I feel happy that my children have so much interaction and influence from their father (yes, Neal I am talking about you if you are reading this). I love these PSAs - maybe someday Neal will cheer with Quinny :>)
Our anniversary was nice. We went out for drinks and dinner. I felt like a grown-up for once - ha ha. Maybe we can be grown-up more often because we found out this week that we qualified for respite care, which is way cool. What it involves is that we will get reimbursement for child care for so many hours each month for us to go out or take a break. It is through an organization for families with children with disabilities. We applied for it right after Quinn was born, and our name finally came up on the waiting list. Now the true test will be actually taking the time to use the hours. It would be nice though - especially for Neal - since he spends so much time with the kids. I think that is a nice idea this respite care, to help families and parents. So many times we hear about the negative stuff - like the risk of divorce, but this counters that.
Now to the title of this post...Aidan just cracks me up. Last night after Neal and I came home, the boys were still up. Aidan came over and sat by me. He was kissing me (little pecks on the lips) and then when Neal asked me a question (interrupting the kiss), Aidan replies "Um we are having a moment here!" Where does this guy get this stuff?? Just two more days until he starts Kindergarten. I am getting my Kleenex ready.
Today he asked me if I would break up with his dad, so he can marry me. The day after our 11th year anniversary, he asks me this??? The guy has no shame - ha ha. I explained to him that the day will come when he won't want to marry his mother (gee I hope it does), so he will someday thank me for not breaking up with his dad. There is never a boring moment around here. Riley just laughs at such conversations and Quinn doesn't know what a goofy bunch she has joined into.
I feel like school is starting for me too. Tomorrow I go into work on a Monday for the first time in 10 years. I changed my schedule to make things more manageable. I will also start teaching at MU tomorrow night - I am way excited!!!
Eleven years ago, on a Saturday, Neal and I were married. It was the end to a crazy, crazy week which included Neal and friends moving our stuff to Evanston, my dissertation defense (note that your committee is nicer to you when they know you are getting married in like three days), my last day of my internship (the day before our wedding), and then all the usual wedding stuff on top of it - rehearsal dinner and actual wedding. All that should have been foreshadowing for how our life would be - always action packed, a lot going on, fast-paced, and never boring. I thank Neal for putting up with that part of me because I have a feeling it really originates from me and my tendency to over-extend myself.
Since our wedding 11 years ago, we have moved twice, bought our own house, had three beautiful kids, taken vacations, changed and left jobs, experienced losses, loved life and one another. I am not a mushy person (anyone who knows me, knows that), but I am taken by this 11 years thing. Maybe because this is the first time that our anniversary actually came up on a Saturday in all the 11 years. Maybe because I look at our beautiful children and think that they wouldn't exist if it wasn't for 11 years ago. Maybe because 11 years is a long time - longer than 10.
Thank you Neal for the past 11 years. I know I am not always an easy person to live with - with all my quirks and all. But thanks for the commitment. That commitment and partnership is so important in raising children, especially one with a disability. Looking forward to the next 11. Love, Karyn
When the movie was released, I had of course heard about the protests and controversy surrounding Ben Stiller's Tropic Thunder. I eagerly read reviews from individuals from my online support group and often wondered what I would think about the film. I wasn't about to spend money on the movie and couldn't bring myself to sneak in there at the time, but I wanted to see for myself what this was all about - the best scenario for me was to watch it without a crowd and not pay anything directly to the movie. Well finally the film came on HBO, which we already have. I ended up watching the end first and then catching the beginning later because of scheduling and poor planning on my part. And quite honestly, it would have been torture for me to watch that movie in one sitting. Obviously I have bias about the Simple Jack stuff, but all and all I must say in my opinion I thought the film was very poor. I get that it was a satire - I just didn't find it very funny.
Four parts bothered me - the clips/portrayal of Tugg Speedman (Ben Stiller) playing Simple Jack, Speedman and Kirk Lazarus (Robert Downey Jr.) discussing going "full r-word," and two scenes related to Speedman's agent Rick "Pecker" Peck (Matthew McConaughey). It is of these two scenes that I want to speak. Speedman wants to adopt a child. Peck says to him something to effect of "Well at least you can pick yours, I am stuck with mine." And then the camera cuts to a photo of his son who appears to have a developmental disability (not DS). The second scene is at the end of the film where you see Peck and his son on a plane. They are sitting across the aisle from one another, not interacting, and his son is wearing a bib to catch drool (or at least that is what it looks like since he doesn't appear to be eating). It is obvious he has some not so positive feelings about his son. I was very disappointed in these two parts. Granted they were a very small part of the film, but they just further perpetuate a stereotype that having a child with a disability is the worst possible thing that can happen to a parent. To this scene and that view, I do have to say that I did have a choice and I choose to have Quinn. I was never stuck with her. I am blessed having her, as she has changed me in so many ways.
Having a child with a disability is not just a burden or a horrible circumstance to endure, as portrayed in brief moments in this film. It can be a life changing, positive, self-actualizing experience. Just yesterday I saw an old student of mine that I hadn't seen since pre-Quinn days. It was so nice to catch up with her. I was talking to her about a psychopathology course that I was teaching this fall. I told her how I am having the students read The Short Bus by Jonathan Mooney because in addition to learning about diagnoses, I want them to learn about sensitivity. What good is one without the other? We need to include both in such a course. She looked at me and said something to the effect that she can see that Quinn has impacted me for the better. There was something beautiful in her eyes at that moment, like she really saw this in me and respected the blessing of that and of this little girl. I felt peace in my heart knowing that this little girl will have an impact on so many future clinicians in the field (that is, if the students listen to me). I am not stuck with her - I was made better by her.
The options in this journey is to either let the experience destroy you/turn you into someone you aren't proud of (Peck's option) OR use it to better yourself, to learn, to experience a whole new world. I choose Quinn and the latter.
The future is a big unknown for me when it comes to Quinn. Most of the time, I just try not to think about it. I try to stay in the here and now and avoid any thoughts about what will be her life in the future. I think it is in the future where most of the thoughts and assumptions that I had way back when about individuals with disabilities seep in. It is the point where I am most vulnerable to the stereotypes and assumptions.
But these are the things that I do know. In the future, Quinn will...
Have style! Be happy! And define herself!
Things like the following clip make me happy when I see the happiness on these young adults' faces.
Whether it be in a forwarded email (those are the worst, aren't they), a posting online, or something I overhear one person saying to another, lately I have heard some bias. I have bias too - everyone has it. But I personally think it is important that as a parent of a child with a disability that I examine and re-examine my own bias, where it is coming from, and does it really need to be expressed. For if I expect some people to refrain from their use of the r-word and be more sensitive to those with developmental disabilities, then I myself have to look at my own insensitivity. That is why I like this PSA. It is a nice reminder on so many fronts.
I am taking the week off my full-time job to spend a little time with the kiddos and prepare for next semester classes (gotta get on that last goal since I haven't done squat the last few days). Anyway, today I went shopping with the boys to prepare for school. I KNEW this would be something! And I was right, oh my. Riley was his usual self every year we go shopping - all about the style, picking out clothes - that is, he was that way when he was NOT yelling at Aidan. This yelling then only got Aidan upset and at one point we had an altercation in the middle of the store. Aidan was how I expected him to be - carrying on about how "sexy" he is (why in the world does he talk like this), getting bored, doing things like licking the mirrors, and then MESSING with his brother. Thankfully, it is over and we are D.O.N.E. Do you doubt me? Just see these photos of their personality and you will see what I am talking about -
Ok it was a difficult week. So now it is time for some comic relief. Maybe because of the difficulty of the week, I should say that the clip does get a little fiesty - ha ha. I have seen Colin and Brad in person twice and they are fantastic - tears of laughter flowing down your face! Very cathartic.
It is a chromosomal disorder caused by the presence of an extra 21st chromosome. It is named after John Langdon Down, a British physician who described the syndrome in 1866.
But this definition is missing so much!
The definition above completely misses the mark in showing how Down syndrome can make your life better, richer, fuller, and pack it full with love. Down syndrome can bring you closer to the most beautiful, giving people in the world – people you wouldn’t have otherwise met. Down syndrome allows you to learn the joy of truly unconditional love for your child. Down syndrome teaches you that in something that brought you such pain, such as with the diagnosis of your child, such beauty and intense love can grow.
This is what Down syndrome really is. For the second year, our family is joining forces with another local family for the Down Syndrome Awareness Walk on Sunday, September 27. Because Down syndrome brings you closer to others, it is only right we walk with another family together as one team.
Down syndrome also is about struggles. Like the struggle of seeing your child develop at a different rate than typical peers. The challenge of possible complications in health. The challenge of advocating for your child to get the services they need. And, perhaps the biggest challenge, the challenge of discrimination, such as limited access to services, use of the r-word, jokes, and other invalidations or insensitivities.
This walk is important for many reasons. It helps us raise money for families and individuals with Down syndrome. This walk brings awareness to others of the beauty, love, and togetherness of Down syndrome. And this walk supports those of us on this journey of such highs and lows in our lives. Last year our team was huge in numbers, full of love and raised $4,150.00. We are proud of the photo of our 2008 team. It was beautiful to see the love and support we received from our families, friends, previous students, colleagues, and members of our church. We also received so many words of encouragement for the walk and the importance of this encouragement was priceless. Please help us this year by doing something. Some ideas: Join our team, start your own team, donate to the awareness walk, spread the word about our walk, pray for us, help others see that the r-word hurts others (don’t just let it pass someone’s lips without saying something), spend time with someone with Down syndrome, share our story – and the list can go on and on. Just please do something! We will forever be grateful.
So I tried to put my previous bad day at work behind me. Every day is a new day, right? Well the next day was not much better. Right away first thing in the morning, a staff (ok, she DOES have the reputation of being an insensitive person) uses the r-word to talk about a kid who I am going to see in her building.
I stayed calm, although my blood was boiling. I said I do not like the r-word, please don't use it in my presence (never mind how disrespectful to say that as an adult about a kid who is actually above average intelligence). OK I get Toltz's statement in my previous post - she is one of those people who would laugh and make fun of people with cognitive disabilities even as an adult or in old age. Unbelievable.
Then I talked to one of the adults in that group I observed the previous day where the r-word was used a lot. She said she didn't notice it at all. Despite the fact that I believe we once talked about this subject previously. Am I the only one who cares?
Please let today be a better day! Yesterday for the second day in a row I felt chewed up and spit out. Two more work days until vacation (from at least one job - ha).
This was a horrible, horrible day on many fronts. Mostly because of other people not thinking or caring about the impact on others. What I had to deal with today...
Scrubbing graffiti off of a youth bathroom at work that wasn't from my group of kids, but if left there I would certainly become the scapegoat.
Realizing that someone else was not watching the kids they had in my room (who also ironically did the graffiti - notice a pattern), who proceeded to steal my febreze, dry erase marker, and most upsetting my DS awareness calendar. What is up that you can't notice such a thing happening right before your eyes!!!!!!!!!!
Then recovering my DS calendar (and febreze) and finding that the calendar was defaced and used to put graffiti (notice graffiti again, gee could this be a pattern) and all sorts of other things on it. Most upsetting is that the kid drew all kinds of "funny" (term used loosely) things on the kids on the calendar. Wow so nice. It is basically unusable.
All I wanted is to create a little awareness of special needs at work, and I get this crap. I am not as upset with the kids as much as how this was allowed to happen - adults should know better than to allow this. A little common courtesy and watching out for my stuff would be nice. Soeren Palumbo is right, the biggest problem is the adults.
Oh and then I was doing an observation today and over and over again I heard the r-word. I couldn't comment because I was only observing. Of course the adults in the room said nothing.
Well on the positive side, my own group of kids were outraged that someone did that to me...so that shows caring. In addition, they don't use the r-word anymore because I talked to them about it. If it happens to slip out, they point it out to one another and apologize.
I guess I have to learn that all I can really impact is my own little world - that is if someone doesn't come in and let others take and misuse my stuff.
Tomorrow is another day. Counting down the days until vacation.
I read the book A Fraction of the Whole by Steve Toltz for my book group discussion tonight. Martin, one of the main characters in the book, says there are four types of people in the world: those obsessed with love, those who have it, those who laugh at r-word people (great language, huh) when they are children, and those who laugh at them into adulthood and old age. When I read this originally, I was outraged, what does laughing at those with a cognitive disability have anything to do with types of people? But now I get it, it is all about character and integrity. Actually Martin is missing a category...those who stand by and allow others to laugh at those with a cognitive disability and DO ABSOLUTELY NOTHING - to me, they are the worst. And today, what pains me most is that I "had" to be one of those people during that crappy observation.
Are people with Down syndrome discriminated against in our health care system? YES. Even Quinn who has been PERFECTLY healthy has been. To me, it is a disgrace that this happens.
Here is the National Down Syndrome Congress Position Statement (found here online):
Why do we need health care reform?
People with Down syndrome have been and continue to be discriminated against with regard to access to health insurance, solely on the basis of the diagnosis of Down syndrome and without consideration of their individual health status or health histories.
For those people with Down syndrome who do have congential or other health conditions requiring medical intervention, insurance companies have denied them access because of their preexisting conditions.
The whole issue of access to health insurance places an extraordinary burden on families and persons with Down syndrome and other disabilities. Families and adults with Down syndrome are forced to consider issues of obtaining or maintaining health insurance coverage above career and other significant life decisions. Even when they are able to access health insurance coverage, the financial cost can be exorbitant.
Both historically and within the context of reform movements, people with Down syndrome and other disabilities face considerable challenges to accessing quality care. People with Down syndrome are entitled to receive any and all treatments that are medically indicated. Proposed health care delivery systems which involve rationing of services threaten to have a disproportionately negative impact on persons with disabilities. Quality of life defined by persons without disabilities is not an acceptable rationing criterion.
What features must be included in any health care insurance reform plan?
• Universal access to health care insurance; • Comprehensive coverage which cannot be denied because of health or disability status; • No pre-existing condition exclusion or waiting persiods; • Portability - one does not lose health insurance if one moves, changes jobs, or loses a position; • Community rated premiums, that is, health plans must charge everyone the same rate, regardless of health or disability status; • No lifetime caps on medically necessary and/or covered services; • Choice of service provider and specialists who are appropriately trained and committed to meeting the medical needs of people with Down syndrome; • Affordability.
Should long-term care (Medicaid) be included in any health care insurance reform proposal?
Although many of the health care insurance reform proposals do not address the issue of long-term care reform, those that do significantly restrict eligibility for persons with Down syndrome in ways that would deny home and community based services and supports to them.
In view of the following circumstances:
• The longstanding need for comprehensive Medicaid reform; • The complex nature of the needs and of the existing system of long-term care; • The reliance upon Medicaid funding for long-term care services, including residential services; and • The barriers to service created under proposed eligibility standards. The NDSC, therefore, recommends:
A reform of the long-term care system, independent of any health care insurance reform proposal, so that fair and adequate attention can be given to meeting the needs of people with Down syndrome and other disabilities.
The NDSC sees the national debate over health care as an opportunity to address the problems persons with Down syndrome and their families face in accessing quality health care services. We support the enactment of truly universal, comprehensive health care that is equally available to all Americans, regardless of health or disability status. We believe that adequate health care is a basic human right.
The NDSC believes that any federal or state health care reform proposal must be based upon the principles of Non-discrimination, Comprehensiveness, Appropriateness, and Equity. The only acceptable health care reform proposal must offer guaranteed, comprehensive health care to ALL Americans.
Please quote fully and reference National Down Syndrome Congress,
Prepared for and Approved By: The Professional Advisory Committee, National Down Syndrome Congress January 20, 1995
"The right to play on any playing field? You have earned it. The right to study in any school? You have earned it. The right to hold a job? You have earned it. The right to be anybody's neighbor? You have earned it."
-Eunice Kennedy Shriver
I have been meaning to post on this, and just haven't yet. I have thought about it a lot.
But now it is time.
I want to thank you Eunice Kennedy Shriver for all you have done for my daughter. You never met her, but your work has undoubtedly helped enrich her life. Whenever I think about how you dedicated your life's work to making the world a better place for individuals with cognitive disabilities, tears of appreciation well up in my eyes.
God Bless you in heaven, because you certainly deserve being there. Your family is in my thoughts and prayers at this difficult time.
You are an inspiration to us all. A person will be made a better person by knowing and loving someone who has a cognitive disability.
For a great tribute to Mrs. Shriver, go to this site.
God's presence in my life. My beautiful and loving family. They are my heart. Stability if my life. Health (physical and psychological) - my health and my family's health. Learning every day from both good and bad experiences. That extra chromosome, for it led me here. I recognize right now it was what I needed in my life. All the opportunities I have been blessed to have. My friends for the support they provide me. All the people I work with for what they have taught me about the world. There is so much more too....this is just the beginning....
This week has been a hectic one of changes, hence the absence of postings. It is my last official week at an adjunct teaching part-time job I have had since Aidan was a itty bitty baby. Time flies - he is five now! Looking back on things, I know this job has really helped me in a lot of ways - it brought me back to my passion for teaching (I used to play teacher as a kid), it helped my daily work with my own clients because I was constantly reminding myself about important topics in the field, and it helped my family out through some difficult financial times when Neal was laid off. In addition, having this job gave me the experience to go for other adjunct teaching jobs which are more prestigious, so I guess one could look at it as a stepping stone. I am generally a loyal person (I have been at my full-time job since 1997 and have no interest in leaving), but with this part-time job I am leaving, it is time for a change. I am still trying to figure that one out, but I have this feeling in my heart that I am totally doing the right thing by saying goodbye. I feel a sense of peace with this decision. It is just time for me to go. I am happy that I have had this experience for all these years and I met some truly wonderful people along the way. I have also experienced some more recent things that made me really think about my profession, my role in it, and what I truly want to be a part of. This isn't necessarily bad - it is probably all for the best - we should examine such things. For all of you reading who may have a clue about the specific place I am talking about and if you have some connection to it or this situation, thank you so much for all you have given me and for your support over the years. Now it is time for me to have some new adventures!
I finished teaching my multicultural counseling class. As I mentioned before, I just wanted to comment on disabilities as being an area of diversity, like race, age, sexual orientation, religion, and gender. Expanding on the minority model of disabilities that I mentioned before, here are some thoughts I have on that topic…
There is diversity within the area of disability as well, including in the area of Down syndrome. Quinn has some of the same experiences and different experiences as other children with Down syndrome her age. This also applies to typical children too – she has had some of the same and different experiences to typical children her age. The problem comes in when certain assumptions are made.
Some problematic reactions to those with disabilities range from ignorance to lack of understanding to being overprotective to being overly sympathetic. There are reactions of support and love too. The main issue with the problematic reactions is often not the disability or the person with the disability, but the person who is reacting – their own attitude, bias, and personal fears/baggage related to disability. We must look at ourselves and grow. Especially when we are having a strong reaction! I know this was the case for me. Just read my scrapbook post.
Because society likes to categorize, some individuals may assume that a disability in one area impacts other areas. This can be very frustrating because a person could have a talent in another area. If a person accomplishes something (like Karen Gaffney or Christopher Burke) others may think these accomplishments in certain areas (swimming or acting) are superhuman. They are just individuals with talents, not superhuman. Or there may be the other extreme – individuals with disabilities may be seen as being afflicted or the victim of the disability. Quinn does not suffer and she is not a victim.
There is a need to recognize they are a person first – pay attention to person first language. Quinn is first and foremost Quinn, a person. She is not a DS kid. She is Quinn, an individual, so much more than just DS.
Look at each individual, but also learn about the disability. If you don’t know something, don’t assume – just ask and admit you don’t know. Do not solely focus on the disability. Sometimes the problems isn’t mostly the disability, it is more of the environmental contributions to problems.
There may be two types of errors made: errors of omission and errors of commission. Errors of omission involve failing to ask about certain areas because of assumptions about the disability (e.g., relationships and that they may not have romantic interest). Errors of commission involve bringing up certain issues because of the disability. Personal problems are assumed to be result of disability. Not all experiences are because of the disability – there are individual and universal factors too.
Listening to this song speaks to me on recognizing that this experience of having a child with Down syndrome is actually a blessing. A few years ago (in all honesty) I never thought this would happen to me and it would certainly not have been something that I would have chosen - BUT it is something that has taught me so much and made me a better person. For this, I show my gratitude. I am going to try to post more about gratitude and good things...
The lyrics to the song:
Send some rain, would You send some rain? 'Cause the earth is dry and needs to drink again And the sun is high and we are sinking in the shade Would You send a cloud, thunder long and loud? Let the sky grow black and send some mercy down Surely You can see that we are thirsty and afraid But maybe not, not today Maybe You'll provide in other ways And if that's the case . . . (Chorus) We'll give thanks to You With gratitude For lessons learned in how to thirst for You How to bless the very sun that warms our face If You never send us rain Daily bread, give us daily bread Bless our bodies, keep our children fed Fill our cups, then fill them up again tonight Wrap us up and warm us through Tucked away beneath our sturdy roofs Let us slumber safe from danger's view this time Or maybe not, not today Maybe You'll provide in other ways And if that's the case . . . (Chorus) We'll give thanks to You With gratitude A lesson learned to hunger after You That a starry sky offers a better view if no roof is overhead And if we never taste that bread Oh, the differences that often are between What we want and what we really need So grant us peace, Jesus, grant us peace Move our hearts to hear a single beat Between alibis and enemies tonight Or maybe not, not today Peace might be another world away And if that's the case . . . (Chorus) We'll give thanks to You With gratitude For lessons learned in how to trust in You That we are blessed beyond what we could ever dream In abundance or in need And if You never grant us peace But Jesus, would You please . . .
My little bubbie turns five today! Where did my preschooler go? He starts Kindergarten in the fall AND now he is five. He is VERY excited because today is his birthday party!
Some of the best things about Bubbie:
-He has spirit. -He isn't shy about expressing how he feels. -He wants to marry me :>) -He has the best laugh - boy does he love to laugh. -He is strong. -He is loyal. -The eyelashes - just wow.
Here's a happy birthday song for you, Aidie!
Lastly, here is a story I wrote a while ago about my Bubbie -
My Bubbie, Aidan:
Quiet. My life was just too quiet before my Aidan came into it. Aidan is all about spirit, determination, and just plain spunk. He helped make our house a home. He helped make us a family. It all started when we wanted a second child for our family, a sibling for Riley. Before we knew it, we had a little one on the way. The pregnancy went well. No complications. On the day of the ultrasound, Neal and Riley were so happy when they found out that the baby was a boy. I remember watching as they pumped their fists into the air. Like a victory that they would outnumber me. Since Riley was born three weeks early and because I was already dilating, my doctor decided that we would “strip my membranes,” so that Aidan could come the weekend she was on call. Aidan started to show his attitude. He waited until Monday to come! In case you didn’t know, a key part of Aidan’s personality is that he will do things when he wants to and on his own. My water broke late Monday afternoon when I was home alone with then three-year-old Riley. We rushed around – called Neal to come home from work. By 5:30 pm we were at the hospital and Aidan arrived at 9:30pm on August 2, 2004. 8 pounds 12 ounces and 20 inches long. STONG STRONG STRONG. That is Aidan, strong – at three-years-old he could pin his then seven-year-old brother on the floor. He showed his attitude for the second time by coming into this world face-up and needing the suction cup to assist him into making his grand entry. Figures, he always wants to see what is going on. Riley LOVED having a little brother. He insisted on taking a photo of him to preschool the next day. He wanted to hold his little brother and kiss him over and over again. They fight occasionally now, but there is still a bond so strong between those two little guys.
Memories….like photos flashing before me in my mind. In no particular order. Aidan peeing on his daddy time after time during his diaper changes. Dancing to Salt – n – Pepper’s “Push It.” Coloring on his legs. Calling a blanket a “night night.” Demanding to watch his “show” or get his juice cup filled. Saying “I can’t want.” Broken arm – daddy what were you thinking by putting him up on the counter? A hospital stay at 18 months for a staph infection. Scary time – wondering if my little Aidie would be ok – having to fight him in helping the nurses get the IV where it needed to go. Going with him as they wheeled him into surgery. My little Bubbie. That is what I call him. That or Aidie. Bubbie comes from a joke that we told Riley. He wanted to know who did something in the house (I don’t even remember what it was), but it was obviously spirited Aidan who did it. We told him it was Bubba from France, which turned into Bubbie. Or Bubbie Sweet. Only mommy calls him Bubbie. Aidie was a nickname that Riley came up with. One that stuck. Aidan introduced himself at three-years-old as “Aidie.” The cutest thing you ever will see. More memories…laughter, wrestling with Riley, bloody noses, yelling, eating, loving ketchup, running, climbing, jumping, moving, moving, moving. Aidan cuddling with our dog, Belvedere, telling him that he is his best friend. Aidan as a baby getting so angry if you ate anything in front of him without offering it to him. His daycare teachers said they never saw anyone quite like that. Getting weaned from breastfeeding because “he decided” – same with all other milestones – bottles, potty training, sleeping in the crib. If Aidan wants something, he goes after it!
When he learned that he would have a little sister, it took him a while to get excited. We turned the corner the day I was telling the family about my recent ultrasound of Quinn and how the doctor saw her chubby cheeks. Aidan laughed and laughed. He said she had chubby butt checks. I tried explaining, but he wasn’t getting it. He started talking about how they had to move her underwear to see her butt cheeks. Imagine his vision of her inside mommy – fully clothed, maybe even wearing shoes. When Riley tried to explain that Quinny (as Aidie calls her) was naked, he laughed and laughed. Imagine being naked. Riley pointed out that Aidan entered the world naked as well and that EVERYONE saw his penis. Laughter…laughter…laughter. Aidan brings so much laughter into our home.
Aidan will be an awesome big brother to Quinny. I know he will challenge her – he challenges us all with his energy and drive. I can also see that he will be her protector. He loves his little sister.
Eyelashes. Aidan has the WORLD’s LONGEST EYELASHES. They melt your heart. Even when you are as frustrated as can be over something he just did. The other day I told him that he has my eyes. He hasn’t understood this before, but on this day he went to the mirror, looked, and finally got it. He immediately started to shout out how he has mommy’s eyes and Riley has the same eyes and Belvedere, the dog, does too (that took more explaining, how Belvedere isn’t related to us all). When I look at Aidan I see parts of myself. I see my spunk, my stubborn ways. OK I finally admit that he must get this from me (don’t tell my husband, Neal, or my mother who told me to watch out someday). That is why I always say Bubbie to him. It is like some little connection that he and I have. He is part of me, and even though at times his strong mind can be frustrating – it is the same strong mind that I possess, so I have to smile. And I know that this strong mind of his is going to make him a success someday – along with the eyelashes!
As I am writing this, I hear Aidan’s voice. He brings excitement, laughter, and a family into our home. I need Aidan in my life as much as he needs me. We are two of a kind, my Bubbie and me!
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.