this morning and couldn't help but to think we need to really clean out our fridge because that stuff is way too expensive to be sitting in that filth.
Doesn't this whole situation just make you feel like something is awry in our society that this could happen? If it wasn't for my hottsie tottsie insurance, Quinn wouldn't even get to try this treatment. A treatment that may or may not work. I really hope this works, but quite honestly I find it hard to be optimistic when at every turn we have had some crap come up out of nowhere.
What is with our society? This medication is so expensive. To receive SSI after age 18, Quinn has to have hardly any money in her name. She will need SSI or something at some point because she won't always have access to my hottsie tottsie insurance. So if you have DS, you need to be next to broke, but somehow manage to have access to very pricey treatments (that sometimes may not work). My head hurts. I think it really says something about the character of a people in how they treat those who have disabilities - and sure we here in the US have come a long way, but we have a long way to go. We don't put individuals with disabilities in institutions like we used to, but instead there is a large rate of termination for prenatal diagnosis and very expensive treatments when they are allowed very little money in their name.
On a nice, brighter side, please watch this clip of a girl named Kami - she is an inspiration:
Parenting is not the type of job for wimps. In the course of the last few days I have had so many range of emotions and had to poke my daughter twice with a needle to prove that I can do it. I have had to advocate like no other - or probably be a witch with a b for the w. Who said parenting was easy - it is the hardest job ever. But Quinn is worth it. Hopefully all of this works for her and she is able to come home soon (she is miserable in the hospital - man, does that girl hate it).
I am happy to finally report something...after getting the runaround in the am (the insurance company said that the hospital didn't give them the correct code for the tx and the hospital blamed the insurance company), we finally were approved and got here and Quinn received her first shot of ACTH. She did pretty well with the whole experience. Hopefully we will get the meds sent to our house without a hitch so we can go home on Thursday.
"Hey Karyn, do you want to play a game that will be REALLY FUN (for us) and TERRIBLY PAINFUL (for you)? Oh come one, play. What do you say Karyn, you don't want to do this - yeah right, who would? But who cares that you don't really want to play, we are going to make you anyway - just because we can and because we want to. Get this, the game we are going to play is called psychological limbo. We just want to see how low you can go."
The above is what I am going through right now. Our family a pawn in someone else's game. I am really trying to leave the expletives out of this posting - but if you are not opposed to them - you can insert a long list of them right HERE.
Here is my experience - you are going along in your life, minding your own business, no huge problems - then the limbo bar is dropped - you find out that your daughter has Down syndrome. That isn't a biggie. In fact, that helped me. Ha ha - see you didn't get me - I still kept my courage and found meaning in this. You feel triumphant - except it doesn't end there. The bar is now dropped again - "Karyn, your husband got laid off of his job." Ok I can manage that. I will just pick up extra work now and he will stay at-home with Quinn. She will be more healthy that way, get more attention, we can manage that. See we are still triumphant! Woo hoo! Now the big one - the limbo bar drops - "You know these head drops you see, those are infantile spasms and we need to do treatment as soon as possible so they don't increase and she doesn't regress" - wow this is scary. This is a major play in the psychological limbo game; I am not sure I can go that low - but for my daughter, I will. Why did that have to happen, but for Quinn I will get through. Now on to the next round - we are in the hospital last week - another drop of the bar - "Sorry, she has a cold now and we can't do the injection we planned for an hour from now." And now the worst drop of the bar of them all (mainly because of the accumulation effect) - expecting to get this treatment started yesterday and it was not.
My random thoughts on this subject, as I am having such trouble focusing given my anger, sadness, you name it -
#1 We are home. Not in the hospital. Never in my life would I have thought I would be so upset by those two short sentences, but today I am. I have rearranged my schedule like any good parent would for their child to get treatment as soon as possible. That is not an easy task given all I have going on, but I did it because I FOLLOW THROUGH, AM RESPONSIBLE, AM COMPETENT, AND CARE. Unfortunately I can't say that others do that in their respective jobs. What is the hold up, you ask? Well the insurance has pre-approved the hospital stay, but not the ACTH treatment. Why would we need to go to the hospital if it wasn't for the ACTH? Sorry, but we aren't people who just like to hang out in hospitals for vacations. That is the most stupid thing I have ever heard.
#2 I have good insurance. I don't have crappy insurance - so why the heck is this happening? In fact, I am a state employee so I have the benefits that the conservative radio talk show hosts in our area go on and on about. I have heard them on the radio talking about how it is not fair that state employees have these type of benefits because the people in the private sector do not get them. IF MY BENEFITS ARE SO HOTTSIE TOTTSIE (see so far I am doing great not swearing) - then why the heck is this not approved already???!!!!
#3 Last week they went up to an hour before her injection to decide that they weren't going to do it because of Quinn's cough. Gee there wasn't pre-approval then, and they were going to do it. Why now all this hub bub (again avoiding swearing) about pre-approval? I asked that - the response I get - "Oh that is a good question, I don't have an answer." What? You expect me to be a sheep don't you and not ask a single question - you expect me to just go along with what you say and nod my head. Well you aren't going to get that here.
#4 I find out that the paperwork was faxed over for the pre-approval on Friday. Why Friday? You sent us home on Wednesday - remember I was the one with tears in my eyes who you assured that everything would be ok and set up for Monday? Recap - you told me on WEDNESDAY that it will be ALL SET UP for MONDAY (gee that day already passed because now it is Tuesday). Why wasn't this paperwork faxed on Wednesday? You know what, let's back up, why wasn't it faxed on MONDAY, OCTOBER 19 when you knew that this was the treatment we were going to do and planned to do up to an hour before it was planned to start.
#5 After the delay with ACTH last week, I asked the neurologist about the other option, Vigabitrin. He said that no, he still would rather go with the ACTH because it has better outcome with DS, and besides it would take three to five days to get in the Vigabitrin and we have to get this going as soon as possible. OK is it just me noticing that there is now a stupid delay that takes us out even longer than the three to five days? What about the immediacy of treatment? Was I the only one paying attention when that was said? I prefer to try the ACTH first, but I want my daughter to get some treatment. I think she is noticing the head drops now. She looked at me all concerned after having one last night.
#6 This was supposed to be a good month. This is the month celebrating Quinn's birth. This is the month of Down Syndrome Awareness. I was supposed to have beautiful posts and now it turned into these angry ranting posts. I am so sorry. I wouldn't want to read this blog if it was not happening to me. I would find it so depressing. I would want to hear nice, happy things - not this crap. But I have been thrown into this crappy game that I didn't want to play. I don't want to be right in this position in psychological limbo that I am right now. I don't want to be so low. I just want my beautiful baby girl to get what she needs. I want others to care something about this situation and rectify it. But writing these crazy, ranting postings is the only thing that is keeping me together right now. Maybe someday I can go back to the posts I wanted to do - the ones that are more positive - and maybe you will read them if I don't scare you off with this crap first.
So this morning on the agenda is more angry phone calls - to the insurance company, to the nurse practitioner (who didn't fax the paperwork to the insurance company until Friday and quite personally is not my friend right now because I put a lot of blame on her), to the neurologist to alert him of what his people have done to mess up this situation, and to the pediatrician just hoping she could maybe contact someone and get something to happen.
Because this post is just so negative, here is a clip about Dreams for individuals with Down syndrome. I watch this video with tears in my eyes hoping that Quinn can someday be seizure-free and have these dreams - that is all I want. See the video HERE. See I made it through without one swear word - a big accomplishment for me right now.
We are to go back to the hospital today. Quinn still has a little cold, so I am not sure what is going to happen. She is significantly better than last week though. I am just tired. This is all very draining. What if this one gets called off and then we have to go back for a third try? I don't even want to think about that possibility, but it keeps coming into my head. I guess if we move ahead with this, Quinn will get her shot at 8pm tonight. Please pray for her.
Yesterday I took some time to myself to go scrapbooking. It was something I needed - to just focus on Quinny's photos and take some time off. Two things happened though - there was this speaker during the scrapbooking event on the Make-A-Wish Foundation (they have product from Make-A-Wish for donations that the scrapbooking place is trying to sell). I heard a mother's story of her child having cancer - she spoke of the fear, the hospital, how their life was disrupted. Although I am not experiencing that exactly, I think I was the closest person in the room to knowing how this may go. I kept thinking about that and fighting back tears. And then later I heard two tables down laughing and laughing. Someone asked them what they were laughing at - and they said oh some special education student they know. Great. Then one lady is working on something and not getting it and said, oh I am like the special ed student and laughs. Double great. I believe these people are teachers. Triple great. Why does this crap have to happen? Here I am looking at photos of my beautiful little girl and these people have to say crap like that. Will that ever end? Probably not. At least I recognize the insensitivity of that now. Probably before Quinn I would have been annoyed by comments like that, but would not really know how that can truly hurt.
I just hope today goes well. I found this video this morning. I have to tell myself to find the meaning in this experience - that is pretty much the message of this video too.
There is this song that I have heard many times when in the car with the boys. They love to listen to the kids stations on the satellite radio. And this song is on there quite regularly Here it is (it is just a goofy song)...
There is one part to the song that I tend to think about in certain situations. It is the title of this post, "Freeze, wait for it." It signifies to me those moments when you KNOW something is coming. Like today, knowing that tomorrow we are to go into the hospital. Or something that happened twice this week - having a conversation about Quinn's situation and then...freeze, wait for it...the fear look, the comment, the whatever it is that shows that I just scared the person half to death by the reality of my situation.
I am quite surprised with who this happens with - people just like me - my age, working in the same or a similar career as I do, just like me. Maybe they feel the most vulnerable because if it is happening to me, it could happen or could have happened to them. One person this week had the terrified look on their face. The "Oh my God, can that also happen to me?" look. I should note that the person did ask about the situation. I told them and then... freeze, wait for it...the look and then... freeze, wait for it...the comment "Well I will tell you about my experience with the mentally retarded." Oh that is a nice touch. An attempt to distance yourself from them, they are those "mentally retarded" people after all - not my daughter, my sons' sister, a person you love and your heart is breaking for because she has to go through this medical crap that comes from something other than DS.
The second conversation was going well, in fact very well, I almost didn't have my freeze, wait for it moment, but still you better....freeze, wait for it... because you never know. It can come out of nowhere and slap you in the face when you never realized it would come. That is the problem with this, you can become defensive. Then it came...the eventual comment/advice came that "Quinn, unlike normal kids, should receive".... Wow - Quinn isn't normal - that would make her abnormal, then in response I am abnormal because she came from my body. And then that would make my whole entire family abnormal. We are just an abnormal brood of people. I would rather think of us as your typical family who is going through a struggle - we all have struggles, challenges, moments when we are tested. To me, that is normal, not abnormal. The people who never have these things may be considered abnormal.
It doesn't happen 100% of the time. And I know people just don't know what to say. They are well meaning and just don't know. I don't hate them. I can put these comments behind me and still recognize they care, but I hate that these comments effect me - that I have developed this freeze, wait for it method.
I also want to mention that there are also great moments where people just look at you, listen to you, tell you they care, tell you they are there for you, offer to help you in certain ways, are just with you - but it is these freeze, wait for it moments that get you - they seem to get you the most when you are down. Ironically it is called Down syndrome, after Dr. Langdon Down. I suppose people who don't know about where the name comes from may associate the syndrome as ripping your life apart and making you down and depressed. But in actuality it is not the DS that does that, it is more of society's view of disabilities that does that. It is the freeze wait for it moments that does that. Down syndrome actually has been one of the better parts of my life.
Here is a video I found this morning with some cute kids and adults with DS. Enjoy.
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.”
