Life As We Know It

A few changes

2009-07-13T16:44:00.003-05:00

I have been feeling uneasy lately about how much personal info is on my blog. I'm not sure why, because in general I try to keep things fairly vague. But, my kids' names and our last name are all over it, which is starting to make me uncomfortable. I'm sure I'm paranoid--I'm the first to admit that I'm a safety-freak when it comes to our kids, just ask my hubby about buying carseats! Anyway, I know that by putting info about our life in the public domain, you always take a risk, but I would like to minimize those risks. So I'm shutting down the current "Life As We Know It" and changing the web address to www.celebratinglifeasweknowit.blogspot.com On that web page, you will notice a few changes, but most of the old stuff is there. So this is my last post here, the rest will be on the new page. I'll delete this site entirely at the end of July. Everyone update your links so you can stay up to date on our happenings!

Open Heart Surgery is Over

2009-07-02T23:36:00.004-05:00

On Friday, June 26, 2009, Anna had her AVSD repaired! Dr. Heart Surgeon said that he was able to patch the holes and to fix the valves in Anna's heart so that her heart is working the way it is supposed to now! Hooray!! After a short four day hospital stay, Anna is now home and continuing to recover. There have been a few bumps along the way during the recovery process so far, but in general, Anna has done fantastically well. Right now my biggest complaint is that the hospital totally messed up Anna's sleep schedule and sleep habits; but hopefully those will go back to normal once she is fully recovered. I am SO SO grateful for modern medicine and technology that makes her heart repair possible! In other great news, while we were in the hospital, Dr. Ears did an ABR to see if Anna had any hearing loss (she failed her hearing screens twice) and apparently her hearing is PERFECT! Thank you all for your thoughts and prayers, we feel so blessed!

Here's Anna the night before surgery.

This is how she looked right after surgery--OUCH!!

Here she is the day after surgery--it's amazing the difference that 24 hours makes!

Today Anna started being all smiley again, so I'll have to try to get some pictures of her so everyone can see her at one-week-post-op.

Prayers

2009-06-25T20:51:00.003-05:00

Tomorrow is Anna's surgery--please everyone keep her in your prayers that all will go well and that she will recover quickly.

Perspective and a $25 box of freezer bags

2009-06-22T23:11:00.002-05:00

In the past few months, I have had a major life paradigm change. Even though I have been highly aware of many differences in myself, sometimes it still catches me by surprise. The other day a "Surprise--You are different!" moment came when the phone rang. The young man on the other end was calling from Disability America (I think that was the name)--a business that allows people with disabilities to have a job and be independent by calling people and selling household items like light bulbs, freezer bags, kitchen utensils, etc. As soon as he started talking and explaining his cause, I knew I would order something...ANYthing to help him out. As he listed his products, I chose freezer bags...not because I NEEDED freezer bags, but because I was thinking about how my freezer is currently full of little bags of milk for my daughter--hours of pumping effort to give my daughter the best start that I possibly can. When I told him I would order, I could hear the excitement in his voice (I used to work for a phone-survey company in college and I know how exciting it is to get someone that will actually talk to you and be nice!) and I didn't even ask how much the box of 36 bags cost. As this polite young man struggled getting my address right (our street name is pretty tricky, even for those without disabilities) I admired him for sticking with a job that is at best, miserable--but one that he could do to be independent. I thought about his mother and how she is probably hoping that there are enough people in America that will buy household items from her son so he can do his own thing and strike out on his own--a mother who is probably hoping for the best for her son, just as I do for my children. When he finally told me my total--$25...I was slightly shocked--who will pay $25 for a box of gallon sized freezer bags??? And I realized that I will. As I hung up the phone, I had a moment of self-reflection. A year ago, I would have been off the phone within the first 5-10 seconds of the call...but now I would give that young man all the time in the world. I realize that I can't afford to pay $25 for freezer bags every time, but I hope they call again, next time I might need some light bulbs.

Family time

2009-06-21T23:38:00.004-05:00

This week was pretty lazy. After the chaos of last week, it was nice to not have any big plans. We went to the zoo on Saturday afternoon for a family outing and got some cute pictures of the boys. Not surprising that Anna slept through it! It was a pleasant afternoon--nothing particularly noteworthy happened while we were there, but the joy of just spending some happy, relaxed time with my family always makes life a little sweeter.

Week In Review

2009-06-14T22:47:00.007-05:00

It has been quite a week at the Roberts house this past week or so. Lots of different things going on, so this will be a random smattering of info post.

Last weekened was Anna's baby blessing and lots of family came to visit. Tate and Rylan had so much fun playing with all of their cousins but Anna, the lady of the day, slept through a lot of it. After the whirlwind weekend, I realized how few pictures I had taken--what a bummer!

Here are few of Anna--she wore the dress/bonnet that I wore when I was blessed--how cool is that?? Funny story--Darrin got her dressed before church on Sunday and put her in the car before I was ready, so I didn't see her until we were walking into church. As I peeked into the carseat to see how she looked, I noticed that the bonnet was on upside down and backwards--oops! I guess we're still learning about all the girl accesories! We fixed the mistake and I think she looked pretty cute.

Tuesday,Wednesday, and Thursday I spent getting ready for a Garage Sale--I ended up getting rid of almost a whole vanful of stuff--yay for less stuff to have to move! Thanks a ton to Heather who helped me price everything and let me join her and her other friends for the sale. There is something freeing about getting rid of stuff and it's always a bonus when you make money doing it too!

Thursday was also a big day because we meet with Dr. Heart Surgeon at Children's to learn more about Anna's upcoming open heart surgery. Darrin and I decided that Dr. Heart Surgeon struck the right balance of being confident and realistic about her surgery that we feel comfortable (well, as comfortable as you can be under the circumstances) with him performing the surgery. The surgery should take about 4-6 hours (possibly more). He was great at really explaining things to us--so now I have a much better understanding of what has to happen and the complications that could arise. Please keep praying that none of those complications happen and that Dr. Heart Surgeon will know what to do and that he will do it well.

After spending 5 hours in Omaha at Children's, we headed home to pick up the boys and noticed that Rylan had a MASSIVE bump on his head behind his ear that was making his ear stick out funny. So, since we hadn't had enough of hospitals and doctors that day, Darrin took Rylan to the ER to figure it out. After a CT scan and various other tests, it was determined to be a bug bite that has gotten infected. So now we are on a round of antibiotics for him. It's bubble gum flavored though, so Rylan thinks it's a treat.

This week is kind of a down week--the calm before the storm of next week maybe? I'll keep everyone updated. Thank you all for your thoughts, prayers and support--I will probably requesting more next week as we head into surgery.

Next week I'll try to update as things happen so one post isn't quite so busy!

We Have the Date

2009-06-04T21:35:00.002-05:00

We finally got a surgery date today: Friday, June 26th at 6AM. We will meet with Dr. Cardio-Thoracic Surgeon on June 11th for a the Pre-Op appointment to ask all of our questions. Anna has to be at the hospital on June 25th for all the pre-op tests (x-rays, EKG, echocardiogram, blood work, and in general anything they can possibly do to poke and prod my baby). So now we wait for three more weeks and continue to be germaphobes to make sure she doesn't get sick. In some ways it's a relief to know when the surgery will be, but I think the next three weeks will have a big elephant in the room all the time. Hopefully I will just be able to relax and enjoy my super-easy baby!

In other news, we are thinking about buying a house when we move to MS--how fun is that?? I love looking at houses and I am so ready for us to have our own house!

And, the best news of the day--Darrin has all the initial writing of his dissertation done so now it's in the editing stage! We are soooo close to being totally done!

Tate for President

2009-06-01T20:51:00.002-05:00

Today Tate announced that he wants to run for President when he grows up. His platform? "To stop bull fighting and hunting." Hmm...he might run into a problem with the NRA...maybe he should be running for president of PETA instead of POTUS.

He said what?!?

2009-05-31T21:18:00.004-05:00

Tonight, Tate kept trying to distract Rylan while he was trying to say his prayer before bed. When Rylan was finished, I told Tate I was disappointed with him for not being reverent during Rylan's prayer and for encouraging Rylan to make bad choices too. Then Rylan piped in, "Yeah, Tate was acting like Satan!" At this point Darrin and I burst out laughing and the lecture was over. Ahh, kids say the darndest things!

The news

2009-05-26T23:01:00.003-05:00

We headed back to Dr. Pediatric Cardiologist today and learned more about Anna's heart--apparently her surgery will be "trickier" because of the way the tissue is and with some narrowing of some arteries, she will possibly need more heart surgeries as life goes on. Right now Anna's weight gain (or lack thereof--she was still 10 lbs. today) is holding her back from surgery. Dr. Pediatric Cardiologist will have a meeting of the minds on Monday with all the other docs/surgeons at Children's and will book the surgeons then. So the wait for a surgery date continues until Monday.

We did go get Anna's pictures taken at JCPenney today and they turned out pretty cute, you can see them here:
Click here and enter your Customer Name (CARRIE ROBERTS):https://www.smilesbywire.com/home.asp?AC=LTPP0681104523JCP

A Milestone!

2009-05-21T22:16:00.003-05:00

Today we finally hit the 10lbs mark! Yes!! Now we just have to keep gaining weight--hopefully another pound before surgery. Our cardiologist appointment is on Tuesday--I'm getting really antsy to know when Anna's surgery will be.

My friend Megan came over to take some pictures of Anna on Sunday--and they turned out super cute. You can check them out here: http://meganophotography.blogspot.com/
Thanks Megan!

In other news, Tate will be finishing his second year of preschool next week--when did he get so old?? I am really going to miss Dimensions Preschool--they are such a great program with great teachers and Tate has learned and grown so much since going there. If anyone is looking into a preschool--I highly recommend them!

Good news

2009-05-14T20:55:00.004-05:00

Just a quick post before I'm off to bed. Yesterday at the pediatrician, Anna weighed 9lbs 13oz, which still isn't a lot, but enough that the doc said we can let her sleep at night and just feed her when she wakes up on her own! So last night, she went to bed around 11:30, woke up at 4 to eat, and then didn't wake up again until about 8:30 this morning. It was SOO nice to get more than 1 1/2 hours of sleep at a time.

And, in even bigger news, Anna smiled at me for the first time today!! It was super cute, but only happened once and way to fast to get out the camera. I'll have to try again tomorrow. I did take some pictures tonight--she's just too cute! Plus, I love her little outfit for today--I think I'm starting to get into this dressing a girl thing--there are just so many cute options it's hard to chose. I'll admit that I have changed her outfit half way through the day just so I can try out some other cute clothes on her!

She was totally absorbed in watching Daddy in this one.

Here she is with Daddy--I'm not sure if it's just her, or the camera angle, but I think this picture makes her look tiny!

We are surviving

2009-05-10T23:29:00.008-05:00

Here's our update at Anna's five weeks birthday:

Anna now weighs 9lbs 10oz. which isn't nearly as much as the pediatrician wants her to be, but she is at least a full pound heavier, which is great in my book! What's really crazy to me is that at five weeks, she is just barely bigger than Tate and Rylan were when they were born--how they fit in me at that size is still mind-boggling to me.
Tate and Rylan are officially the best big brothers in the world. They are helpful, careful (for the most part), and think that anything she does is the greatest thing ever. I think Tate ooh and aahs over Anna even more than I do!
We went to the cardiologist on Tuesday and Anna still has a lot of pressure on her lungs from her heart. Dr. Martin had hoped the pressure would have gone down some by now, but since it has not, we will definitely be having her open heart surgery in June. And, because the pressure is still high, we have been told that because the pressure has remained high to be prepared for her recovery to be "longer". (What the heck does that mean?? I hate these vague terms...I know that doctors can't help them sometimes, but seriously, I need a number of days here folks, I can't handle just the word "longer"!!!) She will also be on oxygen until her surgery. Anna hates her oxygen tube or "cannula" as it's officially called--she pulls it off constantly. She is fairly coordinated for a five week old!

I have decided that Medela--the company that makes breast pumps--has got to get a new person to name their products. I mean, "Symphony" really? Sure at first glance it sounds nice, peaceful, relaxing, harmonious--but really at 3 o'clock in the morning I think it would more appropriately be named "Necessary But Evil Machine"--but perhaps that wouldn't sell as well?? I would guess they didn't ask an actually pumping mom what to call it when they named it. If they had, it would have been called something else.
Darrin finished the third chapter in his dissertation and is on to chapter four--the last chapter with data analysis. Hooray!! Hopefully he can get it finished before Anna's surgery.

That's all for tonight, I'm too exhausted for more. Here are a few new pics though:

Her hair totally has a mind of it's own! I even tried some mousse in it, but it still just stands straight up!

She sleeps great--it's just such a bummer that I still have to wake her up ever 2 1/2 to 3 hours. I think she would sleep all night if I would let her--and oh how I wish I could!!

I thought this was just a cute after-bath time picture--and rare moment without that darn cannula! I will be so glad when she doesn't need piped in oxygen anymore!

The importance of a gram

2009-04-29T22:09:00.004-05:00

I'm sure at some point during my early schooling years I had a science teacher (or maybe math?) teach me about grams, kilograms, milliliters, ounces, pounds, etc. At the time I think I "learned" the info and then moved on with my life, thinking (other than pounds on my waistline) it was good to know, but not info that would be earth-shattering. Funny how life changes your perspective and suddenly things that seem so meaningless mean everything! I have finally learned the importance of a gram--as I'm poking Anna full of every single milliliter I possible can hoping she'll gain an ounce a day, and every single gram counts. All those little milliliters/grams/ounces going up and down mean the difference between "failure to thrive" and a healthy baby...each little gram fattens her up for her upcoming open heart surgery so she can recover faster. Who knew grams were so important??? In the past three weeks I've become MUCH MUCH faster at converting milliliters to grams to kilograms to ounces to pounds...I'm sure whatever teacher it was would be proud of my new speedy mental conversions. As of today, Anna weighed 9lbs 4oz...which means she is about 2oz short of where she should be from my last pediatrician visit, but she is up an ounce from yesterday, so at least we are moving in the right direction! Here's hoping that tomorrow she is 9lbs 5oz.

UPDATE: No luck today, she is still 9lb 4oz. I guess I should explain too why her weight is so important; with her heart defect, she has two major holes in her heart, one between the top atria and one between the bottom ventricles. When her heart beats, those holes open up together to make one big hole in the center of her heart, causing all of the blood (oxygenated and non-oxygenated) to mix together. Because her heart is pumping a mixture of blood to the body instead of just oxygenated blood, her heart has to work harder to get the necessary oxygenated blood to the rest of her body. So pretty much her heart is working double time of what normally happens. Because of this, she burns calories extra fast--the simple act of eating, especially nursing, can cause her to burn more calories than she is actually taking in and her body is working against itself. Right now the goal is to fatten her up before her surgery and then once her heart is fixed, we won't have to be so concered about each gram.

Home at last!

2009-04-14T23:45:00.003-05:00

Yesterday was an eventful day for us--Anna finally got to come home! We spent most of the day jumping through the hoops to get out of the NICU--car seat check (she had to sit in her car seat for two hours without setting off the alarms), newborn care, echocardiogram, and how to use home oxygen, among other things. Thankfully we got it all done and we were able to bring her home last night around 8PM. Tate and Rylan were SO SO excited to finally get to hold their little sister. She had to come home with oxygen--which is not as bad as I thought it would be. We just have to get used to hearing some Darth-Vader-like breathing noises coming from the machine! Hopefully Anna will continue to get stronger everyday and sometime soon she will no longer need it. It is so much nicer having her home and having us all be together for the first time. Hooray!

Still in the NICU

2009-04-12T23:29:00.005-05:00

I hope everyone will forgive me for my recent lack of updates--life has been a little bit crazy this week. I know I have been horrible at returning phone calls/emails--I will try to be better! Anna is still in the NICU so right now my life is carved into 3 hour segments that revolve around her eating schedule--between running back and forth to the hospital, eating, sleeping, and trying to make sure the boys still know that they are loved--I haven't had much time for anything else. Until I can get to everyone personally, please know how much we appreciate all the of the love, support, and acts of kindness that you all have shown us. We are so grateful to have great family and friends--while this has been an incredibly stressful week, we feel so blessed and loved because of all of you. I don't know how to say thank you enough!

Anna is doing okay. She had some horrible IV difficulties on Friday afternoon and instead of putting in back in the right place, they decided to take it out and see how she would do. And we have been off the IV since then! Hooray! The bad news is that she had to go back on oxygen constantly, and she needs more O2 when she is feeding. On Friday morning the doctor said we would work towards her coming home on Monday (the 13th) in the afternoon...but that was before the IV and more O2 problems, so we'll see what the doc says tomorrow morning when he makes his rounds. The cardiologist will take a look at her heart tomorrow as well. If they both say it's okay, hopefully she could come home tomorrow with an oxygen tank and a O2 monitor. The nurses the past few days have been really helpful and have been helping us practice how to feed her in different ways so that her O2 doesn't drop too low and how to notice if she's having problems--which is SO helpful and has made us much more confident that we will be able to care for her at home.

I will try to post tomorrow about if she is home or not--definately by Tues. night I will post another update. Until then--thank you again for all your thoughts and prayers and outpouring of kindness!

Here are a few more pictuers of our little lady:

Check out the mowhawk! This is the only pic we have with her eyes open.

One of the NICU nurses played Easter bunny this morning--she made these cool sugared eggs for all of the babies in the NICU--a tradition she has been carrying on for 20+ years. We couldn't get a picture of it, but there is a little Easter scene inside the egg.

Sofia brought over this cute headband--we thought it would be perfect for her to wear on Easter! So stinkin' cute!

Here she is with Daddy!

Smiling in her sleep--dreaming about going home I'm sure!

SHE'S HERE!!

2009-04-07T18:32:00.010-05:00

This is Darrin making my inaugural post on this blog. Our daughter was born at 2:15p.m. on April 6th. She was 8 lbs, 10 oz and 20.5 in. long. We have decided to name her Anna Jeanette Roberts. Delivery went well, and Carrie is recovering nicely. Anna's had a bit of trouble maintaining her oxygen and glucose levels, so she has been in the NICU for the past day. Hopefully these things will stabilize in the next few days and she can come home soon. We wanted to post a few pictures for you to see. The first one shows Anna on the scale wondering what the heck just happened to her...

...relaxing under the warmer in the NICU

Check out all the hair!

Mama looking completely rested!

Proud big brothers wearing their St. E's Big Brother t-shirts.

Musings of a 40-Weeks Pregnant Woman

2009-04-04T23:25:00.004-05:00

1. I am still pregnant. My due date is tomorrow, but I want to give our little daughter a few more days to make an appearance on her own. My patience with that will end on Thursday when I have an induction scheduled.

2. Has anyone else noticed that Nebraska seriously has the craziest weather? Only in Nebraska would you be under a severe weather advisory and have a winter weather advisory at the same time. I mean really, where else gets tornadoes AND snow all at once?? My patience with winter is also gone--too bad I can't schedule spring to come!

3. I have given up my house being clean for more than 12 hours. If you come to visit me, please know that at one point, my house was tidy--even though at the moment it might look like it got hit with one of those crazy tornadoes mentioned in #2.

4. Tate is really a child in his own class--tonight he turned down watching "A Bug's Life" in favor of a BYU-TV special on family history and missionary work done in Hawaii. Seriously?? Sometimes I have to remind myself he's only four years old.

5. Back in November, we bought a Honda Odyssey--our Mazda wouldn't have fit three car seats across the back. For most of my life I have mocked mini-vans...but now that I AM a mini-van mom--I love it! I have no idea why I thought mini-vans were so uncool because honestly, I have never had another vehicle that reminds me how much I love it every time I drive it. There are still days that I don't feel like I am old enough to be a mini-van mom with three kids, but if you are going to have kids, a mini-van is definitely the way to go. By the way, my husband is the best for letting us get the one that I wanted.

6. I have recently read a few personal story books on Down syndrome--one is called "Gifts" and the other is "Road Map to Holland". I would recommend them to anyone, although if I had read them sometime before our diagnosis, they would not have had the same effect on me as they do now.

7. I was recently released as the Young Women's President in our ward after two years--which was completely bittersweet. It was time for me to be released and it's nice to have a little more down time, but so hard to let go of seeing my girls every week. They are so great to work with--I hope that they will keep me up to date what goes on in their lives. I love them to pieces and feel very privileged to have spent so much time with them and to have learned from them. They have each touched my life in a way that will never be forgotten.

8. Did I mention that I am STILL pregnant???

Decision made!

2009-03-10T22:17:00.002-05:00

After much deliberation, we have decided to accept the position at Mississippi State University in Starkville, Mississippi!!! It is a huge relief to have a fabulous job set up so far ahead of graduation. While I've never been to the South, I'm excited for us to start this new adventure--and I'm already imagining Tate and Rylan with cute little southern drawls. Hooray!!

Possiblities

2009-02-22T20:39:00.002-06:00

Someone shared this story with me--while I'm not a fabulous writer myself (especially about anything personal!) I really appreciate when people write in a way and about a subject that inspires me to think deeper, learn more, work harder, be better. While I promise not all of my posts will be about Down syndrome, I hope that as I share some of the things that I learn, we can all rid ourselves of confining stereotypes and create a world full of possiblities and learn to view the people around us by their divine nature and potential.

_________________________________________________
A Story about My Two Daughters
How to Live in the World of Possibility
By Candee Basford
My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford
*Candee Basford is an author, artist, facilitator and independent consultant. She is president of Ohio TASH and active in capacity building approaches. She holds a Masters degree in adult education. Learn more about her and her daughter Katie here .
**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .
***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.

Baby #3 and The Unexpected

2009-01-26T22:17:00.002-06:00

I'm way behind in posting this and some of you know and some of you don't that we are expecting baby #3 (a little girl!) on April 5th. We, of course, have known for a long, long time but I don't usually tell people that I'm expecting until after I know the gender or until people look at me and realize I'm wearing maternity clothes--which I have been wearing for several weeks now, but some people STILL don't know (I guess they just think I'm getting really fat?!?) so I thought I'd post about it. I'm a little at a loss as to what to do with a girl and completely overwhelmed at all the accessories that come with girls--you'd think that, being a girl myself, I would know what to do, but after having two boys, I'm not sure that I know what to get when I walk into the pink aisle!

Along with the newness of having a girl, we also found out that our daughter has Down syndrome and a congenital heart defect (called AV canal defect, or AVSD) that will require open heart surgery sometime this summer. While the news came as quite a shock, we are excited about welcoming this sweet little daughter of God into our family and no sympathy is needed. We have been very blessed to have children sent to our family and feel that our daughter will also be a blessing to us.

Since receiving this news, we've realized that most people don't know what to say when we tell them or that people say things that they don't realize are offensive. While we don't want to be the politically correct police, we do plan on being an advocate for our daughter. So here are a few things that people should know:

Using the word retarded for anything you don't like is extremely offensive. If you think something or someone is doing something unpleasant, please use a different word. Retarded actually means "slow" not stupid or rediculous.
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Please use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". It is also inappropriate to say "a person is Down syndrome"...they are a person, not a syndrome.
A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

One other story that is well known among parents that have children with disabilities and which describes the feelings really well, is called "Welcome to Holland" by Emily Perl Kingsley. We thought we'd add that here to give some insight.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.

The Job Hunt

2008-12-11T21:54:00.002-06:00

On Sunday, Darrin will fly to Starkville, Mississippi (Mississippi State University) for a job interview, and in January he'll fly to Las Cruces, New Mexico (New Mexio State University) and to Havre, Montana (Montana State University) for other interviews. We are also looking at possible jobs in North Platte, NE (University of Nebraska), one at Washington State (in Prosser, WA), one at Kentucky State (in Princeton, KY), Michigan State (in East Lansing, MI), and one with Texas A&M (in San Angelo, TX). Unfortunately, with the economy going down the tubes, some of the jobs that he'd been told about are "on hold" until the state figures out their budget. Cross your fingers that we'll be able to find something good for our family!

I'm starting a poll--where would you go if you had to choose among the places listed?

He Passed!!

2008-11-12T15:00:00.003-06:00

I'm a little late in posting this, but as all of you have noticed, my blog is seriously behind anyway, so what's a week late??

I am proud to announce that Darrin passed his comprehensive exams for his PhD. Hooray!!! For those of you who don't know--comps for Darrin involve 5 written tests--one from each member of his advisory committee. And these tests can be BRUTAL--they literally can ask you anything and you are expected to come up with the answer. For example, when another graduate student was taking his comps, one of Darrin's committe members received a question from a farmer that he didn't know and couldn't find the answer to, so he just used that question as this other student's exam question! Crazy stuff. And, if that's not enough, once you have completed the written tests, you take an Oral exam--which is 3 hours of your advisory committee asking you MORE questions about whatever they want. Not an easy process! Darrin passed with flying colors and all of his advisors said that he did great. I am so proud of my husband and all of the hard work and effort he puts into doing well in school and providing for our family. I love the great example he sets for our children by working hard and perservering through difficult situations.

Now all that's left to do in graduate school is finish up coursework, finish analyzing research data, write a dissertation, get 5 more articles in the works or published, apply for/interview and land a job, write grant proposals/get funding, and defend a dissertation...

Tate's Big Accomplishment

2008-10-03T14:57:00.002-05:00

Do you ever have those moments where you look at your kids and think: When did they grow up so much??

Tate was so proud of himself today because he made lunch all by himself. Granted, it was just PBJ's, but he got out the placemats, plates, bread, and jelly (I helped with the peanut butter b/c it was too high even with a chair) then made sandwiches for himself and Rylan and set them on the table. He even cleaned up his mess afterward. (Apparently getting the peanut butter all the way to the edge of the bread was of upmost importance--so the plate and counter were also peanut buttered.)

While this seems like such a little thing to the grown-ups of the world, to him (and me) this is a major step in his process of growing up. It was one of those moments as a mom where I'm so proud of him for being responsible and able to handle it COMPLETELY by himself, and at the same time I just want to sit him in a high chair and feed him baby food again.

General Conference

2008-10-01T14:29:00.003-05:00

As a member of The Church of Jesus Christ of Latter-day Saints, I really really look forward to the first weekend in October and the first weekend in April. During those special weekends, I get to listen to the Prophet and the apostles for two days at General Conference. After conference weekend, I am always uplifted and my faith is strengthened. General Conference has never failed to answer my questions about the Gospel, give me new direction for what I need to do in my life, and it just simply make me happier. I attended the General Relief Society broadcast last Saturday and it was exactly what I needed to hear. I am so thankful that the Church is run by inspired leaders who seek direction from God to guide the people on the earth. What a blessing it is to have prophets and apostles today to lead and guide us. Only a few more days until General Conference!

P.S. My friend sent me this link for fun things for kids to do during General Conference--we used a packet like this last April and Tate and Rylan LOVED it.
General Conference Packet