Poor Luke. . .

His self-esteem really suffers.

Me: So Luke, how was school today? Was Parker back? (his best little bud who has been out sick)

Luke: He was back. And today, the two of us, we were funnier than EVER! We were so funny that we should have been put in jail. THAT is how funny we were. We were really, really funny.
(as he cackled to himself, evidently re-living their comedic genious.)

The State of our Home

I wandered into our guest room/office today, which has served as the sleeping quarters for the parent who loses the “I feel worse than you do” battle (the winner gets our bedroom). I noticed this flower. I don’t know how long it has been this way. A good while I suspect. I thought it the perfect reflection of how our family has felt the last ten days. And the fact that it’s sitting there, in rancid water, all droopy and dead with dust covering the once perky orange petals reflects the level of neglect our home has experienced.

It started ten days ago with James telling me he didn’t "feel quite right.” Now that is never really good is it, that ‘not right’ feeling? So, while feeling for James, but also receiving a quick flash of what his ‘not right’ feeling might mean for the rest of us I sent him to our room with instructions to get in bed and not leave. This was a Saturday. Sure enough aches, high fever, weakness, headaches, severe congestion all reared its ugly head sometime that night. Poor guy. He tried to find a way out of preaching Sunday but when you are the planting pastor that is not necessarily easy. So he forced a shower and made it to church, preached and returned to bed. He did not get out until Tuesday.

Now, I was feeling pretty good that no one else was showing any evidence of the crud. My efforts were paying off. Keeping James quarantined, dashing in and out of the room with his food and medicine and washing up after each visit, spraying Lysol on anything James had previously touched. . . you know, typical ocd behavior. On Tuesday when James found the energy to take a shower I decided to change the sheets for him. Maybe that’s where I went wrong. Tuesday night, I lay on the couch, pleased that after three full days of caring for everyone I could relax and watch the American Idol wannabe’s take the stage. And then it happened. Out of nowhere I started having that ‘not right’ feeling. Oh noooo! This can’t happen. James is far from well and if I get what he has who is going to keep up with our rugrats? Sure enough, within an hour I felt like spit. And to top it off, because my body is just good to me this way, I developed a migraine.

James and I tag teamed on Wednesday. The kids still seemed okay, thank God for small favors. Then Thursday morning around 4.00am I hear the screams. It’s Luke I realize in my muddled state of mind. I dash to his room thinking he was having a nightmare. As I am holding him trying to calm him down I say, “it’s okay Luke, you were just having a nightmare.” He pulls back from me with a look on his face that seemed to confirm this as he wailed in complete horror, “I think I have what you guys have!” Ohhh, he’s sick. Not wanting to disturb Wil we dash out of the room, a vain attempt, but hey, you can’t blame a girl for trying. I bring him into my room where through his tears he is still talking, “I’m cold like dad.” Neither of us got any more sleep that morning. And I am reminded once again that Luke is sooo not subtle about anything.

James got Wil up later that morning while I stayed in bed (for the next three days!). I heard the bath running so I knew that wasn’t good. In our house, running a bath in the morning means Wil has a pretty good mess in his pj’s. Sure enough diarrhea set in for him. And continues to this day.
I will spare you the details of the following days but will tell you that by Sunday, in my desperation, I went to an urgent care center where I was diagnosed with Strep. Yay, I got drugs! Wil was given the same news Monday and James was told he has a massive sinus infection. So, we are now, on Tuesday, still weak but have beloved antibiotics pumping through our veins so hope has entered the house!

As is evidenced by the playfulness of the boys.
And now I stand staring at the PILES of laundry and the disaster that is our house. I think it’s going to take another week to recover. But we are thankful to be on the mend and are thinking about going into seclusion until “sick” season has passed!

In response to my last post. . .

the following was left in my comments section. So I am passing it along to you. Thanks KathyR.

another thing that people can do to bring awareness to the incredible bias that some doctors have against unborn babies with Down syndrome is to sign the petition here. The plan is that people who sign it can then print it out on March 20th and send it to their representatives in Congress on March 21, which is World Down Syndrome Awareness Day (3/21) and ask them to support the Brownback-Kennedy Prenatally and Postnatally Diagnosed Condition Awareness Act.

Take a look at the link, read about the petition, and if you feel led please send it in. I live with a number of fears for Wil - some legitimate and some not. One is that faces like his will become harder to find, and that one day he will ask me why.

Now, on a much lighter note. Come back Tuesday and I will tell you how we managed last week with both James and I knocked out with the flu and strep throat while trying to care for Luke and Wil (both sick at various points) and Timothy (not sick but very unhappy that the rest of us weren't so playful). Right now I must climb back into my germy bed because this little bit of typing has worn me out!

A ways to go. . .

When I consider what is, or rather is not, available to people with Down syndrome and their families in some countries - particularly Eastern Europe - I realize how fortunate we are. We have access to good health care, we have early intervention for our kids which gives them a great advantage in reaching their potential, we have schools with educators trained specifically in working with kids that have special needs. We are fortunate.

Yet there are so many people out there - educated men and women, many in the medical and academic world - who believe that kids with down syndrome do not have a place in this world. Professor Albert Harris from UNC - Chapel Hill is one of those people believing that women have a moral obligation to test for and then terminate a child with Trisomy 21. This is a personal affront to families that have children with Down syndrome. This is what we are fighting against. This is the mindset of the professionals that are pushing for early testing and then scaring the life out of parents-to-be when they do get a positive diagnosis for Ds. It is profoundly irresponsible. This is not just about the ethics of abortion. These professionals are not giving an accurate picture of Down syndrome. How can those practicing medicine and teaching in our universities, with all the incredible advancements in medicine in this country, have such an antiquated understanding of Down syndrome?

Dr. Harris' comments in class have created an uproar. I, personally, am grateful to the student who spoke up in his class. We need more Lara Frame's. The National Down Syndrome Congress also spoke up when Dr. Harris' opinion was brought to their attention. Following is their statement:

Atlanta, GA -- February 22, 2008 -- According to a Raleigh News and Observer report and articles in a number of other journals, biology professor Albert Harris of the University of North Carolina, Chapel Hill, has stated, "In my opinion, the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does," While Professor Harris qualified his statement as his "opinion" the National Down Syndrome Congress (NDSC) finds the professor has violated basic academic standards by expressing an opinion based on personal, anecdotal experience in a classroom setting. Reports suggest that Harris did so to spark discussion and debate. The NDSC would welcome that; however, we find Harris adds nothing to a debate which has been ongoing for sometime. He cites the fact that his opinion is based on the experience of one acquaintance whose life was, according to him, "ruined' by a child with Down syndrome. Instead of basing his opinion on facts, his own research or a clear understanding of the key points underpinning the debate, Harris has inserted his personal and quite obviously prejudicial opinion into an academic forum. In doing so, he has abused his responsibility to his students, colleagues and university. He has also inflicted unnecessary pain on people with Down syndrome and their families. Down syndrome is the most common naturally occurring cause of developmental delay. Occurring once in every 800 to 1000 live births, the syndrome affects approximately 350,000 Americans. Down syndrome impacts people across an extremely wide range, however it is rare for it to be, in fact, ruinous by any definition. The contrary is more often the case. NDSC Executive Director David Tolleson notes, “We are in constant contact with a large, vigorous national and international community of people with Down syndrome, their families and the professionals who support them. Additionally, published academic studies have found that most people with a family member with Down syndrome consider the experience to be a positive one.” Far from ruining lives, our families consistently report that their sons, daughters or siblings with Down syndrome enhance their lives and bring them great joy. A quick scan of the internet will produce many examples of people with Down syndrome who are embraced and valued by their families and communities. In the post secondary world, people with Down syndrome increasingly attend college and take their places as loyal, productive and valued employees. We question how any of that can be termed "ruinous."We therefore ask Professor Harris to retract his statement. In doing so, we also request that the professor make an appropriate apology to his students, explain clearly that his statement was a personal opinion and has no scientific basis and make every effort to convey to them current, accurate facts regarding Down syndrome. Should Professor Harris decline to do so, we call upon the University of North Carolina to investigate this incident and take appropriate disciplinary action.

Down Syndrome Belongs

This speaks for itself.

Black Belt

Just want to make sure you have your quoto of feel good stories today.

This one is out of a Miami, reported by a local television station. What is noteworthy about this to me is not just that Andrew accomplished something difficult but rather that someone, his instructor namely, allowed him to do so by giving him the time and space he needed. He was patient. People with Down syndrome typically need more time to assimilate information and make the necessary connections to accomplish the things they are interested in. In our society where we tend to expect everyone to learn the same way that can be tough. I hope we can surround Wil with people, like Andrew's instructor, that will provide understanding, patience and opportunity.

Getting Married

This was shared over on Narrow Ridge yesterday. Thought you might enjoy it too.

Well, there was access to this story earlier at the StarTribune out of Minneapolis but now it is requiring a password so I found another story on the same couple. It does not give the full picture of their relationship like the Tribune did but I think you will appreciate it all the same.

Sprucing Things Up

Don't go, you are in the right place! I have decided to spruce things up around here by giving the ole' blogger a little mid-winters face lift. James tells me this is a little "cutesy," something I usually stear clear of, but I am okay with that here. With the mess, mud, grime, and gas that comes with raising three boys I decided I wanted something bright and sunshiney on my little spot on the internet.

My new look, by the way, is compliments of Lynn over at The Burp Rag Chronicles. I "met" Lynn nearly four years ago when I stumbled onto a board of women trying to figure out infertility issues. I had been diagnosed with secondary infertility due to a luteal phase defect. Okay too much information I know. Lynn was one of the women in this chat group and now, four years later, I continue to keep up with her and two other women from the original group. Never met any of them though they have been a real encouragement to me through the years. So Lynn, being the kind person that she is, and knowing my illiteracy when it comes to anything computer, offered to redo my blog. Lynn is very good with computer codes and whatnot. I don't even know what 'html' means. But I want to learn, really I do. It is on my list of things to accomplish right after photography, sewing, master gardening, and scuba diving. Well maybe not scuba diving, it looks cool but frankly I would rather be in the mountains. But for now my time is filled with changing diapers, wiping noses, washing clothes, and preventing devastating injuries so I am grateful to Lynn for stepping in and making my blog less boring. Thank you friend!

And speaking of sprucing things up. . . Maybe it was the unseasonably warm weather today or maybe I just got fed up with all the things on my "to do" list but whatever it was it got us moving on a few things around the house so I am not complaining. First can I just say I am caught up on ironing. That hasn't happened in, oh, five months or so.
Then we went outside.
James assisted Luke in cleaning the interior of my mom-van. Luke was quite proud of his accomplishment and I have not seen the inside of my car this clean since we bought it. We'll see how long it can stay that way.

While they were working on that I was bordering the bed in front of our house with some big rocks.
I like these rocks because they come from the creek that runs through my parents property. We have been collecting them since we moved into our new home and have bordered two full beds with them in the front with a couple more to go. It has been a slow process but I think we will like the end result. It is different, a bit more rustic, and we get to pick out each one which is kinda cool. We have run into a problem though. We have had no trouble excavating these rocks because the creekbed has been dry as a bone since last summer due to the drought we have been in. But now. . . the creek runneth over from all the recent rain we have had. Good for our state and all the farmers around here. Bummer for my incomplete borders.

Later on we went over to my parents where James assisted Papa in putting the framework up on Luke's treehouse.

Luke and Nonnie test out the stability of the treehouse. Luke appears very official here with his hand on his hip. He is probably lecturing Nonnie on the process of making lumber from trees.

Timothy did some exploring while the big guys worked. Shoveling is hard work too ya know.

uhhh, what's going on here? I am just going to take it slow and steady, keeping my nose to the ground, and hope these beasts don't see me.

Wil also enjoyed the great outdoors while signing his favorite song. Itsy Bitsy Spider. Here in this photo the spider is climbing the water spout.
And the exciting part - out comes the sun and dries up all the rain. Yaayyyyy!!! Awww, shucks. Now I'm embarrassed.

Luke's musings

Conversations with Luke are all over the map.

Sometimes there is no conversing involved, just declarations from Luke, like this morning when he announced. . . "I am made with a faulty molecule and may blow up at any moment."

Uhhh, okay, thanks for the warning.

And on the way home from school, when we have some of our most profound conversations, he stated the following. . . "I really don't like girls at all. But that's okay, daddy didn't either when he was my age. I figure when I am a grown up and have to marry one I will learn to like them then."

That's a good strategy, Luke.

And later while returning from a trip to town Luke was thinking out loud. . . "The letter 'c' has the ka ka ka sound right? (not really needing or waiting for an answer) So why isn't Luke spelled L-u-c-e?"

Letters have different sounds depending on where they are placed in a word. A 'c' in your name would make the 's' sound. (I am not even sure if that is true now that I think about it.)


Just does, Luke (not feeling up to explaining all the rules of spelling and such - and, hmmm, not really knowing all the rules to spelling and such. I'm a perfect example of why some parents just shouldn't homeschool.)

"Well then how am I supposed to know when to use the right letter?"

You'll figure it out. (How's that for stellar parenting!?)

Why I Blog

Because I don’t like to scrapbook. Just kidding. Well, sort of. I do not like to scrapbook but that is not the only reason I blog. More on that later.

Friends who know what my daily/weekly routine is like often ask how I find time to blog and, furthermore, why I do it in the first place. After all it takes time that could be directed toward more practical and necessary tasks like doing laundry, ironing, scrubbing my endlessly dirty floors and floorboards, doing laundry, painting the garage, preparing a weeks worth of meals for my hungry family, and did I mention doing laundry. So I have been thinking about that question. Why do I blog?

I have never been one to put myself ‘out there’ so to speak. I suppose my inner circle would consider me a somewhat vulnerable person, an open book of sorts, sometimes forward and bold. But those who know me more casually might consider me shy or even withdrawn. I am off the charts introverted and am relatively private, so unless I am super comfortable with others and feel understood by them I pretty much keep to myself. There are certainly exceptions to this, like going head to head with a provider over Wil’s care or services. Or “pushing back,” in any arena, when I feel a service has been less than adequate. An old friend once joked that I had quite the “sense of justice.” I dunno. I am a mixed bag I guess. Maybe that is why I like blogging. It really satisfies that very introverted part of me by allowing me the space to sit down alone and “think out loud” while, at the same time, giving me the platform to write about one of the things I am most passionate about, my family, and in that, parenting a child with Down syndrome.

I use the term “write” lightly because I am not a writer. There are so many great writers in the blogoshpere, like Ree at Confessions of a Pioneer Woman, and Jennifer at Pinwheels, and Tom over at Narrow Ridge. These folks are really good writers, they have some good stuff to say, they are articulate and thoughtful and actually know proper sentence structure. My sentence structure stinks and I write like I talk which is not always clear.

But I put my thoughts and the life of my family to “paper” anyway because I feel compelled to do so. It is a bit narcissistic in many ways – as if anyone, other than some extended family of course, gives a rip about what is going on in our world. My kids have brought this out in me though. They have, by the very nature of who they are and how they impact me, challenged me to talk. To break some myths and tell the truth, as I see it, about parenting, raising a child with special needs, having a house full of boys, and living a less than perfect life as a Christian who desperately needs God’s grace to get through every single day knowing, as one friend with a medically needy child said to me, “there is another one pressing hotly on it’s heels.”

And the scrapbooking thing? I really don’t like it. Never have, never will. Sorry Lark. :) I actually have scrapbooking paraphernalia stored away somewhere with my kids baby photos scattered at the bottom of the box. I still have not completed the photo book of my oldest child. If it matters I do live everyday with a moderate amount of guilt over this. However, as I have thought about why I blog I have come to realize why I don’t like scrapbooking. (this is in no way a judgement on any of you scrapbookers out there, I know there are some really great and “real” albums being put together, it’s just not my thing.) My general feeling concerning scrapbooks is that they tell a story that leaves out the real, tough, and messy nuggets of vacation, day-to-day life, births, parties, what-have-you. The best pictures are chosen for the page with cutesy quotations and stories to go along. And me, well I find the stuff that happens in between more interesting, or at least a better picture of real life with three small children. Like the screaming that takes place for 70% of the road trip, the rotavirus that hits after you set out on a day trip to the mountains, having to walk the parking lot of a restaurant - because one baby will not sit through the meal – while hubby crams his food down, pays the bill and gathers the other two discontent kids, the meltdowns over not being able to get on certain rides at an amusement park (can anyone say sensory overload?), the incredible difficulty of trying to get little ones to sleep in unfamiliar environments when they are already overtired. These are the things that generally don’t go in the photo book but make up a pretty good chunk of life with small kids. So to me a scrapbook, with all it’s pretty borders, cutouts, framed pictures and cute captions is like a pretty tapestry. But our life, well, it is more like the underside of that pretty tapestry. Not so pretty, not so perfect, and not so organized. That is why I like blogging – it is a great way to document all of those crazy, mind-numbing parenting moments. And to do so without craft scissors, two-sided tape, a box of pictures and a blank page begging for a creative touch.

Blogging is also a great way to document all of the sweet unexpected moments and conversations. I find that blogging makes me pay attention to the nuances of every day more than I once did. There are many things that take place in our home that would have once either rolled off my back or caused me to go stick my head in a very deep hole. But now I think, “I need to note this. Or write about that. Or tell this story.” Hopefully as my boys age and inevitably stumble across this blog they will not go seek out that hole in which to stick their heads.

So, that’s why I blog. Aren’t you glad I got that all sorted out for you? Now I really have to go do some laundry.

Speaking of advocates. . .

If you have ever watched Scrubs you are familiar with the wise-cracking, irreverant Dr. Cox. The actors name is John McGinley and he has a 10 year old son with Down syndrome. Someone passed this article along to me about one of his defining moments as a dad to his son, Max.

The Transition Begins

Wil was born two months early. During his month in NICU we received his diagnosis and found out heart surgery was impending. We were also introduced to the concept of early intervention for special needs children. This service is offered by the state to children who are or will be "delayed." It includes physical therapy, occupational therapy, speech therapy and in some cases, as in our state, a weekly visit with an early interventionist. The first three years of therapy are received in home or clinic and then the child "transitions" to the school system where he is supposed to receive his services through the district. Wil began receiving therapy when he was six weeks old - two weeks after leaving NICU - after a little bit of pushing on our end. (they didn't want him to start until he was six weeks beyond his adjusted age, i.e. due date, but we insisted that because he was here and not actually negative 4 weeks old he should be seen asap.) He has been receiving therapy ever since with only two significant breaks; the first break was at five months old for his heart surgery and the second was one year ago when we moved from the Sunshine State to the Palmetto State. (This is M, Wil's OT. Wil loves working with him)

We have become very comfortable with Wil's therapy routine, his progress and abilities, and his obvious delays. When I look at Wil I see him in the context of our family which includes a little brother who is the same size and interested in many of the same things. Our context also includes our church family where Wil stays in the nursery since he is not yet walking. So in my eyes he just fits in. Now, I am aware that he is 12 to 18 months older than most of these kids but I just don't think about it often. He is who he is and I have always been okay with that.

However, today, reality kicked me in the knee's. Wil had his third of six transition meetings/evaluations. This morning we saw the psychiatrist. Wil was placed in the designated pre-school chair (after failing to follow instructions and climb in it himself) and sat attentively at the table before the evaluator. I sat in the corner behind him. The evaluation involved giving Wil one task after another to see how well he did. With each passing test the lump in my throat grew larger and the burning in my nostrils intensified. Anyone could see that he was not doing well but it was really emphasized by the phsychiatrists repeated comment of "oh he is just sooo cute," as if that was going to put a huge grin on my face and cause me to brush off what was becoming painfully clear. Wil is really delayed. After Wil's test I was asked many questions about his abilities at home. Most of my answers went something like this, "ummm, no he's not really doing much of that" or "well, occasionally he does x, y, or z but not consistently."

During this hour long session some of the grief that occasionally sneaks in was banging on my heart. I couldn't ignore it or busy myself with something else or pretend that Wil was exactly where he needs to be. I couldn't escape the 7 x 7 room where I was watching him do all the wrong things on every single test that was put before him. I also couldn't escape Wil's enthusiasm. Even though he put the circle in the square he clapped and yelled "aayyyyy" after he did it. Even though he couldn't pull the red block through the opening in the glass box he applauded himself for lifting the box up to retrieve the prize. Even though he couldn't put the peg in the hole he cheered when he got close. I couldn't escape the fact that Wil tries hard and he delights in the process. I couldn't escape the fact that as hard as our reality occasionally feels Wil continues to teach me simple yet profound lessons about what is most important and valuable in this short life we have been given. It is something I need to be reminded of often.

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