Friday, December 31, 2010

Depraved Indifference

I have been away from the blog for a while. Too long. I had a hard semester in a lot of ways - teaching too many classes, taking on a lot (too much), and worried about the status of my full time job. I became just so burned out. But now I am feeling a renewal. Well sort of. I started working on some advocacy again about my full time job and issues there. I am starting to get my spirit back. I keep going back to that if the kids there were my kids, I would want someone to stand up and speak out to allow them to continue to receive the services they have been.

This clip, although it has been around a while, really speaks to me. The statement of "I suffer from depraved indifference" really fits me given that I have done little for social justice the last few months. When we hear about things, we tend to not let things affect us. That has been going on with me and I feel shame about it. I look around at my work and see so many people leaving and moving on because they don't know what will happen. I can't do that. I need to speak out. So it is time to get going on some things again. "Heroes are made because they are moved - not in their head, but in their heart." I am thankful for all the heroes that were moved when it came to disability rights. My beautiful daughter will benefit from their caring about her and others like her. I have to be moved about things too. May 2011 be a year that more of us become moved.


Friday, November 12, 2010

Just the Way You Are

I love you Quinn, just the way you are!


Saturday, October 30, 2010

IEPs Should Not Be Like Buying a Car

Quinn has started early childhood classes. And she LOVES it!!!

The whole process setting this up sucked. We are happy that we finally got what we did; she is going to four half-days per week and then we are supplementing with private therapies, including music therapy - my girl will be a rock star - ha ha. BUT that being said, the whole process was well...I'd better not say. Let's just say I would insert a bad word greater then sucked back there. As many of you who visit here know, things have been complicated in the last year with additional diagnoses which have greatly impacted Quinn's development. This was minimized and the OFFER from the school district was two half-days a week of school. It was said that they don't do more. When we didn't immediately agree, then they still only offered three half-days a week. What is this back and forth crap, am I shopping for a new car? Then we walked out the room without signing the IEP. After I informed them that I would be getting an advocate to just make sure because her placement should be based on her individual needs and not what they tend to do in our school district, their tune completely changed. We could get whatever we wanted. Crazy, huh? I didn't even get the advocate, I just said I was going to. Kind of makes a person believe they weren't doing what they were supposed to. Anyway, we settled on four days a week versus five because then Quinn could go to just one school for all four days (if it was five, she would have to go to one school for three days and another for two).


Sunday, October 24, 2010

Happiness and Sadness

My baby girl turned three on Wednesday. Her development has been just taking off. Two weeks ago she started saying Mama, dog and all done (all done is a little joke she says a lot, when she isn't all done she says it and then smiles when we tell her she isn't all done). She has been coming up to her brothers so much more that her brother Aidan now complains that she is getting into his toys too much - ha ha. She makes more eye contact and will thread her fingers through yours. I feel like things are better and she is just so beautiful (see her three year old photos) and then on Thursday we received the results of the neuropsychological eval that claims she has autism. I say claims because the two times I witnessed Quinn crawl right up to the neuropsychologist are not mentioned in the eval. Down syndrome is referred to as Down's Syndrome throughout the eval. And I was the one who had to tell them about George Capone, who we are now going to try to see when my life calms down enough for me to pursue that. All the neuropsychologist did after I told her about George Capone is look his photo up on the web (she actually admitted that to me). Maybe I am just not accepting the inevitable, but I don't understand this. The neuropsychologist told us TWICE that she knew how we felt. The last time she said it I basically went off on her that, as a helping professional myself, I can tell her that statements like that do not help. Now I have to contact her again to tell her that I want an addendum to the report mentioning that Down's Syndrome should be Down syndrome and mentioning the crawling up to her, and correct another error in the report. There is always something... But I do have my beautiful girl and it is so great that she is more interactive. I can't believe she is becoming more interactive just now when we receive such a diagnosis. Maybe someday I will write Autistic Disorder on the side of this blog, but for right now, I cannot stomach it.


Monday, September 20, 2010

Evaluation Part 1

The evaluation of my daughter to find out whether she has a fourth diagnosis (i.e., Autistic Disorder) – Part 1: The parent interview:

1. It would have been nice to not have to worry for an extended period of time while waiting for the appointment to start. The apology for being late was nice, but we could tell you weren’t prepared for us.

2. It is recommended to actually read the file prior to starting an evaluation, especially if you proudly note that you have collected and received the information. Knowing that Quinn is actually a girl, not a boy, would have been a nice touch when it comes to the development of rapport and showing us you actually reviewed the file material.

3. Your reaction to my profession was priceless. Yes, I am a psychologist. We do sometimes have children with special needs after all. Sorry but I don’t think I will be following through with your request for my business card so you can refer to me, for I am not comfortable with that.

4. Knowing the expert on co-occurring disorders of Down syndrome and Autistic Disorder would have been a nice touch, especially given that if you find that my daughter has Autistic Disorder I am going to double-check with this expert. I liked how you tried to be very calm with my words on this subject.

5. Don’t tell me inaccurate information on what has been “found” related to psychological testing. I doubt if there is any research to suggest what you said to me. In our field I know we prefer to give tests individually to the child without the parent in the room, but a tendency towards increased performance under these circumstances is not often the reason.

6. NEVER EVER SAY TO A CLIENT THAT YOU KNOW HOW WE FEEL. If you do indeed have a child with special needs and maybe have a hint of how I might feel, perhaps you should have self-disclosed that. However, given 1-5 above I am thinking that you do not (although I will ask that at the feedback, along with nicely telling you all the above – one psychologist to another). I don’t think you have any idea what it is like to be on the other side of the evaluation. It is actually a blessing and the most education you could possibly receive in the area of psychological evaluation. But this hasn’t been an easy road, for I am an individual who has always performed at the top of her class and then my world changed, I found out that I am an overachiever who is the mother of a child with a disability (DS). I ultimately found out though that DS, and this first diagnosis, was a blessing. It made my world a better place. Then, unfortunately, entered diagnoses 2 (IS) and 3 (Stereotypic Movement Disorder) and the possibly of 4 (Autistic Disorder) and I find with these additional three diagnoses that I only wanted my daughter to have a diagnosis of Down syndrome. I repeatedly feel robbed of the “typical” Down syndrome experience, if there is even one. I don’t think you know how that exactly feels.

But for now, I wait for part 2 of the evaluation and our results and feedback. Then I will speak my mind.


Friday, August 27, 2010

Another One

Another insurance company said they would not insure Quinn and they know nothing more than that she has Down syndrome. Unbelievable. I just hope to God my job doesn't close or I am in deep trouble.



It is quite something to look into the face of discrimination and realize that it is pointed squarely at your daughter, your love, your one and only little girl who lights up your life.

We are investigating what it would involve to take on our own health insurance in case their are changes in the future.

What we found out thus far is pitiful and shameful. Our current carrier would insure us all - minus Quinn - at a huge price. But because of changes in the law, we are lucky that in a few weeks they will begrudgedly insure our daughter at an even higher rate. Oh that is reform. AND all this is even before they know the details about her previous bill for a medication for $120,000 for the treatment of infantile spasms, so can we anticipate that the price would increase even more. It isn't much better with the other companies we looked at - and you want to bet when they see the medical concerns she has had, the price will only go up.

And I personally don't understand this health care reform because I have been to busy dealing with possible closure of my main job, Down syndrome, seizures, stereotypic movement disorder, and now a looming evaluation for pervasive developmental disorder. Plus a million and one other things.

Neal posed this question, "Well what did these insurance companies think would happen to Quinn when she became an adult, didn't they think she should be insured?" I responded, "Don't you know the answer is no. They think she should have inadequate health care because they expect she will die at an early age." It is nice to know people have such optimism for your child - the sarcasm is dripping from my finger tips.



The other day Aidan was having a crying fit about something that is now inconsequential. The cutest thing then happened, Quinn looked over at him and did a frownie face. At first I thought it was empathy, she was feeling for her big brother and everything - but maybe it was because his crying was bothering her. :>)


Wednesday, August 25, 2010

Local People

HERE may be something of interest if you want to sign it. No pressure.


The Lifeguard

I studied psychopathology in graduate school. Now I teach the course and regularly look to my DSM-IV-TR as I complete psychological evaluations for my private practice. I will be completely honest with myself and say that one diagnosis that I never really thought much about pre-Quinn's own diagnosis with it was 307.3 Stereotypic Movement Disorder. Now I just can't look at certain things the same way. Every time I page through my DSM I stop for a moment and look at that page. That never happened before. And then there was yesterday when I saw a lifeguard at an indoor water park that we were staying at. I know that this lifeguard in all likelihood does not have a diagnosis of Stereotypic Movement Disorder, but I couldn't help but to think of this disorder as I watched her stretch her neck back and forth in the same way that Quinn does when she is doing these movements. No other lifeguard did it quite the way she did it and it looked just like Quinn stuck in her movements. Back and forth. Stretching the neck from side to side. Over and over again. Now the lifeguard was trying to look by the side of the pool and make sure no one was needing assistance, but my daughter does these things not for a job, not for any purpose really except to perhaps stimulate herself. Some days she does this a lot, other days not so much. But I will never look at certain things the same way. I now notice things that other people do not. I think Neal and I were the only two people in that huge waterpark that looked at that lifeguard that way, thinking of our daughter. Stereotypic Movement Disorder is just one thing that has changed my life.


Friday, August 13, 2010

Standing by the Window

When I drove up to our house last night after my typical 12 hour workday, I noticed something, or rather somebody standing by our window and looking out over the neighborhood. And this little person was not so little anymore. Miss Quinny was standing there watching the cars and people walk by and, more importantly, waiting for her mother to get the heck back home. If it wasn't for that pesky desire of wanting to avoid an accident, there would have been no way I would have turned away from watching her watching me and standing by the window. I parked the car and then like a stalker walked to the front of my house to watch her some more. I don't know why, but it just warmed my heart so much seeing her stand there watching over her universe.


Tuesday, August 10, 2010

Family Photos

Monday, August 2, 2010

Happy Birthday Aidie

My baby boy is turning six today. I remember his birth just like yesterday. It had all the drama consistent with Aidie - ha ha. I was watching him sleep this morning thinking where did my baby go? Here is a photo signifying just how grown up he has gotten (ha ha). Happy birthday my sweet.


Sunday, August 1, 2010

The Couch Potato

It may seem like a small thing to some, but WAY COOL is that Quinn climbs up on the couch or recliner and likes to sit back and relax. I don't know why, but that makes me feel WAY GOOD!

By the way, I would like to make a formal announcement to the world that she is NOT walking on her own yet and please REFRAIN from asking me this repeatedly. I don't know how many times I have to have the talk with people that it is best to ask a vague question like, "Is Quinn doing anything new?" versus specific skills like that and then looking shocked when you have to answer in the negative.


Saturday, July 3, 2010

Helmut Hair & Others

I have been neglecting my blog. My last post tells you why. Anyway, I wanted to share these photos of our vacation that we went on in June. Quinn and the boys are getting so big.


Friday, July 2, 2010


I don't tend to talk about my work, but here it goes...

I feel honored to be able to work within the field of juvenile corrections. I truly love my profession and the population I work with. If you would have told me when I was younger that this would be the population that I would be destined to work with, I would have never ever believed you. Now after doing this line of work for almost 13 years, I simply cannot imagine ever wanting to work with any other population or in any other institution. I am just one of many people who feel this way, and I work at Ethan Allen School. Ethan Allen School (EAS) is an institution that is in jeopardy of closing all because of politics. Facts like diversity of staff, close proximity to the homes of youth, the value of face-to-face visits, and access to mental health services have all been discounted by the Administrator of the Division of Juvenile Corrections and the Juvenile Corrections Review Committee. I hope that the Governor doesn’t discount these same things, but I am unsure about this given that he appointed these individuals to their positions. I just cannot believe that we have come to the place of actually talking about closing EAS and moving all the youth to an institution a much farther distance away from their homes and the communities where the vast majority of the youth come from.

This morning I walked to one of the cottages on my way to see one of my kids. I do consider the youth placed at EAS my kids. Not the same as my children at home, but the youth at EAS are in my care during their time with us, and I take this all very seriously. They all made bad choices in order to come to EAS, but they are still boys and young men who are very capable of changing. I have spent the last 13 years studying what it takes to change, talking to the youth at EAS about this concept, hearing about their lives, and helping them through unbelievable difficulties. I have experienced tears, loss, anger, guilt, pain, happiness, and laughter. I walk to the cottage thinking about how much I actually love this place. I know it is hard to imagine loving a correctional institution, but this institution is filled full of almost 13 years of memories, people that I loved working with – both youth and staff. I walk by Draper Hall and remember so many kids I worked with over the years, there are so many that I remember what their face looks like or the sound of their voice yelling hello to me through their window. I love working with every one of them. Some are thankfully successful adults in the community. Some were lost to the streets and maybe prison. Some had a slip up as an adult and then turned themselves around. And some are now deceased, but I loved working with every single one – even the challenging ones. It was an honor, not only did I teach them, but they taught me. They made me a better person. I give it my all with every single kid to help them consider change in their lives, but I recognize that they ultimately have the power to decide their destiny. That is the way it should be.

I arrive at the cottage to talk to my youth. Every time I talk to one of my youth I just know that I am in the right line of work. I feel this is the place I am meant to be. There is nothing like seeing the look in their eyes and the turn of their heads when I ask a question that challenges them. I can see it clearly over and over – this is the population that I am meant to serve. They also know they can rely on me when they are at EAS. I will always have their best interests in mind even if they don’t agree with my response. I have a gift in creating a strong therapeutic relationship with these youth. They see I care, but they also know that I will challenge them to think about things they never considered before. I recognize that I use more challenge with the youth I work with now than ever before, and they surprisingly take it well – they want to know what I think. I do not lie to them. They know that I will do what I say I will do. They know that they are safe.

Later in the day I am honored to see the family of one of my kids. So many people make assumptions about the families of the kids I work with. I can’t read postings online anymore without anger at some of these assumptions. Not all families of kids placed in corrections are one way. There are a multitude of stories. There are, however, times when unfortunately some of these assumptions are true, but this is not always the case. People from the outside who don’t know these kids often don’t have any idea of what really exists. They see these kids as “monsters” and criminals and their families as permissive or absent. Why not place them far away, they say. They really have no empathy for this population. But I know otherwise. The family of my kid is stable, loving, sets limits and boundaries, and is highly involved in their child’s life at EAS. I witness a powerful interaction. I see tears. I see hugs. The kid hears about how his previous behavior in the community impacted his family. I ask him to turn and look at his family and see their reaction to him coming home and to forever remember this moment. I see it in his eyes that he is taking in what I am saying to him. Looking back now as I type this, I see very clearly that all of this would not have been possible if EAS was closed. His family would probably have not come to the review which would have been a substantial distance away. If they were present via teleconferencing (an option discussed by the administrator and the committee) this interaction would not have been as powerful. I have studied people who change and recognize that defining moments like these can have a lasting impact. This kid, who has great potential, may be lost to the system or the streets without this moment. I am so thankful that we had this moment because there may be countless people impacted if we did not.

I remember the families over the years that I have worked with, one after another. I remember the honor of helping them through difficult moments and losses, seeing them become closer, witnessing vulnerable moments, and looking at the kids’ faces when they see their family walk up to our building for a meeting. I remember the pride of kids I worked with being able to introduce me to their families at visits or graduation. I remember the young men with children who wanted me to hold their son or daughter. I remember the joy of surprise visits on their birthday or some other occasion. How happy the youth were that there family was able to make it out to EAS last minute for this occasion.

I think about all the Serious Juvenile Offenders (SJOs) that I have worked with, one after another. They have a special place in my heart because this is the population that I have worked with the most over the years. There offenses tend to be the most serious and many would discount their ability to change, but I know they have potential if they choose to do something different with their lives. I simply know if institutions such of ours did not exist in the State of Wisconsin, one after another SJO would be waived into adult court. The advocates trying to get rid of all juvenile correctional institutions and move to the Missouri Model do not have any idea what they will be doing to this population. I think of so many SJOs who have had such potential – that this might have been their first offense, but it is serious enough that they have to come to corrections. I feel sad knowing that they may be lost to the adult system where they have less likelihood of receiving treatment and more likelihood of being drawn into additional negative activity and experiencing violence and assault.

I cannot believe that people are actually discussing closing EAS. I tried to have my voice heard in this process, but I feel that those who are “driving” this moment don’t want to hear from people like me. They discount the years and years of knowledge that I and others have on this subject. They want to portray our institution as a place where the staff just can’t get along and where the kids are unsafe. They are discounting any evidence that is to the contrary. They don’t want to see any good at EAS. They don’t want to see that there is support amongst staff. Maybe it isn’t 100%, but you tell me what work environment has 100% of the people getting along. If another correctional institution seems like 100% of the people get along, I would be very suspicious of this portrayal. My daughter’s two Godmothers have worked at Ethan Allen School, so this alone tells you what support there is amongst the staff. I admire so many of the staff. I know a youth counselor who the kids just respect, a man who can reach the kids who have an absent father like no other person can. They see hope for their future in him, as he comes from the same city as many of them do. He always treats everyone in the institution so fair and kind. I know a teacher that the kids just adore. One after another tells me know they would not have been able to get their HSED without him. He is a team player, and he always helps me out whenever I have a need or a question. I know a social worker who advocates for her kids’ needs. The kids respect what she has to say even if it isn’t exactly what they wanted to hear. She regularly reaches out to staff in need. She has even comforted me in my most difficult personal moments. I know a nurse who consistently follows through and communicates about the needs of the kids. He always has a smile on his face when I see him. I know a superintendent who cares about our opinion. No matter who you are, youth or staff, he treats you with respect. I walk around the institution thinking how is it possible that they portrayed us like this? What is the true agenda here? The above is just a sampling of the staff – there are so many others who I have been honored to work with. I could go on and on.

Ultimately, what I worry about are the kids, my kids. Since this horrible series of highly political events have commenced, I have advocated for them. I will continue to advocate for them. This is why I am telling my story even if it doesn’t change things. I just feel my voice needs to be heard. I am not speaking out for me. I am speaking out for them. I cannot see any justification to moving the vast majority of the kids, my kids, far from home to a county that demographically is so different than their own. This just isn’t right. I just hope that those in power to make these decisions will not close EAS for the kids who have been entrusted in my care. If you are from my state, please call the Governor and speak out about this (608) 266-1212.


Tuesday, June 15, 2010

Reality Bites

One thing after another, so it seems.

I am trying to enjoy a vacation at the moment when my job (AKA my passion and life's work) is in the balance and depending on all things, politicians. Risky to say the least.

Kind of reminds me of a vacation three years ago when Quinn was in my belly, a diagnosis of DS was on my mind, and my husband's loss of his job was in my heart.

But we adjusted.

Then a new diagnosis of a seizure disorder came along.

Then we adjusted and completed a $120,000 treatment.

Then yet another new diagnosis came along (Stereotypic Movement Disorder).

But we adjusted yet again.

And now waitng for this decision and questions about what will happen....

I had the dream of going into private practice if my work closes. That way I could work with a smilar population, but then reality came here back to me....


Quinn's medical needs...

Oh things are complicated, aren't they?

But as always, we will adjust. I am just feeling trapped between a rock and a hard place at the moment.


Sunday, June 6, 2010

Wisconsin Natives-Please Help

If you are from Wisconsin, please help get the word out - Out of 437 youth in the Department of Juvenile Corrections, 325 are from the southern counties. That is a huge percentage of youth, families, and county workers to be inconvenienced by moving the location. Please write your governor, state senator, and state representative.

Sunday, May 30, 2010

The Girl I Love

First, can I just say that isn't this girl the cutest?

I could look at her all day.

Here we are with things - at least the diagnoses:
1. Down syndrome - no biggie.
2. Infantile Spasms - sucky. But the good news is that there hasn't been any more seizures and her med is supposed to help prevent them now.
3. Stereotypic Movement Disorder - the jury is out on how I feel about this one, but it is very stressful to see these when you fear seizures all the time.
4. Now the neuro wants an eval by a neuropsychologist. Why you ask? Well I don't know - I wasn't at the appointment and did not have the opportunity to ask, but I have my suspicions of what he may be thinking is there PDD (Pervasive Developmental Disorder). I am basing this on the questions he asked Neal. I just don't know about whether that is something with her though. The last few days she has been so interactive. The more I watch her, the less I am convinced.

But today all of the above doesn't matter because just consider how cute cute cute my girl is. She is the best daughter a mom could have and I am blessed. Oh the power of mighty Quinn.


Friday, May 21, 2010

Not Part of the Cool Kids Club

I was in a meeting yesterday. I am realizing that these meetings are tense for me because usually something like this happens... The topic of the meeting turned to our kids and that our kids "need" to grow up and go out on their own versus us perpetually taking care of them (one person has kids who are young adults and pretty dependant on their parents). Discussion insinuated that this is the way of life and the only way things go. I was just struck with how many assumptions are out there - thinking that this will happen for 100% of the people in the room. I don't know what the future holds. Hopefully Quinn can be independent. But maybe not. Let's be realistic, Quinn is even behind her peers with Down syndrome. She has epilepsy which is impacting her development. How can I assume anything? I need to wait and see. But at the meeting I realize that I don't fit in with the supposed "cool kids." The cool kids who think they have it all figured out. I am an outsider who has a different experience. An experience that they really don't want to hear because it scares them. It challenges their assumptions and that is just not a place they want to go. Disability is diversity and when you really start looking around you see that you can feel different in a lot of places - assumptions are everywhere. However, in this case I actually would rather not be part of the cool kids club. If I was, I would have never have gained this new perspective and I would be blind to a whole segment of life.


Tuesday, May 18, 2010

Catch Amnesia

Last night I was listening to my Black Eyed Peas CD. I know they have some songs with the r-word in it (arrgghh), but what I was enjoying last night was One Tribe. I love that song. It makes me smile and boy did I need to smile. My favorite line in there is about catching amnesia and forgetting about the evil. I decided that is what I need to do when it comes to the current state of things in seizure land. I need to catch amnesia and see this...

And not the evil of seizures.

My daughter is the most beautiful little girl in the world. She is so worth whatever we have to go through to have her. And her face when she smiles is the thing that mends my heart.


Sunday, May 16, 2010

Another Final Exam

I am so tired. Emotionally tired. In a short amount of time, it will be the anniversary of the day that I received the prenatal diagnosis of Down syndrome. If I had known then what I know now, I wouldn't have had that hard of a time with that diagnosis. Here I wasted all those tears on what - something I long for now. Something I just want to have, the Down syndrome experience without any other major issues. I thought it was the end of the world, but it so wasn't. For those of you who have a prenatal or recent diagnosis of Down syndrome, please don't read our story and have fear. Down syndrome didn't do this to us. Down syndrome was the blessing. It opened up our world to a new sensitivity and understanding of others. Sure, it isn't always reciprocal - others don't always have that sensitivity or understanding - but then at least you find out about the character of others. Down syndrome is not what I hate now. Down syndrome is beautiful to me now. And so many people have just the Down syndrome experience. I guess it just wasn't in our cards.

What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.


Saturday, May 15, 2010


Want to feel helpless? Who would? Well, guess what, I do.

The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.

This happened to me last night.

Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.

Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.

Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.

I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.


Friday, May 14, 2010

She Had One While I was Holding Her

Sorry, I feel like venting this morning. AS USUAL, I have to go to work even though my world is shaken up and I am wondering what is going on. Why should this time be any different - I had to do that when we received the diagnosis of DS and when we received the diagnosis of IS. Now we are probably going to find out she is having another type of seizure. I am almost certain. I feel it in my heart. I also doubt we will get answers today, but will instead be tormented with this for a week at least. Then the "fun" part comes in and you get to watch these episodes and know that they aren't right and that right now there is absolutely nothing you can do about them. It is so painful and you feel so ineffective as a parent.

Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.

Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.

I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.

Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.


Thursday, May 13, 2010

If You Know About Seizures, PLEASE Read

If you know about seizures, please read this in case you can answer my question...please leave a comment if you have any insight into this. I am in desperate need of information...

Quinn was dx with Infantile Spasms (IS) last year and had tx with ACTH (finished up around Christmas). Things were going well. In the last few days she has started to do something strange. It started just once a day (we noticed it on Mother's Day) and then today she did it three times in a 15 minute period. She turns her head and her eye turns and she seems dazed and stuck there for a bit. Then she is back to normal. She will be going to the doctor tomorrow, but does anyone know anything about this? Can this be another seizure disorder related to IS?

I just don't know what I will do if it is something serious again.



Sunday, May 9, 2010


I have been neglecting my blog. This semester has been hectic to say the least, but hopefully I will have more time in the Summer to post. I can really feel that I am not writing because I am feeling more stressed. Writing does help with my self care, so I better suck it up and find the time. Plus why have a blog if it is just gathering cyber dust.

As you know, today is Mother's Day. So I woke up this morning having thoughts about what it means to be a mother. I really don't know what I expected in becoming a mother going back to the time before I had that itty bitty dimple faced little baby boy named Riley. Ten years ago I was pregnant with him and didn't really realize how my life would change. I didn't occur to me to even consider what becoming a mother philosophically meant to me. Unfortunately as with most things in my life, I just kind of did it because it was the next thing to do. I had two other moments to think about what becoming a mother meant to me, but I neglected doing that as well when I was pregnant with strong feisty Aidan and my mini-me Quinny. I really didn't get the significance of all these moments and the journey I was embarking on. I kind of wish I could go back and look at this more, really think about what motherhood means to me before the moment of entering it.

Quinn has made me more philosophical. Especially the last year has made me philosophical. Sometimes you are given something unexpected and it alters how you look at the world. So maybe I needed to have Quinn, experience the unsettling feelings of an additional diagnosis of Infantile Spasms, and then I would get the idea to really look at what motherhood means to me. Maybe things come in the order that is best for us and at a time we are truly ready to look at them.

Well these are the things I know...I am not a "traditional" mother (if there is such a thing). But I will do whatever it takes to give my kids what they need. I will fight for treatment. I will sacrifice myself (working long hours when needed) to get them what they need. I cherish my moments with my kids. I have talks with the boys about what it means to be a responsible, loving person and the importance of understanding and embracing diversity. I have started taking care of myself more (yep I know I still work a lot, but I am losing weight) so I can be around longer for my kids. But I am not perfect. I am learning. I am always learning and most of the time I am learning from my kids, both at home and at work.

This past year has been a remarkable one. One of challenge with Quinn's health concerns and the development of Infantile Spasms. One of seeing more and more the reality that all children are not fortunate enough to have a mother who will protect them, guide them, and not hurt them. I have learned a lot through the stories of other people. I have also learned a lot through the story of my own little Quinny. When I was pregnant with her, I was expecting one thing and got another. Just before she turned two, I was expecting her life to progress one way and found out something different yet again. Motherhood is about learning as you go. Adapting. Learning what unconditional love really is. Sometimes embracing a difficult experience because you recognize that you forever changed because of it. Motherhood is about recognizing your need to grow and to learn and sometimes even your need to mother yourself. But it is mostly about the love you feel in your heart when you see your Riley, Aidan, and Quinn sitting side by side. You then realize that they are forever part of you and those little people have influenced you more than anyone else you know.


Sunday, April 25, 2010

Quinn, Please Let Me Cuddle With You

I get to spend some time with the kids today. Hopefully I get to hold and cuddle Miss Quinn before she rushes off, crawling around the house - that girl is on the move all the time now.

I have been thinking about just how blessed I am to have Quinn. God gave me the most precious gift possible, my Quinny. I didn't believe this when I was pregnant and we received the diagnosis, but I know this now. I know that Quinn is perfect just the way she is. I am blessed to have her as my daughter. I wish that all those with a prenatal diagnosis who are going through a scary time could know that someday your heart will overflow with love for your child.

A couple of days ago I was reading up on the blogs that I follow and I found out that a beautiful little girl, Carly, that I sometimes check in on through the cyber world had passed away. I don't know what were the circumstances, but Carly's family is in my thoughts and prayers, especially her mother because I have followed her blog postings about the love she has for her daughter. When I learned about the lost of Carly, I knew what I had to do. With tears in my eyes, I went upstairs and tried to hold Quinn, who of course only lasted about 30 seconds in my arms before she had to crawl off to her new adventure. But just that 30 seconds was worth so much. Beautiful beautiful Carly with her smile and her mother who loves her taught me so much in the beginning of my journey towards acceptance of my daughter and the thing she happens to have called Down syndrome. God bless you Carly.

I found this video today and it really shows how having a child with DS and just surround you with love. You want this feeling to last forever, but sadly it doesn't. I have to go try to cuddle with Quinn again.


Saturday, April 10, 2010

What to Say

So much to say, but then again I really have no details to give you.

For the next six weeks (probably more) I am in limbo of what will come of my career - if major changes will be made to my job which could change the direction of my work dramatically or even impact if I have a job. I really hope the "powers that be" make the right decision, but I am not confident. I could say so much more, an unbelievable amount of stuff, but yet I can't.

But on the upside I know from one of my "side jobs" that I will be ok. I could go there full-time if things don't work with this transition at work. That brings happiness in my heart - it is nice to have a plan B and to be wanted, but quite honestly even though there are a lot of politics that I don't like, I love what I do and really don't want this change thrust on me (I want to keep doing what I am doing and not have outsiders determine the direction of my career). If these changes happen, I will know that I will have to grieve a rather large loss and now I wait eternally for the word of what the decision will be. But I will adapt. Quinn has taught me to do that.

It is just a lot of pressure right now because I am the financial supporter of five people (plus one dog). I worry. I try to get my mind off of this. Then I worry again. Plus I have to perform at work and home, so I have to pull myself together in a reasonable fashion to do so. Another lesson I learned from Quinn, from when I received the diagnosis - the first one and then the second one. DS and IS consecutively.

On the up side, I have been successful in doing some things for myself. I am losing weight. A lot of it. Finally I feel healthy - well other than my aching feet from walking a lot the last few days to get some exercise in. Actually I lied, I am not REALLY doing this for myself, more for my family. People laugh when I tell them this, but I am losing weight to not die. Yeah I know that I can't totally fight death, but I can reduce the chances by not being obese. I am the financial supporter of the family, if I die where would that leave things? Plus if I died and then Neal died where would that leave the kids? More specifically where would it leave the boys in caring for Quinn and ultimately Quinn? I can't just assume that even when our kids are in adulthood, things will go fine. Things are just more complicated now than that. Oh on so many levels things are complicated. But in a world where I have very little control, I can control this aspect of my health and I will do so. Otherwise I hang on for a very emotional and tough ride which will take me who knows where. But Quinn taught me that I will be ok, so I will trust her on that.


Monday, April 5, 2010

Cherish the Rests

Yesterday I started to think about something very important. The importance of rests in music. Our pastor helped me get this idea into my head and apply it to Quinn. Rests are the intervals of silence when it comes to music. They are very very important because without them, the song wouldn't be the same. We need rests; we need to recognize them and cherish them, otherwise the song would not be the masterpiece it is. I experience rests with Quinn all the time. These are the intervals of sameness before she acquires some new skill. I need to recognize that these rests are important and cherish them, not trying to rush to the next skill or part of the song.


Attack of the R-Word

It happened again last week. I was sitting in a meeting of all places. Then one of my colleagues, let's loose the r-word. I look around the room. People avert their eyes, no one speaks up, and they all know I hate that word, but not a single one is going to say anything. It is up to me. So for the one millionth time I have to bring this up. I am so tired of having to always be the only one. It just comes out of nowhere and attacks you and leaves you drained and tired.


Sunday, March 21, 2010

World Down Syndrome Day

In 2007 I learned that my baby girl would have Down syndrome. I was so unsure and scared about what this would involve. I cried many tears. The last almost three years have been full of highs and lows and another diagnosis on top of the Down syndrome (Infantile Spasms). It is today, however, that I think about the Down syndrome and remember how it entered my life because of a beautiful little girl named Quinn. Quinn is the best daughter I could have wanted or asked for - she is my everything. There are points of clarity and I know that Down syndrome has made me a better person. It has taught me so much and helped me meet such beautiful people that I would not have otherwise met in the world. Today I actually celebrate Down syndrome - something I was so unsure about in 2007.


Monday, March 15, 2010

Wiggling Toes

Quinn does the cutest thing every single day. When her shoes and sure steps are taken off, she wiggles her toes like oh, what a relief, that feels so good on my tired feet! Her feet are the cutest little things. Although I swear they don't grow :>)


Friday, March 12, 2010


Delays are everywhere. I delay when I am going to blog. Before you know it, it has been a month. I delay taking time to relax. Before you know it, my back and neck are all tight and knotted up. My life has become a serious of putting things off while I juggle a multitude of tasks. Delays are sprinkled everywhere.

And on top of it, every day I ironically notice more delays with my baby girl.

This is not meant to be a depressing blog entry. I love Quinn more than anything and I appreciate her accomplishments and having her in my life, but I just can't help but to notice how far behind she is to her peers with DS. Life is not meant to be a race, so this idea of "far behind" is a ridiculous one, I know that, but I still see it. It just comes and strikes me out of nowhere.

I guess I was hoping for something more after the ACTH was done. I guess I was deep down hoping for leaps and bounds, but there was a spurt and then another plateau. I am thankful for what I have, but I just have been thinking about this. It is hard to explain, I am not depressed, but aware. What is, just is.

My mind has been going to that there must be something more. I am just going to come out and say this. There must be something additional to DS and IS. My mind is now going to PDD. I am numb to this as well. If it is, it is. I am not going to seek out dx in this area yet, I am just going to watch it, but let's just say I wouldn't be surprised if someone working with Quinn mentions this soon. Last night the only interaction I had with Quinn was the frownie face. It is an adorable little face she makes when she is about to get upset. So so cute. Riley and I laugh and smile. I thank God for the frownie face, but a person would like to see more when they come home and spend time with their child. But this is just beyond my control. I just have to accept if the frownie face is given to me, at least it is something and it is Quinn so it is love.

I am learning to let things go. Just take what you have. If there is a delay, just accept it. Not much you can do about it anyway. I am sure there will be other feelings that I have about this on different days, but for right now, I am just feeling this...


Sunday, February 28, 2010

Aimee Mullins

I saw this on another blog and felt I just had to post it. Such an important message...


Living with a Gift

I love so many parts of this....

I need Quinny more than she needs me.


Sunday, February 21, 2010

Quinny versus Belvedere

This is our dog Belvedere - he is a member of our family. Quinny started a new thing the past few weeks and she likes to go after Belvedere - touching him and tackling him. He has been good about jumping away, but the poor guy is being attacked by that little girl. Maybe he has to stay on the chair like in this photo because she can't get him there.


Saturday, February 20, 2010

Shake Up Stereotypes

Friday, February 19, 2010

This is the LOVE I am Talking About

I Just Want LOVE, Not Politics

I have been quiet lately. A lot is going on, but I just haven't had the energy to blog until now. I have to say this though...

All I want is LOVE and not stupid politics.

I hate politics. Not as much as I hate Infantile Spasms, but still I hate politics a lot. It just gets in the way and divides when people should come together.

And now more than ever politics are interfering with my life.

I get questions about how do I feel about certain people in politics talking about the r-word. Somehow I get connected to another mother who has another beautiful child with Down syndrome who lives in a far off state. I do feel a bond with anyone who is the parent of a child with special needs (only those who have been to "Holland" knows what it is like), but that doesn't mean we are all the same. That doesn't mean I want another person's opinions and actions to be taken as my own.

I don't want Down syndrome to be associated with all this crap. I want to see beautiful images of people with Down syndrome. I want to see uplifting messages and not fighting, bickering, and carrying on.

I do hate the r-word and other insults, but I try to learn from my child and not attack people but educate them. Quinn has educated me more than anyone else in my whole life and she has done it with love, acceptance, and pushing me out of my comfort zone and not with arguments, mean comments, and hate.

I also don't watch shows like the Family Guy (it never appealed to me), and I personally do not have interest in the much talked about episode. Watching a comedic song titled "Down Syndrome Girl" doesn't really appeal to me when I have a beautiful girl who happens to have Down syndrome. That doesn't mean that I am against the episode or anything because I haven't seen it and quite personally I don't think I am in a good place right now to see something like that. I do applaud the beautiful young woman who happens to have Down syndrome who was employed by the show. I want to learn more about real people like her and see her beautiful face.

The thing I am sick and tired of is how even in our own community we get wrapped up in politics. Sides. All that.

I just hate it.

I went back to this clip today. Listen to the very first part. I think everyone needs to learn to be a little more like our kids, even me.


Thursday, February 11, 2010


Want to know how pervasive the use of the r-word is? Check out this sampling...

Please support spread the word to end the word!


Tuesday, February 9, 2010

It Is About More Than American Idol

I cried. I actually cried. Tears welled up in my eyes as I learned the fate of Maddy Curtis. I felt a pain deep down in the center of my heart. I suppose some may think that I went overboard in my reaction to this young, talented girl I don't even know, but tonight was about much more than just a television program. It was about much more than American Idol. It was about acceptance for my daughter. It was about hope for her future being free from discrimination and hate.

Let me tell you about another experience this week, it might help you understand where I am coming from. I went to Target with Aidan this week. We were going along with our cart down the aisle. I could tell up ahead there was a woman with DS pushing her cart. I could just tell from behind - you tend to look for these signs when you have a child with special needs. This was the second time this week alone that I saw someone with DS. Normally I sneak glances at the individual with DS, glancing and wondering will be Quinn's future if this person is an adult, but this time was different. Instead of looking at the woman, I looked around me and took in other people's reactions. I watched the crowd around me. I saw a child watching this woman. He was walking backwards, unable to turn away from her. He had a disgusted look on his face. I saw his mother look and ignore his reaction to this woman. I saw ignorance. I saw discrimination. I saw hate. I decided right then and there that I have been approaching these types of situations entirely wrong. I will no longer steal glances at the individual with DS, I will instead watch those who think that no one is watching them. I will watch them. And I will let them see how it feels. I began staring at the child with a disgusted look on my own face until this child looked at me, noticed, and turned away. Sure, it is a child. I am an adult. Maybe it isn't nice of me, but I am tired of hate, prejudice, and discrimination. I see that this starts early. And it grows. It festers. It turns into use of words that hurt. It causes pain.

I then turned to watching Aidan. Thankfully, he saw this woman, glanced at her, and then kept on talking and going about his business. I was so proud of my baby boy in that moment. I know that Quinn has touched our lives so much. I know that my boys will be better people for having Quinn. I get Maddy Curtis' message. I feel it in my heart.

So why do I care about Maddy Curtis? Because she represented hope for me....hope that others will see the beauty and love in the faces of individuals with DS and the faces of those who love them. Her brothers would have been cheering her on in the audience. DS would have been discussed. Maybe it would have been possible for others to see some positive images of DS instead of the multitude of negative ones. She represented my hope that one less person would stare and look like that at my daughter. I am so sorry Maddy that this didn't work out for you. You just don't know how sorry I am. Thanks for sharing your story and the beauty of having someone with DS in your life. I thank you. Quinn thanks you. We all thank you. It was about so much more than a television show for us.


Thursday, February 4, 2010

The Power of Something

Imagine being stuck in nothing.

Nothing happening.

A whole lot of NOTHING.

Why is nothing happening?

That isn't all.

You are constantly reminded that you are different from even those who are different.

You hear all about the happenings of others - the things they are learning and doing - and then all you have is nothing much happening.

Reminders all the time.

The others - those with DS and those who are typical. Story after story.

You begin to feel like an outcast.

You begin to wonder why you? Why your child? Why?

But I am lucky, I realize. Because now I have something. It is a miracle and a blessing.

The power of something.

Tonight it was unbelievable. Quinn recognized me, smiled a wide smile, and quickly crawled to me.

That is something. Your child recognizing you, moving, and loving you!

This might seem small to some, but it is huge when you were stuck in the muck of nothing.

There is a power to having something happen - especially when you felt that you were destined for a whole lot of nothing.

Thank you something.

I hate seizures. But once again I am struck with what they taught me.

So ironic.


Monday, February 1, 2010

Jamie Fox & His Sister

I so love him!


Dance Like Nobody's Watching

It is February! Wow, where does the time go?

I finally had a little time to explore for more documentaries related to DS. I found this little gem. Please watch. I am in totally agreement with Paul's mother, I am completely different because of having Quinny.


Sunday, January 31, 2010

Out to Lunch

Sorry I haven't been blogging lately. The last two weeks have been very very hectic. Right now I am the only surviving member of my family that hasn't become ill - a little flu bug is going around our house. It doesn't seem to be lasting long, so if I get it, it shouldn't be that much of a biggie.

We finally went to take Quinn's two year old photos on Friday (delayed a few months because of IS and ACTH). I cannot wait until we get them to hand out to people and hang on the wall! I have included a sample here. There are some even better ones too, but this just gives you a taste. My girl is so beautiful I cannot believe it. I am truly blessed to have her in my life.


Monday, January 18, 2010

A Special Olympian

This weekend we went on a little get-away with the kids to Chicago! It was a great time. A cool experience happened when we stopped at Lambs Farm on the way home. Lambs Farm is a place outside of Chicago where some adults with developmental disabilities work. We were standing in line waiting to purchase some things from the bakery, when a woman working there saw Quinn in her stroller. She said to us, "oh we have a future special Olympian here" and smiled a wide smile. She told us how great the SO is. It was a pretty cool interaction and one I will always remember.


Friday, January 15, 2010


Ok I know I have gone on and on about my dislike for the term normal, but for once I like this one...Quinn's EEG is normal. The nurse read us a line from the report that her response to ACTH has been remarkable. I am so thankful that it worked.


Our Favorite

Here is who we are hoping gets through in American Idol!

Also, but the way of update - Still no phone call about the EEG.


Thursday, January 14, 2010

The Waiting Game

Quinn had her follow up EEG yesterday, but they were running so far behind that Neal didn't get to meet with the doctor to go over the results (he had to go pick up the boys at school). Now we wait for a call. Of course, they didn't call yesterday - so we wait and wait and get more and more nervous by the minute. How can it be bad news when she crawls so darn fast now, right?! I can't believe how fast she goes!


Monday, January 11, 2010

Find Yourself

I love the song in this youtube video that I just found today, so much of it speaks to my feelings with Quinn.

Brad Paisley: Find Yourself

When you find yourself
In some far off place
And it causes you to rethink some things
You start to sense that slowly
You're becoming someone else
And then you find yourself

When you make new friends in a brand new town
And you start to think about settlin' down
The things that would have been lost on you
Are now clear as a bell
And you find yourself
Yeah that's when you find yourself

Where you go through life
So sure of where you’re headin'
And you wind up lost and it's
The best thing that could have happened
‘Cause sometimes when you lose your way it's really just as well
Because you find yourself
Yeah that’s when you find yourself

When you meet the one
That you've been waitin' for
And she's everything that you want and more
You look at her and you finally start to live for some one else
And then you find yourself
That’s when you find yourself

When we go through life
So sure of where we're headin'
And we wind up lost and it's
The best thing that could have happened
‘Cause sometimes when you lose your way it's really just as well
Because you find yourself
Yeah that's when you find yourself

What a beautiful video!


Sunday, January 10, 2010

A Miracle

This is absolutely beautiful. Be thankful for what you have because it will forever change you and fill you full of love.


Saturday, January 9, 2010


After I calmed down a bit from the initial shock of the prenatal diagnosis of DS, I began to think about what it would be like to have a child with DS who was one of those superstars. You know, the ones that are higher functioning, at the top of the DS bell curve? The ones you see doing some amazing things or who become self-advocates. This was for sure going to happen to me because, let's face it, I am an overachiever and my children would be too. Nothing else could possibly happen. Right? Yeah isn't that always the way it goes when something unexpected happens to you?

I am beginning to realize that this was the initial way I coped with the diagnosis - the fantasy of a superstar. I don't blame myself for this, I think it is only natural. We have to work on our grief and change in reality in stages and I was indeed grieving the loss of the child that I thought I would have. The superstar was just the next step to help me get along. An important step actually.

I can't predict the future. Who knows if Quinny will indeed become a superstar in her own way, but let's just say she hasn't been performing on the top of that DS bell curve as of yet. For the longest period of time I didn't want to really see that, but I knew it in my heart. I would see the other beautiful superstars out there around the age of Quinny and I would look at wonder at what they were doing and then go back into denial as to where Quinny was at in comparison. Look, turn your head, and then get distracted by something else was the name of the game.

Oh the comparison game, why does it keep happening when we should know better?

But EXCITINGLY I am beginning to see that I will be ok with the idea that Quinny may not be a superstar by society's standards. I am beginning to see that it doesn't matter. I can't control that and I am thankful for what I have. She has started to do a lot more lately, which is great! And in this journey, even with (and I'd hate to admit but probably because of) the crap crap crappy IS I have learned that I love her no matter what. I wouldn't trade her with anyone, not even the cream of the crop of superstars because she is my love, my daughter, my mini me.

I salute the superstars that I see. And I salute those who wouldn't be considered superstars by society, but are superstars in the hearts and minds of their mommys and daddys. All of our children are beautiful and such gifts - all are superstars to someone. And Quinny is my love, my superstar, my everything. I love you baby girl. You always show me the way.


Athlete Ximena


Quinn, You Get OUT of Your Brother's Room!?

So much has changed with Quinn since she stopped the ACTH it is just remarkable. Unbelievable. A blessing. Today she actually kept going into her brother Riley's room to hang out. My little girl would travel from way out in the living room, around the corner, through the doorway and then settle into Ri's room to beat her rattle up against various belongings of his. Oh yeah, she does take her rattle with her. She moves fast - a girl who knows what she wants. Riley just laughed at this. He knows this is happiness and a blessing. We told her to get out. We tried to be serious. We brought her back to the living room, and she would travel there again and again and again. Like I said, I have a beautiful little girl who knows what she wants.

Right now I have relaxation flowing over me and happiness in my heart.

Might seem small to some, but after so long of sitting and doing nothing, this is absolutely heaven.


Music of Opportunity & Sound of Potential

Here is the story of Patrick Henry Hughes. It is very inspiring and shows that in what some people may see as disability, there is actually great ability and love.


Friday, January 8, 2010

Athlete Andy Miyares

If you have not watched this, you really need to. It is a beautiful story.


Beauty of Friendship

I would love to walk into one big hug. How about you?

Thursday, January 7, 2010

Quinny Plays the Drum...Plays the Drum

We have this drum from way back - way back when Riley was a little bitty guy. Now he is half the way to adulthood (he just turned nine). Someone told me that about Riley yesterday and I was like HOLY COW - HALF THE WAY TO ADULTHOOD!!! Sorry, I digress. Anyway, this drum was Riley's toy, Aidan's toy, and then was to be Quinn's.

Up to this point, Quinn hasn't really ever played with a toy other than just using her rattles (which she loves) and accidentally here and there hitting keys on the piano (just randomly and not purposefully).

I felt stuck like will my girl ever play with these toys of her's, even the hand-me-down ones from her big brothers.

Tonight I saw a beautiful thing - my little girl was playing with the drum.

She would purposefully hit her rattle against the drum and then the song would play "everyone play the the drum." She would pause during the song and then once it was over, hit the rattle against the drum. Over and over again she would do this on purpose.


With the boys, I just took things like this for granted - what it takes to do this, to think this through and make this decision and figure out the toy. Thank you Quinny for always showing me the way and teaching me to stop and consider the beauty of the "small" stuff. Small stuff can be HUGE and worth celebrating.


Wednesday, January 6, 2010

Athlete Charles Howard

Bring on the positive stories for 2010!


Tuesday, January 5, 2010

The New Elite

I was listening today to someone talking about how they did not feel like they are normal. A very powerful story this person had. You could just see the power of normal.

NORMAL. A word that I never had a second thought about before now has great significance to me.

Yesterday I was eating lunch with three other women and they start talking about their lives. It doesn’t take me long to realize that I cannot relate to one thing they are saying. I am abnormal. Nope, I am not a normal woman, mom, wife, etc – I don’t say a word, fearing my abnormal ways will stigmatize me. Then the conversation turns to talking about one person’s 10-month-old grandchild, who is starting to walk. How exiting! I have been there twice before with the typical development of the boys and how smooth that all goes. Ummm…inside I ask myself, what is Quinn doing now? Well, gee she just started crawling – let’s recap, she is two YEARS old. Yep, that is not normal. Ok I really need to be quiet now because these women certainly don’t want me to say anything and upset their normal little worlds. Later I tell someone how I didn’t appreciate how a professional person left me a voicemail with the r-word in it. The person said oh they were probably just quoting what the mother said. Yep, I am not normal. I am overly sensitive.

You know what, I have realized that I really don’t want to be normal. I don’t want my daughter to be normal. I want to learn AND grow AND become more sensitive to what other people go through. I don’t want to just assume that everyone walks the same line. That is hurtful. It happens FAR too often and even amongst some people who should know better. Normal is over-rated and desiring it can make some miserable or superficial. Atypical is where it is at. I am part of the elite!


Monday, January 4, 2010

The Perilous Journey

If you think about it, movies and books are filled with adventures like the ones I have experienced, a perilous journey of which you encounter who knows what that takes you far from the reality of what you know. Think about Wizard of Oz, a story that involves such a journey. Dorothy survives with the help of three friends who thought that they didn't have everything that society valued. However, in the end these friends really did have their own version of it and there was such value there. Doesn't that sound familiar?

We have journeys in life. It is those journeys that teach us what is important. It is those journeys that lead us back to home, family, and our relationships - what is truly important. I am blessed to have experienced such a journey. That is the positive thought for today.


Sunday, January 3, 2010

Way to Go Reece's Rainbow

Grab This Button

Wow - look at all the children helped though Reece's Rainbow this holiday season! I am drawn to this website and tend to think about what would Quinn's life be like if she was born elsewhere to another mother. I smile when I see Quinn crawl across the room surrounded by love of a family - hopefully others through Reece's Rainbow can experience the same. It is truly a blessing to have Down syndrome in your life, for it teaches you what is really important. I am so glad we sponsored Ivy through Reece's Rainbow and we pray she finds a family this year. If you didn't participate in this project this year, please do so in 2010.


Saturday, January 2, 2010

Andrea Friedman

Watch this inspiring story...



Friday, January 1, 2010

I'm Positive About 2010

The past week I have thought a lot about negativity - how it can surround us, consume us, overtake us, and ultimately destroy us if we let it. This negativity can originate from our own negative thoughts within ourselves and/or amongst the negativity of some people we may know and associate with. I have a lot of things I would like to work on this year, but they all seem to fall within this area - the need to surround myself with more positive. Positive radiating from myself and the others I choose to have in my life. This is not only for myself, but for my children - they need more positive in their lives too since our world can be overly critical. So I am on the lookout for positive people to discuss and sharing positive thoughts - this doesn't mean that I won't complain (eliminating that may be difficulty depending upon the circumstances). But I am going to be more positive in 2010. Won't you join me?