The Day We Let Our Son Live

I gazed in wonder at the blurry form on the screen. “Hi, Baby,” I whispered. The image of our baby was much clearer on the level two ultrasound. The technician rolled the ultrasound wand over my growing abdomen, now slippery with gel, and I marveled as I watched our son squirm a bit and suck his thumb. A new life forming within me.

Hoping for the Best
Al was supposed to be with me at the doctor’s office, but was running late after discovering his car had a flat tire. I hoped he would arrive in time to see the clearer images of our son. Our OB/GYN referred us for a level two ultrasound after our noticing choroid plexus cysts on our baby’s brain during the standard 20-week ultrasound. I was anxious about what the maternal health specialist might find. We knew a couple whose ultrasound also showed choroids plexus cysts, but whose baby was perfectly fine when he was born. We had spent the past week praying for our baby and hoping for the best.

Al walked into the exam room as the technician was finishing up. She hadn’t said much while she worked and explained that the doctor would be in to take a look for himself and to explain what he found. Al and I chatted quietly while we waited. I was relieved that Al had made it before the doctor came in. Little did I know how much I would need him.


“Something is Very Wrong”
The doctor came in and began his exam. I was delighted at the chance to see more images of our baby. But my world was shaken when the doctor finally began explaining what he saw. “Something is very wrong with this baby.”

He continued to roll the wand over my tummy as he pointed to various spots on the screen and began listing all of the “abnormalities” he found. Larger than usual nuchal folds…clenched fists…possible club feet…something wrong with the liver…enlarged ventricles in the brain, no stomach (but maybe he just couldn’t see it yet because the baby was so small). My tears flowed as his list grew longer. My delight at the new life within me turned to icy fear and I clutched Al’s hand tightly.

The doctor suspected a chromosomal problem, possibly Trisomy 13 or 18, birth defects caused by an extra 13th or 18th chromosome. The doctor explained that both of these conditions are generally “incompatible with life.” We were told that if our baby was born alive, he was likely to die within a day. If we were lucky, he might survive for 6 to 12 months. We wondered if we should begin preparing for death instead of life.

Frightened and uncertain of our baby’s future, we agreed to an amniocentesis. We would not, we thought, consider aborting our child, but we wanted to know what to expect. And this situation wasn’t really covered in What to Expect When You’re Expecting. Al held my hand while the doctor extracted amniotic fluid from my womb using a long needle. The procedure was over quickly and the baby seemed to be okay, that is, if you didn’t count all of his “abnormalities.” The doctor explained that it would take around two weeks to receive the results and mentioned when we would need to make a decision regarding termination.

Thinking the unthinkable
Once we were home I went to our bedroom and wept. I left Al to explain what was wrong to his mom, who was watching our three-year old for us that day. I was worried she would blame me.
Later that evening, after we’d both had some time to process the news, Al and I talked. I felt lost. This scenario didn’t fit any of my plans and I had no idea how to respond. We talked about funerals, and, if the baby survived, what life would be like for us and for him.
“What should we do?” I asked. “I never thought I would even think this, but do you think it would be more compassionate to terminate the pregnancy?” I felt horrible even thinking about abortion, but given what the doctor told us I honestly wondered which was more the more loving thing to do; save him from the pain and difficulties he would likely experience if he survived or allow him to live.

After a moment of silence Al responded, “I think we should do no harm.” Relieved, I quietly agreed. From that moment on we began to prepare ourselves to welcome our son into this world, no matter what that looked like. The most important day in my life is the day we decided to let our son live.

The Diagnosis
We chose a name and began to refer to our son as Elijah instead of “the baby.” It helped us to remember that he was “real.” Even if he didn’t survive the pregnancy, he was alive now and we would enjoy him as long as we could.

A couple of weeks later, shortly before Christmas, the doctor called with the results of the amniocentesis. Elijah was diagnosed with Trisomy 21, more commonly known as Down syndrome, a condition caused by an extra 21st chromosome. We had done some research. We knew that a diagnosis of Down syndrome meant that Elijah would have difficulty learning. We knew that he would experience developmental delays, such as walking and talking later than typical children. We also knew that he was more likely to have a congenital heart defect and other medical problems.

The doctor asked if we had made a decision regarding termination. I was surprised. “What? Why would we terminate? It’s only Down syndrome!” I was actually relieved. Elijah would most likely survive. I had no idea at the time that close to 90% of people who receive a pre-natal diagnosis of Down syndrome decide to terminate their pregnancy.

A New Life
Although we were glad Elijah would most likely live, we still grieved our lost hopes for a “perfect” baby. I vacillated between mourning, “This is not what I planned for my life!” and making new plans. I spent many evenings crying (pregnancy hormones were bad enough, but a difficult diagnosis made things even worse!). We read whatever books we could find about Down syndrome. We contacted the National Association for Down syndrome (NADS) and were paired with a support family. I was put on partial bed rest and spent a lot of time at the maternal health specialist’s office for appointments and non-stress tests.

On April 8, 37 weeks into the pregnancy, I went to see the maternal health specialist for a standard appointment. I told him I was little worried because Elijah wasn’t moving very often. Since Elijah was technically full-term, the doctor decided we should deliver him via C-section. I was promptly taken to a hospital room where I called Al and told him that we were having a baby…today!

A few hours later Al held newborn Elijah Timothy Hsu up for me to see. He was small, just four pounds seven ounces, and looked like a little old man. I had a few moments to gaze at him before the nurses took him to the NICU (Neonatal Intensive Care Unit). After several difficult weeks, Elijah was released from the hospital and we took him home.

A New Normal
Other than having Down syndrome, most of the other “abnormalities” the doctor listed were not present. Today Elijah is a happy and healthy three-year old. He loves preschool and is learning to read. He communicates using a combination of sign language and spoken words. He enjoys giving hugs, dancing and babbling in front of a mirror. His smile lights up a room and his laugh is contagious. He and his six-year old brother, Josiah, play and fight together like any siblings. He also gets into trouble, like any three-year old might. He often throws his food off the table when he’s finished eating, and once he colored on our white furniture with a purple marker.
What has surprised me most about Elijah is how he is more “normal” than he is different. He has developmental delays and it sometimes takes him longer to learn new skills, but for the most part he’s just a normal kid doing normal kid stuff. Elijah’s first year was sometimes difficult and overwhelming, but life with Elijah has settled into its own routine. Taking care of him is not all that different than taking care of our typical child. And loving Elijah comes just as naturally to me as loving Josiah.

I can’t imagine life without Elijah anymore. He brings us so much joy. I’m so glad he’s alive and that he’s a part of our family. And I look forward to the day when Elijah can tell me about the most important day of his life.

Elijah Pray!

I was getting ready to eat a nice breakfast of pancakes with Elijah (our favorite!) when Elijah looked at me and said, "Elijah pray!"

So I said a simple prayer leaving time for Elijah to repeat each word after me. "Dear...God...Thank you...for...pancakes...Amen!" Elijah repeated each word, emphasizing the amen. I smiled, happy with Elijah's spiritual development, and picked up my fork.

"Mommy pray!"

I looked up and Elijah was signing that he wanted me to pray now. So I said a slightly longer prayer and got ready to eat.

"Elijah pray!" I looked up and Elijah had his hands folded ready for yet another prayer. We said three or more prayers together before I finally said, "All done prayers, Elijah. My pancakes are getting cold!"

This has become a common theme at mealtime. Elijah is quick to remind us to pray and eager to repeat the words (and complete prayers) as often as we allow him. This morning I was eating my pancakes (I told you its our favorite breakfast) when I heard Elijah babbling. I glanced up and he had his hands folded, clearly chatting away with God. I couldn't understand many of his words, but I have no doubt that God understood exactly what Elijah was saying to him.

To Sleep or Not to Sleep

As I mentioned earlier, Elijah has outgrown his crib. We quickly converted his crib to a toddler bed and surrounded it with pillows until he learned how to stay in bed without falling out. Three months later he is still falling out of bed multiple times each night. Each time he falls out of bed, we get up and gently settle him back into bed.

Tired of, well, being tired all of the time, Al and decided to buy a bunk bed. We thought between having a larger bed and adding a safety rail we could get Elijah to stay in bed and that we might actually get some full nights of sleep again. So last Sunday we went to IKEA and found a reasonably priced bunk bed and brought it home. It was bedtime when we got home so we left the boxed bed downstairs. Al left Monday morning for a trip and I thought I would wait until he got home to put the bed together.

On Monday I was excited about the new bed and had the day off anyway, so I thought I would start getting things ready for the new bed while Al was gone. I started by rearranging the toy room so we could move Josiah's old bed into it. Then I decided I may was well move Josiah's old bed while I was at it. Then, since Elijah has been sleeping on his crib mattress on the floor anyway, I decided to take apart his crib and put into storage. Once I finished that I realized it was only mid-afternoon.

To make a long story short, I ended up assembling the new bunk bed and rearranging the toy room and the boy's bedroom on Monday afternoon. I did most of the work by myself while the kids occupied themselves watching videos and playing on their own. Josiah helped a bit when I got into a bit of a fix. I kept saying "Dangit!" when something didn't work quite right and Josiah kept responding, "Mommy, that's a bad word. Please don't use bad words anymore."

Josiah also used part of the time I was busy working on the bed to crumble some of the styrofoam packing all over the house! I knew he was up to something when I heard him
laughing nefariously (seriously - he was cackling while he went around on his crumbling mission). Elijah used part of the time to dump foam alphabet stickers all over the family room. By bedtime I had finished building the bed, cleaned up the toy room, bedroom and family room and vacuumed most of the styrofoam up. Oh yeah, I also did a few loads of laundry. The next day I woke up tired, bruised and sore. Actually, I'm still bruised and sore.

To make matters worse, I'm still tired. Why? I found out that you can't use a safety rail on a bunk bed. It's not safe. (sigh). Thinking I was oh-so-smart I put the mattress crib on the floor next to the bunk bed and put the safety rail on the crib mattress. I figured if Elijah fell out of the bottom bunk he would land comfortably on the crib mattress and that the safety rail would keep him from rolling onto the floor (and waking us up). Not so. He woke me up two or three times last night. He falls comfortably onto the crib mattress and then ends up scooting off the head or foot of the mattress, which are still open. Then he kicks the floor to sooth himself back to sleep, which always wakes me up and I just can't leave him sleeping on the floor without feeling guilty. Well, that and I can't fall back to sleep with all of that incessant foot banging!

So, our investment of approximately $400 and 6 hours of hard labor for a good nights sleep resulted in a battered and bruised body and a new bed that both kids think is fun. It did not, however, result in better sleep for Elijah or for the rest of us. Oh well. He has to learn how to stay in his bed all night eventually, right? Until then don't be surprised if I'm a little tired and grumpy.

Photos of Elijah's Birthday and First Day of School

Here are some photos of Elijah's birthday and his first day of school:














Yay! I'm finally three years old!
















Trying to put on a new shirt.
















Birthday cake, yum!




















Yay! I finally get to go to school!




















Isn't his backpack cute?

Bus Woes

We have decided to have both of our kids take the bus to school. Our decision is based on a number of factors including what is best for the kids, what works best in our daily schedule, safety and what is best for the environment. As well thought out as our reasons may be, I am still feeling mommy guilt and recent situations with the bus have only increased my anxieties.

When Josiah started taking the bus to school we had problems with the bus not showing up because he was new to the route and they forgot about him. This winter the bus was extremely late a number of times due to substitute drivers who did not know the route very well. So, we knew there might be some glitches, but were hopeful that things might go well. This was not be.

Elijah started preschool last week and we've been waiting for the bus company to call and tell us when they would begin providing bus service for Elijah. We had not received any calls so I left for work yesterday thinking that Elijah's grandma would drive him to and from school again (I'm stuck in meetings for work most of this week and can't be home as much as usual). So, when the school called at 2:40 and told me that Elijah was stuck on the bus because there was no one home for the bus driver to drop him off, I freaked out a little. Okay, a lot. ("What?! I didn't even know he was on the bus today! Why didn't anyone call?!")

After a frantic phone call I learned that Elijah was already at home at that his grandma had driven him both to and from school. Apparently, the driver was new to the route and did not know the kids by sight and had misunderstood which kid was actually on the bus. Eek! When I told Al about my conversation with his mom, he laughed and said she probably thought I was crazy. ("Mom? Where are you?! Elijah's still on the bus and they said you're not home!...No, not Josiah, Elijah! He's stuck on the bus!")

Later the bus company left a message saying that they would begin Elijah on the bus on Wednesday. I called back that evening to remind them that Elijah needs a safety vest and to make sure I knew as much information as possible about what to expect.

Today I received another phone call, this time from Elijah's grandma. The bus arrived on time, but they did not have a safety vest for Elijah. Thankfully, Grandma said she would not allow Elijah on the bus without a safety vest. Unfortunately, I did not think to leave my car keys at home which meant that she had to transfer the car seat from my car to her own, which is not an easy task. She seemed very flustered and kept mentioning that she does not trust the bus company. This, of course, simply adds to both my anxiety and my sense of guilt. sigh.

I called the school to explain that Elijah would be late and to complain about the bus. They are working to remedy the situation.

On the bright side, Elijah's principal called to tell me how well Elijah is doing in class. She had just visited his class briefly and mentioned that he sat for most of the circle time. She also mentioned that one of the teacher's aide's said that Elijah is "really smart." Yay, Elijah! I really like our school. I just wish the bus company was a little more reliable.

Elijah is Three!

This has been a significant week for Elijah. His Individualized Education Plan (IEP) meeting with his school was on Monday, his third birthday on Tuesday and his first day of preschool on Wednesday!

We are very pleased with the IEP and the services that Elijah will receive. Our school district has been very easy to work with so far. Elijah's birthday was fun, but low-key. Al's mom and brother came over for dinner and we had cake and presents. Josiah had fun helping Elijah open his gifts and Elijah had fun throwing his arms in the air and yelling "Yay!" when we wished him a happy birthday.

Elijah's first day of school went well. He was a little nervous when I dropped him off, but had a good day. His teacher reported that he was happy and that he enjoyed exploring the room. I had a much harder time. I was able to hold my smile while dropping him off but started crying as soon as I got in my car to drive to work. Once I got to work I bawled in my office for awhile. He's just so small and he's our last child and he's starting preschool earlier than Josiah did... It all added up to a traumatic couple of hours for me. I felt much better once Al picked Elijah up from school and called to assure me that Elijah had a good first day. I think Elijah will really enjoy school once he gets used to the new setting and the new people.

Sleepwalking

I woke up at 3:00 this morning to the sound of someone closing the refrigerator. A quick glance to my left confirmed that Al was still in bed so I quickly got up to investigate. I found Elijah sleeping in the hallway outside the kitchen and a jar of applesauce (his favorite food) sitting on the kitchen table.

At 4:00 this morning I thought I saw Elijah walk past our bedroom door. I worried that he might fall down the stairs in his sleep and struggled to wake up or at least wake Al up. I thought, "I have to get him! I have to get him!" When I finally woke up I realized I had been dreaming. I got up to check on Elijah. It was dark and I couldn't see very well. I leaned forward to look into the hallway and bonked my head on our closed bedroom door. Al woke up when I said, "Ow!" a little too loudly. Elijah, of course, was sound asleep in his bed. I wasn't able to fall asleep again.

On a happier note, on Sunday Elijah walked up to me at our church Easter celebration, signed "Love" and gave me a big hug. That was the first time Elijah told me he loved me. It made an already wonderful day even better!

Goodbye Crib

I was talking on the phone during Elijah's nap on Saturday when I heard a thud. I thought he had thrown a book or something out of his crib, but then I heard some scuffling. When I went to check on him, Elijah met me at his bedroom door! I practically hung up on my friend, exclaiming, "Oh! He got out his crib! I have to go." He had climbed out (even with his cast) and was ready to play. Fortunately, he wasn't hurt or even upset by the fall. I spent the rest of his nap time converting the crib to a toddler bed. We are keeping pillows around his bed until he learns how to sleep in the toddler bed without falling out.

He fell out of bed twice the first night. I awoke to a soft thumping (he self-soothes by bumping his head or foot on the mattress). I could tell he was thumping against the floor instead of the mattress. I got up to check on him and sure enough, he was sleeping on the floor. He barely even woke up either time. I gently put him back in bed.

The next day I was away during his nap time. I came home to this:

(note the pillows near his bed)

Elijah clearly was not interested in napping and since Al had closed the door, he decided it would be fun to throw everything on the floor. Sigh. I suspect that he will either stop taking naps most days or that we will have to monitor him until he falls asleep each afternoon.

It's kind-of bittersweet. On the one hand I'm proud that he is growing into a "big boy" and is ready for the toddler bed. On the other hand, we probably don't have any more babies and it's a little sad to say goodbye to the crib (and all of the sweet baby things associated with a crib).

Elijah's Favorite Activities

Elijah loves videos! He is particularly fond of Blue's Clues, The Wiggles and one particular episode of Barney. His favorite activity with the videos is watching them. He is fully capable of finding a video, putting it into the TV/VCR, stopping, rewinding, fast-forwarding and ejecting videos. His second favorite activity (or perhaps a frustrating by-product of his favorite) is pulling the videos off the shelf, out of their cases and onto the floor.

Another of Elijah's favorite activities is pulling toys out of the toy bin and pushing them into the space under the piano keyboard. If we want to play the piano at our house, we first have to kick all of the toys out of the way (or, if we're really energetic, put them back into the toy bins). The other day I spent 20 minutes putting all of the toys back into their bins. Then, while I was making lunch, Elijah emptied all of the toys right back under the piano.

And finally, Elijah has taken to throwing his plate of food across the kitchen when he doesn't like something or is finished eating. This frustrates Al even more than it does me (wasting food is worse than making a mess to him).

Some days I am incredibly frustrated by Elijah's seeming to desire to make large messes. I am not fond of putting 30 videos back into their cases and onto the shelves and am even less fond of sorting toys into bins and wiping spaghetti sauce off the floor. And doing any of these two or three times a day can be close to torture. On other days I am too preoccupied to take much notice. I end up cleaning the messes either way (which is not to say that Al doesn't clean up messes too, just that I clean up the messes Elijah makes while I'm watching him).

On good days, I am able to focus on Elijah enough so that he is occupied with more useful tasks like putting together puzzles, identifying words and objects or pretending to cook. I wish I had the time and energy to focus on Elijah all of the time, but that simply isn't possible. There are meals to cook, floors to clean and other people in my family who need me. Actually, I'm thankful that Elijah is able to play on his own and doesn't demand constant attention. Now, if I can just encourage him to clean up the house instead of making messes... hmmm, I suspect that won't be happening any time soon though.

Getting Ready

Elijah will celebrate his third birthday in April. He will also begin preschool. Last week we met with a representative from our school district to discuss the transition from Early Intervention to Early Childhood (preschool), from an Individualized Family Service Plan (IFSP) to an Individualized Education Plan (IEP). The meeting went well and I look forward to working with the school district to help Elijah reach his full potential in school.

When I talk with other families about their experiences creating an IEP with their school district, I sometimes get the sense that their relationship with the school district is somewhat adversarial. It almost seems as if the families expect the school district to give them a bad deal and to deny services that their children need. I am choosing to enter the process assuming that the school district wants to work with us to provide the services Elijah needs. I have to believe that the teachers, therapists and other professionals involved in early childhood education want what is best for all of the children in their care. We may not always agree about what specific services should be offered, but I hope to build a relationship of mutual trust and respect where we can discuss differing opinions without animosity.

I truly want what is best for Elijah and am prepared to advocate for services I think he really needs. At the same time, I think building a good relationship with the school district is important to this goal. If I am pleasant and willing to work with the district to coordinate Elijah's education, I am hopeful that the district will do whatever they can to return the favor. If I am angry and difficult to work with before we even have a disagreement, I can't imagine that they will be eager to work with me. Advocating for my child does not necessarily mean I have to put up a good fight. It does mean I have to know my child, including his strengths and weaknesses, and communicate those things effectively. It also means understanding the IEP process and our families legal rights and doing my best to form a good working relationship with those involved so we can work together to meet Elijah's needs.

The next few months should be interesting. Elijah will be assessed by a team of professionals who will probably focus on his weaknesses more than his strengths (they are, after all, determining if he needs extra help). Once they determine if Elijah is eligible for services, we will meet to discuss which services he needs, to create goals for his education and then to create specific plans on how to reach those goals. And at the end of it all I have to send Elijah off to preschool. I am sure preschool will be very good for him, but I'm glad I have another few months to get used to the idea. Sending Josiah to school for the first time was hard. This will be harder.

The Writing on the Wall

This morning I heard Al walk into the hallway and yell, "Elijah, No!" Elijah had a crayon in hand was preparing the decorate our hallway wall. We sighed, relieved that we had caught him before he was able to begin coloring.

A few minutes later Al came into the bathroom where I was applying my make-up and said, "He already wrote on the wall in the dining room." I walked into the dining room, noted the marks (relatively few) and went to get the Magic Eraser (I love this thing! If you have a toddler, you need a Magic Eraser). I handed the eraser to Elijah and instructed him to get to work cleaning the wall. I needed to finish getting ready for work, so I left Al and Elijah to their cleaning.

As I was walking away Al called me back. "Elijah pointed to the wall and said, 'A' and 'E'!" Apparently he was practicing his writing skills. I suppose this means we should give him more opportunities to draw. He still eats crayons (or writes on inappropriate surfaces), so we're usually hesitant to give them to him. Well, I can read the writing on the wall and it says, "Let this child color (on paper) more often!"

Dada

Elijah is beginning to talk a little bit. He has said "dada" and "papa" and even something that sounded like "Josiah" and "Elijah." He has not, however, said "Mama" yet. He can say "em" when he sees the letter "M," but he refuses to say "Mama."

This morning I was repeating "mama" to Elijah in the hopes that he would imitate the sound. After a while Elijah put his little hands on my cheeks, turned my face towards his, looked me in the eye and said... "dada!" (sigh).

Recent Photos

I feel like I should post something, but I don't have much to say this week. So here are some recent photos of the kids. Enjoy!

Look out! This kid is dangerously fun!

Ready for the first day of kindergarten...

Here we go!

I love this duck! (It sings "Splish, Splash I Was Taking a Bath" while dancing). Thanks Grandma and Grandpa!


Hanging out at the arboretum where some real splishing and splashing is possible.

Riding the tram at the arboretum.

This is so much fun!

Do you like my new jammies and haircut?

Elijah's New Obsession

Elijah has a new obsession. We can't go anywhere or do anything without him displaying this fascination. He can sit still for up to half an hour when we indulge this passion. Elijah has discovered...the alphabet!

I suppose we shouldn't be too surprised given how much time our family spends reading books. Even so, I am absolutely delighted! One of Josiah's kindergarten objectives is to know every letter of the alphabet and the sound each letter makes. So, my 2-year old son (who happens to have Down Syndrome) is working on kindergarten level material! I know other two year olds already know their alphabet, but that doesn't make me any less proud of Elijah.

Anywhere we go Elijah points to the letters and waits for us to identify them. His favorite attraction at the Dupage Children's Museum was their art gallery. He didn't look at the art work though. He stood in front of the large sign and pointed at each letter in the word "Gallery" (the only word that was at his height) over and over and over again. When he sits in a grocery cart he points and the letters on the handle. He screams when it is time to put away his alphabet books. (OK, he actually screams anytime we take a book away from him). Anytime he notices the letter "A" he points and declares "A!" He can also identify the letters "E," "F" and sometimes "M." (Which also shows that his speech is beginning to progress more).

I often sit and write the alphabet for him on a Magna Doodle on letter at a time. He will sit through the entire alphabet and then sign, "more!" On some days I have gone through the entire alphabet three or four times and he still asks for more. Whenever I sing the alphabet song I also sign each letter. Now when he hears me sing the alphabet song he moves his hand around as if he were signing the letters with me. It's so cute!

This is one obsession that Al and I are happy to indulge!

Jump!

Elijah's physical therapist wants Elijah to learn how to jump. During PT sessions she has him stand on a short step and helps him "jump" to the floor. He loves it and asks for more when she stops. He has started imitating us a lot recently, so during our last PT session I stood in front of Elijah while holding his hands and showed him to to jump. I bent my knees, waited for him to do the same, and said "1, 2, 3... Jump!" I jumped and Elijah tried to imitate by straightening his legs quickly.

Yesterday I was playing with Elijah and he started to "jump" by himself. His feet still don't leave the floor, but he bends his knees, smiles and then stands up straight very fast while raising his little arms over his head. "Yay Elijah" I rejoiced with him. Then I said, "Jump!" He did again, said "ump!" and then signed "jump" too! It was wonderful! He's been imitating speech more often, but this is one of his first "clear" words ("clear" meaning I know that he meant to say it and that he knew what he was saying). I am so proud of him!

Cute Kid Stuff

Here are some cute things the kids have said and done recently:

• On Saturday Al took the kids to a picnic while I stayed home. Josiah didn't realize that I was not going with them until we were saying good bye. He looked at me and said, "Mommy, I can't live without you." It was very cute and made me melt a little.

• Al was talking with Josiah about college and Josiah, hesitant about leaving home, said, "Will you and Mommy come with me?" Al assured him that when it was time for college Josiah would be happy to leave without us. Al mentioned that maybe Josiah would meet a cute girl at college and asked Josiah what color hair the girl might have (don't ask me why Al was talking about this with a five-year old). Josiah said the girl would have blond hair "like Mommy."

• Last night we read a Bible story from Philippians 2, which led to a talk about temptation and the difference between thinking about doing something bad (temptation) and actually doing it (sin). So, I said something like, "Temptation is like when you think about stealing a cookie when no one is looking. If you don't actually steal the cookie, you haven't actually done anything bad. But if you do steal the cookie, that is bad. Its not always naughty to think about bad things, but you should not do bad things." We talked for awhile about Jesus being tempted and such. After a while I tried to wrap things up and pray, but Josiah said, "Wait, Mom. Let's think about some bad things for awhile." I think this may have been an attempt to delay bedtime, but it left me a little flabbergasted. That's not exactly what I meant to encourage...

• Elijah has started imitating us a lot. Yesterday he followed me around the kitchen and copied me: open refrigerator, close drawer, dry hands on towel - almost everything I did, he at least tried to do. Later on he even put a bunch of pots up on the kitchen table like he was trying to cook something.

• For the last few days every time I sneeze at home Elijah "sneezes" too. He even puts his hand over his mouth.

• Elijah loves getting piggy back rides. If we are sitting on the floor he'll come up behind us and start climbing on our back. Once he is on our back he signs "go" and tries to say the word (although it usually comes out "bu" or something similar). At church this weekend we were standing in line for Eucharist when Elijah leaned forward in Al's arms and tried to climb onto my back for a ride! I'm not sure if anyone else noticed, but I thought it was pretty funny.

Elijah's Surgery

Elijah had minor surgery last Thursday. He needed to have his PE tubes (in his ears) replaced. He also had his tear ducts probed and tubes installed in his tear ducts. We thought we might need to reschedule the surgery since Elijah had a runny nose, but the doctors examined him and then gave the go ahead to proceed.

Elijah was great. We had to arrive at the hospital at 6:30 a.m., which meant we both had to get up earlier than usual to make the 45 minute drive and arrive on time. Elijah wasn't supposed to eat anything before the surgery, but he was in a remarkably good mood for a tired and hungry kid. The surgery was scheduled for 8:30 and didn't actually happen until closer to 9:00, so we had a long wait. The nurse was very concerned about Elijah's runny nose and spent time on the phone with our ENT (Ear, Nose & Throat doctor) and other doctors. Elijah spent the time exploring the room (opening every door and drawer and trying to toss medical supplies around the room), taking off his slippers over and over again and riding in a wagon the hospital had available for the younger patients. I spent the time wiping Elijah's nose, keeping Elijah out of drawers and pulling a wagon around the halls (and around and around and around...)

The surgery itself was pretty quick. Our ENT, Dr. Marra, is really fast. I didn't have time to finish reading more than a few pages in my book when Dr. Marra came into the waiting room and tapped my shoulder. The first part of the surgery had gone well. Elijah had new tubes, clean ears and all of the extra fluid that makes it hard for him to hear had been drained. The second part of the surgery (his tear ducts) took a little longer. Even so, Dr. Ticho (the eye doctor) came out for me before I finished reading my chapter. Elijah's eyes were fine and his tear ducts were free from obstruction.

Within a few minutes I was called back to the recovery room. Elijah was very upset. He had gone into surgery smiling and complacent, but now he was wailing. As soon as he saw me he stretched his arms out towards me. I dropped my coat and bags and rushed over to hold him. For the next hour he cried and I held him. They moved us from the recovery room to a private room and Elijah had to get into the crib for the transport. He did not want to get back in the crib and I had to keep my arm around him for the entire trip.

They wanted Elijah to drink something before they removed his IV. Elijah wanted them to get rid of the IV before he did anything. His right hand and arm were taped to a plastic board with the IV in his hand. He couldn't hold a cup or use his signs to communicate. He was very frustrated and batted away every cup we offered him and refused to eat the Popsicle. I finally pulled out some banana flavored puffs (one of his current favorites) and he calmed down enough to eat a few handfuls of the puffs and take a few sips of water. Soon after that they took out the IV and told us we were free to go home.

I'm thankful the surgery went well and that, other than the first hour, Elijah's recovery has been a breeze. Now I just need to get ready for Josiah's kiddie root canal tomorrow...

Happy Birthday Elijah!

Sunday was Elijah's second birthday. It was a pretty full day celebrating both Easter and his birthday, but it was a lot of fun. It's hard to believe that Elijah is already two years old!

We are so proud of Elijah. He has a great laugh and gives wonderful hugs. He enjoys it when we tickle him and even when Josiah wrestles with him. He loves to read books and watch Signing Time and other kids' shows. He is walking and climbing and transitioning from sitting to standing without help. He can play at the playground now instead of sitting in the swing or stroller watching everyone else.

He knows at least twenty to thirty signs and is learning new signs every week. He will sit and look through his Signing Time books and do the sign for each picture. It's very cute and it's encouraging to see him identifying and naming objects on his own.

With all of these achievements, Elijah is also starting to get into trouble more often. He loves to take the grates off of the heater vents and occasionally throws a toy into the vent. Josiah is very vigilant about protecting the vents. A few times each day we hear the clunk of Elijah removing a grate immediately followed by Josiah running across the house yelling, "No, Elijah!" (I think Josiah will pass his hearing screening with flying colors!) If we are not careful to push all of the dining room chairs in, we are certain to find Elijah sitting in a chair or on top of the table.

Elijah wore a new outfit for Easter and his birthday. By the end of the day he figured out how to use his vest to play "Peek-a-boo!"

We're so glad that Elijah is part of our family. It's fun to watch him grow and learn. He is a blessing and brings us a lot of joy.

Psalm 139

I used to like Psalm 139. You know, the one where the psalmist says,

For you created my inmost being;
you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

In December 2004 we learned that our son, Elijah, had Down Syndrome. Since then this Psalm has made me angry. I tend to think that Down Syndrome is part of living in a fallen world rather than something God created on purpose, but this Psalm seems to indicate otherwise. So, I have been complaining to God, "If you knit Elijah together in my womb, why isn't he 'perfect'? He has a birth defect. How am I supposed to call that wonderful?"

Now, let me be clear, I love Elijah. He is a great kid with a wonderful laugh and he brings us so much joy. When we first received his diagnosis I thought he might be a burden to care for, but he isn't. Taking care of Elijah is not that much different than raising his brother Josiah.

That being said, I still irks me to think that God intentionally "knit" Elijah together with an extra chromosome and I have been quite open with God about this. I have been reading Philip Yancey's new book Prayer. His chapters on unanswered prayer have been particularly helpful. Last night I read the chapter on physical healing, which mentions Down Syndrome specifically and talks about how God usually chooses to work within the laws of nature. Miracles happen, but they are the exception rather than the rule.

When I finished the chapter I talked with God regarding Down Syndrome yet again. And this time the image that came to mind was God carefully knitting a child together, but using yarn that was dirty and broken. The yarn was not his choice, but it was what he had to work with and he made the most beautiful child he could using imperfect materials.

Elijah is a wonderful creation of God. He may not be "perfect," but God took imperfect genes and "knit together" a beautiful child. Elijah is fearfully and wonderfully made. I don't understand the mysteries of how God works in a fallen world, but I trust his goodness. And for the first time in a long time Psalm 139 brings tears of joy instead of tears of pain.

Toddler Hugs

Very few things in the world are as wonderful as hugs from my kids. We begin each day with a "good morning hug" (complete with a song now), punctuate the day with hugs and end each day with a hug. Josiah is in the "I love you so much I want to crush you" stage. Getting a hug from him is sometimes like getting run over by a bulldozer.

Elijah, on the other hand, just figured out hugs yesterday. I was sitting in the living room reading a book when he toddled over (he's starting to take a lot more steps now!) and held his arms up in the classic "pick me up" pose. I gathered him into my lap and we just sat and listened to some music together. Then he leaned into me, wrapped his little arms around my shoulders and squeezed. I said, "Thanks for the hug, Elijah." And something clicked in his little head. Before yesterday Elijah would occasionally squeeze us a bit, but there weren't any obvious hugs. Yesterday, after I thanked him for the first hug, he started giving me a hug every 30 seconds or so. He would lean over and squeeze. I would squeeze back and say, "Thanks for the hug." Then he would let go and sit for a moment before leaning back in for another hug.

Dinner was about fifteen minutes late last night. I was busy being hugged by my toddler and getting dinner ready was not important enough to interrupt us.