September

Luke's rhyme from kindergarten: We will always remember all of the fun that we had in the month of September.

Near completion of the kitchen (painted, flooring, cabinets, granite, lighting)

Getaway weekend to Door County to celebrate Matt's 40th birthday and our 15th anniversary. Stayed in a room next door to porn stars.

Julia's second sinus surgery for September 27 cancelled (clear sinus CT in early September got her off the hook for now)

Decided to keep Julia out of school for a while to see if we can give her a chance to avoid some illnesses and stay healthier

Alex's sets up spy network to make sure Luke gets away with nothing at school

Alex is very independent with school. Usually does his homework first thing when he gets home from school. Reads at bedtime. Seems to be developing a liking for reading. No complaints about his teacher (Mrs. Wierzbicki). Overall seems to be a good school year so far.

Alex rides his bike to school for the first time (with Austin and Sam).

Best friends still Jacob Amidon and Matthew Benedum, but spending lots of time with Austin after school.

Alex took Cooper to the dog park with Matthew and his family.

Luke shows us he is quite an artist, taking time to make all of his coloring superneat

At the start of the second full week of school, Luke said, "I can't wait for Christmas vacation. I need a break that is longer than two days."

Erica successfully becomes a "Kool Kid" - the night before her first day in Kool Kids, she said, "I am a little scared to be a Kool Kid because one of the girls going to Kool Kids was crying today. But, I won't cry." She hasn't had any problems.

Her first 4K friend - Kyle Slavik. Nearly every day she comes home on the 4K bus, she is in the front seat behind the driver sitting with Kyle and Heather. Even with a nearly empty bus, they sit three in a seat, and Erica is usually by the window or in the middle even though she's the first one off.

Added Julie to Julia's nursing team.

It's Not Fair

I know it's not healthy to be in the 'It's not fair' line, but this week I've been throwing a little pity party for myself. It almost seems backwards since Julia's been having a really good string of days, but I have been in a foul mood. At this moment in time, I am just plain fed up. I don't want Julia to have to do extra nebulizer treatments each day, be on a heavy duty oral antibiotic and have another sinus surgery - all to resolve a problem we thought we fixed with the sinus surgery in May. Enough already. Especially since each of these treatment options comes at a price. The topical antibiotic/nebulizer treatments are difficult to administer and expensive. The Zyvox was hard to find and the dosage was wrong - pharmacist Mommy figured it out after two pharmacists and the doctor missed the dosing error. And we have to do bloodwork to make sure her platelets are okay. Another sinus surgery...ugh. Not to mention, we need to do another CT scan prior to surgery. Lately it seems I spend most days that I am not working either at Children's or on the phone with Children's. It is exhausting to keep up with all of the medical stuff. And, if truth be told, I am tired of having a nurse in our home every weekday. We completely appreciate all of the help they give us, but some days I just want to hang out in my jammies or act silly with my kids or read a book without feeling weird. Privacy. Down time. Family time. I miss those things.

Okay, I know it's time for the pity party to come to an end. Because as we've learned during these last eight and a half years, the 'It's not fair' line doesn't move. So, it's best to just move on. After all, I don't see Julia complaining, and she's the one who is most entitled to it. I guess it's time to go back to doing a gratitude journal again. Counting my blessings is sure to get me in a better mood, isn't it?

Suite 1101

It has been a long week. Preceded by a long winter. This winter has been a long, hard learning experience for us. Julia has had back-to-back-to-back sinus infections. We've been working with an ENT for the last couple of months (Dr. Sulman, who is an AWESOME addition to Julia's team). She started us with 4 weeks of antibiotics. Followed by a CT scan. Followed by 4 more weeks of antibiotics. Followed by a week of clarythromycin. Followed by an ambulance ride. Followed by six days at Children's. Followed by a 3-hour sinus surgery. Followed by at least two weeks of Vancomycin IV antibiotics.

The nearly week-long stay at the hospital was spent in the penthouse suite - the largest room on the top floor of patient rooms. Beautiful room, huge bathroom, and just not home. Bad bed, no sleep, lots of stress, beeping machines. Quiet time, great views, no cooking, reading books. Not-so-great nurses, PICC line, CT scan, postponed surgery. Healthier, happier Julia. And, it is so good to be on the other side of this challenge. Even though the last couple of weeks have been filled with stress and roadblocks, we are so hopeful that the payoff is going to be huge - we're getting our happy, spunky, sassy girl back again, and it is so nice.

So, even though life doesn't always seem fair, right now it feels so good. We have so much to be grateful for. Seems to me I got the best birthday gift I could have hoped for this year. And, the long road getting here makes it so much sweeter.

January Round-Up

- Making eggnog pound cake and eggnog muffins in an attempt to use up lots and lots of leftover eggnog.
- Alex brought home a C on his Social Studies test (first C I can remember him getting), and was quite upset about it.
- Julia had some sporatic attendance at school. Although she has been relatively healthy, she has lots and lots of sinus congestion. It takes the whole morning to get things moving and cleared out. She saw a new pediatrician who said she is not contagious. Nice thought, but everyone but Luke has the same sinus junk and cough, so if it's not contagious, how did we all get it at the same time??
- Cooper is still chewing - latest casualty is the Super Mario Brothers DS game.

December Round-Up

All in all, not a bad month:

- Julia returned to school on December 23, just in time for some holiday celebrations. She had a great day. She had been absent for just over two months.
- We took two trips to the Enchantment in the Park light display at Fair Park. The outdoor courtyard with the light display sychronized to music was my favorite part. I even found a new holiday song I LOVE - Snowflake.
- Lots and lots of gifts for the kids - highlight was Luke's new Nintendo DS. In his words, he got the grand prize.
- Tubing at Sunburst with my boys. It was packed, but we had a good time.
- A very white Christmas - I'm not sure what the stats say, but it seems like we're getting a lot of snow this season. It did make for an eventful drive to and from Matt's parents on the 26th.
- After waiting until nearly the last minute, we pulled off another year of cookie trays.
- Going with Erica, Luke and Alex to see "The Squeakquel" - after dinner at Noodles, we still had room for soda, popcorn and M'n'Ms at the movie. Yummy. The movie was good, but I did like the first one a little bit better.

Wardrobe Management

I have spent the last three days doing laundry. But, it's really more than just doing laundry - it's more wardrobe management. Sorting, washing, folding, hanging and putting away clothes for six people is a huge job. On top of that, I have a complete system for processing hand-me-downs and advance-purchase clothes. The system is pretty straighforward for the boys - Alex outgrows his clothes, they go into storage tubs in the basement,they come out when they fit Luke. The system for girls is a little more complicated, but in a good way. We are lucky to get lots and lots of hand-me-downs. Sources include: the Hoxworth girls, the McLaughlin girls, and now the Christiansen girls. Some of the hand-me-downs fit Julia, some fit Erica, and some are in-between. By the time all of the clothes get to Erica, she has about three complete wardrobes, complete with shoes and accessories. A perfect situation for my little style diva.

Merry Christmas from the Rosners

Sometimes, God makes it a little more challenging to count your blessings. For us, this has been one of those years. We've had what seemed to be more than our share of heartbreak and anxiety. In June, Michele's Grandma Maddie passed away. In October, her Grandma Ertl died. Later in October, Julia got the H1N1 virus, and she's been sick ever since, fighting back-to-back illesses. Over the last few months, our dishwasher started on fire, our washing machine started spraying water on the floor and the transmission on our relatively new van had to be replaced. Matt's had four weeks of work furloughs, with one more coming over the holidays. There have been days when we've wanted to pull the covers back over our heads and just hide out for a while.

But, there's the other side of the story - the wonderful blessings that far outweigh the difficulties. Although they are very much missed, both grandmas lived long, full, happy lives. As sick as Julia has been, she has not needed to be hospitalized and she's on the road to recovery. The new dishwasher works great, Matt fixed the washing machine and our van should run for many more years. And, while Matt's been on furlough, Michele is able to work as many hours as she can.

We are so lucky. Four kids that fill our lives with laughter and love. Erica is headstrong and sweet. Luke is lovable and happy. Julia is strong and easy-going. Alex is smart and thoughtful. They make us laugh every single day. And, we have a new furry addition - a teddy bear puppy named Cooper joined our family in August. We may be biased, but he's the cutest little guy on four legs we've ever seen. He's also a little stinker, but we can't help but love him.

Happy holidays to our family and friends. We hope that your blessings far outnumber the challenges you face.

Wishing you peace, love and hope -
The Rosners

October Round-Up

This month might have passed by more quickly than any month I can remember. In many ways, that is a good thing because it was not a stellar month:

• Grandma Ertl died (Oct 7). Uncle Andy died just five days later.
• Sick, sick and sick - Erica and Luke ran fevers off and on for days (each missed a few days of school, may or may not have been a mild case of H1N1), I had a sinus infection (finally got antibiotics after weeks of trying to tough it out), Alex got H1N1 (missed the three days of school during the 3-day teacher convention week), Julia got probable H1N1 (treated with Tamiflu) followed by pneumonia (treated with Zithromax). The ironic part is we did everything we could think of to protect Julia from the swine flu. We kept her home as soon as we heard rumor of an outbreak at her school, we got her immunized at the first opportunity (along with Luke, Erica, me and Matt), we kept her home after the immunization to give it time to fully protect her. The upside - maybe the immunization provided some protection so she didn't get even sicker. The other upside - we don't have to worry about getting it anymore because now we've had it.
• Julia's impact reaches further than we sometimes realize. My co-worker's daughter (Brianna) started a prayer chain with her friends as soon as she heard Julia had H1N1. That's one cool 8th grader. Jill brought us brownies and banana bread. Many others prayed and sent get well wishes.
• Julia has a team of three nurses (soon to be four). Maggie is here three days a week (T, W, R), Christa is here Mondays, Christine is here Fridays. We have been so grateful for their help with getting Julia well again. She is a full-time job!
• Furlough week - Matt was on furlough the week the kids were all sick - not so lucky for him. And, I didn't make a lot of progress on my work projects because I was so tired and worried, I could not function all that well.
• Halloween - Alex (Spider-Man), Luke (dinosaur) and Erica (princess) were well enough to trick or treat at my work on Friday. And, in spite of cold, windy weather, we did trick-or-treat around our neighborhood on Saturday. The boys wore winter coats under their costumes and Erica was a pink poodle instead of a princess. True to form, Erica started complaining about five houses from home. She wanted to trick or treat at my work instead of outside - not an option. Luke soon was asking for water - also not an option. We were with the McLaughlins, so Erica rode in the stroller with Ally and Luke was busy running with Ryan, so he mostly forgot how thirsty he was. We made it for 1 1/4 hours of trick-or-treating, and we now have LOTS of candy.
• Had Julia's IEP meeting - Let's just say it didn't go all that well, and I now have a newfound dislike for plastic apples. I'm not sure when Julia's team gave up on her, but they seem to have lost faith in her ability to do anything. So discouraging, but we're going to keep exploring our alternatives because Julia deserves a team that believes in her as much as we do! We did have an evaluation for private physical therapy, and that should be getting started soon.
• Luke started swimming lessons. We both had a great time. Luke loved the shower after swimming almost as much as the lesson itself. It was a great chance to have some one-on-one time with my little guy who seems to be growing up way too quickly lately.
• Alex was extremely busy with Cub Scouts. He earned a couple of badges and belt loops this month. Scout outings included a trip to Horicon Marsh (Matt also liked that one) and a trip to Pike Lake to learn from one of the rangers. Alex left a really good impression with his intelligent answers, and the ranger tracked him down after the session to compliment him and tell him about a ranger shadowing program for high school kids in case Alex develops an interest in being a ranger.

Siblings

One of the most rewarding and fascinating parts about having a larger family – sibling dynamics. Watching each of the kids develop their own unique personality, and then watching how those personalities mesh together into one family…it’s remarkable. I can give a quick summary of what the relationships look like on the surface: Alex and Luke fight as often as they got along, Luke and Erica are great buddies, Erica and Julia share a special sister bond, Alex is very protective of Erica. But, that doesn’t come anywhere near describing the depth of the relationship the kids have with one another. There are the subtle ways that Erica copies the things her brothers do; how Alex seems to ignore Julia, but listens and processes everything that’s happening with her; the bond that’s growing stronger between the boys now that Luke’s growing up and they are in the same school; the way they all accept Julia’s limitations without question or complaint (most of the time); the teamwork between them as they work for a common cause (usually in a team-up against mom and dad); the way Erica tries to boss the boys around even though she’s just a little peanut – so many nuances that make their relationships impossible to understand completely. But, there is one thing that is crystal clear to me. As my kids get older, one of my greatest wishes for them is to develop, nurture and keep a strong bond and lots of love between all of them. They sure do make a dynamic team, and I hope the sibling bonds keep getting stronger.

Julia Bedulia

Oh what a summer it has been for my little lady. After completely shutting down for the last several weeks of school, she has blossomed this summer. She has been more verbal, more active, more happy, and even a bit more sassy. It has been a joy to see her have one good day after another. Even though we've had some rough days, her really good days have far outnumbered the bad. Here's what she's been doing:

• Playing with beads almost constantly
• Opening and closing her left hand to grasp items
• Using her vision to turn towards sound and look at things on her lap
• Spending 30-45 minutes in her stander without complaining
• Swinging and swinging and swinging
• "Talking" to us - she responding to questions and comments with vocalizations, and her timing is too perfect to be a coincidence. She likes to be part of the conversation, and I don't think she always agrees with us.
• Staying awake nearly all day every day (just some short catnaps once in a while after a rough seizure

Joy, joy, joy - our little girl is showing us what a hard worker and contented kid she is!

Boy vs. Bus

Julia's bus driver, Anna, is an absolute gem. She is so sweet to Julia, and the little kids both adore her. Many days, they slip on whatever shoes they can grab, throw on a coat and race outside in their jammies so they can say hi to Anna. Luke helps push the buttons to lower and raise the lift. Anna 'pays' him with high fives. Today after four high fives, Luke said, "I'm really makin' some cash!" Anna has also commented that Julia helps with her seat belt - Julia holds it each morning until Anna clicks the two pieces together. I love that she notices the little things that Julia does. She is also very careful to make sure little ones are out of the way before she leaves. So, after Julia is secured on the bus, I round up Luke and Erica on the front patio. As soon as the bus is clear of the driveway, Luke takes off like a shot to race the bus to the corner. Anna drives really slow, and Luke can run pretty darn fast, so Luke usually wins. A few days ago, Luke started the race on his scooter, but that wasn't fast enough. So, he abandoned the scooter and finished the race on foot. At the corner, Anna waves good-bye, toots the horn and sends him back home.

There's a lesson in all of this - it doesn't take much to really make someone's day a lot better. School mornings tend to make me tense. We're on a tight schedule to make sure Julia is dressed, medicated, fed and packed for school - not to mention that the little ones need help with dressing and breakfast. So, while Julia is usually ready to go on time, there's not a lot of time to spare. Some of Julia's other bus drivers would blow the horn if Julia wasn't outside the second they pulled in the driveway. Anna takes a different approach. She's so relaxed that it helps me to relax. These days, she's here really early because Caitlin hasn't been on the bus. Instead of making me feel rushed, she puts the lift down and sits on the edge with her feet dangling over. She said she doesn't want to drive around to just kill time, so she just takes a few minutes to chill in our driveway. Jacob and Sam, the brothers that ride the bus with Julia, chill out with her. No worries, no horn beeping, no crabbiness...just smiles and laughing. It's amazing how one person's attitude can really help me get my day off to a better start. I hope that I can pass it on.

Obsession

I have an addiction. I need to have things to read. Books, magazines, the back of a cereal box, newsletters, emails, blogs...I consume words. For many years, my addiction was tamed - fours kids in six years left little time for the luxury of reading. And, when I did read, it was about kids. But, the book fast has ended, and I have been glutting myself on books. I suck them down at the rate of about one novel a day, 2-4 times a week. Shortly after I renewed myself with the consumption of books, I started having mild vision problems. My depth perception was off once in a while. At first, I didn't connect it with all of the extra work my eyes were doing. Turns out my eyes needed time to adjust to all of this extra exercise. Now, they are often tired and burning, but that's because I do most of my reading after the kids go to bed, making for many late nights.

My addiction is fed by the local library, along with the 40 libraries that it's connected to through an online system. Search, find, request, pick-up - it's not unusual for me to have 10+ books in the 'on hold' queue. It's like Christmas morning going to pick up a stack of 'my' books from the library.

Luke and Erica seem to share my problem. The library is a weekly destination for us at a minimum, but we try not to stop there daily for risk of being considered stalkers. And the kids have a whole new field of possibilities - CDs and DVDs. Music and movies to borrow and absorb and enjoy.

Julia also loves to be read to, and we work to track down colorful books and happy music for her each week. Alex still claims that he doesn't like to read, but frankly I think it's growing on him. And, I've hunted down a few treasures for him as well. Last year it was Captain Underpants, now we've moved to Diary of a Wimpy Kid. We're not far away from Harry Potter.

So, the fact that my library card now has 80 checkouts cannot be blamed wholly on me. Strawberry Shortcake videos and Bob and Wendy puppets and Barney music and train books and Lawnmower Boy are all in that count.

What can I say - at least my addiction is fairly cost effective because except for the occasional lost book or video, it doesn't cost anything but time.

Worry

I know that this is self-centered and not necessarily fair, but I want to know what people who have healthy children and good health themselves worry about. Often, I think that our lives would be so simple and so relaxed if Julia were a 'normal' child. There is no doubt that I love this girl thoroughly and with my whole heart and soul...that is not the issue here. I love her for the person she is, and I don't often travel down the road of imagining what she would be like if she didn't have Aicardi Syndrome.


But, the draining stress of worrying about issues both big and small is wearing me down. What to do about balancing seizure control and too many meds (we're not doing very well on either front as Julia's seizures have been in the not completely awful, but not great range while she is still on three different seizure meds), what to do about inclusion at school (my gut feel is that Julia should be spending more meaningful time with her regular ed class, but no one can seem to figure out how to do it), new mystery issues (her teacher pointed out that Julia has not been using her right leg/foot - sure enough, after studying her for the last couple of days, she really is not using her foot and she seems to be using her right hand much less as well - I'm in overdrive coming up with very scary explanations for why this might be happening), working to find a nurse (we were hoping that we would find someone we had no doubts about, but instead we're doing a trial run with someone we're not 100% sure about). All of this is on top of regular doctor appointments, brace fittings, winter illnesses, forms and paperwork and just everyday life. Not to mention, I am really busy at work and can't seem to get caught up.

Breathe in, breathe out. My head knows that I just need to tackle these stuff one step at a time, but some days, I just don't want to deal with it.

On the bright side, my capacity for handling stress in a somewhat healthy way has increased by about 200% since the time Alex was a baby. If only the number of things to worry about had not increased by 250%, I would be one zen woman.

I guess God did not intend for me to be zen. Perhaps he has an inkling that I would turn into a complete couch potato if things got too relaxed. I guess he wants to keep me motivated.

This post has been entirely too much whining, but it's my blog and it felt good to get it off my chest. So, there.

Seizure Free Day - Hurray!!

Over the last week or so, Julia's seizures have been worse. We had nothing to explain it - she seems to be recovered from her sinus infection and healthy otherwise. And, we're back to the 'magic' medication combo that worked wonders late last fall. So, we were stumped. After 6+ years of challenging seizure activity, you would guess that I would be used to this guessing game. But, whenever her seizures act up, I get a knot of stress in my stomach. It just hangs there and casts a cloud over me.

Then, today came like a breath of fresh air - an entire day with no sustained seizures. Just a few myoclonic jerks, but nothing like the last few days. She woke up in a great mood, stayed in a great mood all day, was more active and excited than she has been in weeks - just a happy day. Even a couple of cat naps that did not end with a seizure. The knot in my stomach is loosening a bit.

I am hoping and praying and hoping and praying that this is not an isolated day, but instead will become the 'normal' for her.

Girl Stories

Julia has really been 'discovering' the right side of her body. Over the last few days, I've really noticed her looking towards her right. I love when she looks at me as I come to get her out of bed in the morning. And, she's looked to her right side to check things out in other positions, too.

And, tonight she spent some time grasping and even shaking a maraca. She gave it some big shakes with her left hand and some little shakes with her right hand. And, I must add it was hilarious to watch Erica try to put the maraca back into Julia's hand after she dropped it. Finally, after a couple of unsuccessful attempts at jamming it into Julia's fist, she announced, "Julia done." That Erica is quite the mother hen. It is absolutely heartwarming to see her love on Julia. As often as I think of how nice it would be if each of the kids could have their own room, I always end up more grateful for how close the girls are, due in part I'm sure to the special bond that comes from sharing sleeping space. Even the boys will typically turn off their fighting once they're in bed for the night. Turns out this house is just the right size.

Kids - A Snapshot in Time

Little things - important to remember. Slip your mind so quickly if you don't write them down. So, here is a look at the little things that really tell you who they are right now.

Alex -

• Checking out on school. The boy is just ready for summer vacation. It's hard to push for him to plug away at his homework, especially when the weather's nice. He's done such a great job this year that I don't think we need to worry if he slacks off a bit during these last couple of weeks.
• He's loving the Nintendo DS he got for his birthday; although, thankfully, he's not as totally obsessed with it as I thought he would be.
• He make up jokes (at least he claims he made them up): Pete and Repeat were sitting on a fence. Pete fell off. Who was left? Repeat... InchMe and PinchMe were in a boat. InchMe fell out. Who was left?
• Fights with his brother nearly constantly. Those boys have some fierce sibling rivalry.
• As much as he fights with Luke, he is so sweet and loving with Erica. He just adores that girl. I guess it's easier to get along with her because he doesn't see her as direct competition like he sees Luke.
• Gets along great with other kids, but also content to do his own thing. For a while we were worried that he was too much of a loner, but I don't think that's the case. He's the kind of kid that doesn't mind playing alone sometimes - he'd rather do what he wants by himself than do something he's not interested in with someone else. His teacher said he is a leader that won't do stupid things just because other kids are.
• Is very mechanically inclined. He understands Matt's machines better than some of the operators do.
• Still a hard worker. Happier to be doing a project than playing. Begs Matt to let him cut the grass (he can start the mower and mow some of the more open flat areas).
• Gives me hugs and kisses when I tuck him in at night. As much as I felt really sad and worried when we found out that he was missing several permanent teeth, it did start a wonderful nightly ritual. We brush and floss our teeth together almost every night, and then I tuck him in. It's just 5-10 minutes of one-on-one time, but it has been a true blessing.

Julia

• Still getting back to healthy. Ear infections followed by pneumonia followed by a mystery bug...it's been a rough couple of months for her. It sure does make us appreciate her personality and good spirits when it's been a while without having her really shine. It is a true blessing that she is such a strong little girl and that she is so easy going. She rarely fusses, never cries and just keeps plugging along, sick or not. So many lessons to learn from that girl.

Luke -

• So full of life that he sometimes sucks it right out of the rest of us. It's nearly impossible to keep up with him, so the best we can do is try to keep his energy focused. Because otherwise, you will have: melted popsicles behind the couch (or a half-finished yogurt drink or Cheerios or crumbs from a granola bar) - a boy needs his snacks along with a nail clipper or two - a boy needs to be well-groomed and take care of his 'nail problems' (nails that snag or are too sharp); dish soap smeared on the window sill and furniture - a boy needs to help his mom clean; books with the pages 'glued' together with toothpaste - a boy needs to do his craft projects; Luke and Erica sneaking out of the house - a boy needs to show his sister how to escape to the sandbox - there really is never a dull moment with that boy!
• Most trouble is followed by an explanation that begins "I just..."
• So full of love and so happy that it's easy to forgot how much trouble he can get into.
• Does not take a daily nap, but he should. He gave them up back in April or so when we moved him out of his crib. Once he was free, it became nearly impossible to keep him still enough to take a nap. He does make up for it at night though and usually sleeps from 7pm to 6:30am.
• Recently overheard him talking to himself saying, "I don't know everything. Someday I hope to know everything."
• Also said, "Erica doesn't know everything. I'm going to teach her everything I know."
• Makes friends so easily. It's not unusual for Luke to know more people than the rest of us. He doesn't just tag along to his big brother's stuff, but makes them his own - he's got friends at Alex's soccer, friends at Cub Scouts, etc. Not to mention his friends from school, neighbors, grocery store clerks...you get the idea. He's a true charmer.
• Uses big words...like "The mail has arrived," and "I need my helmet to fit properly." He was an early talker, and he still has really good verbal skills.

Okay, early to bed for a change. I need to add more to this list (didn't even get to Erica yet). Maybe tomorrow...or the next day.

Art Fair - Times Two

Sometimes it is not so easy to have kids attending two different elementary schools. Two sets of teachers and staff to figure out, two Christmas concerts, parent/teacher conferences in two places...just some logistical challenges.

Tonight was one of those duplicating nights - both Alex and Julia had their science and art fairs. We weren't sure what or if Julia would have any art projects on display because we're not sure how much time she spends in art class with the rest of her 5K friends. And, she couldn't point out her work or scope out the school in advance to find where her things were displayed. But, we the visit was a success. We found two of Julia's projects and several others done by her friends. We also ran into her classmate Caitlyn and her family - in fact, Julia is invited to her birthday party in a couple of weeks. After Julia's show, we went to Alex's. He had four projects in the show, and he's very proud of his work. He had a really neat picture of Pooh and Tigger, a banner, a name drawing and a googly eye picture (one character had a Pokemon tail...he is obsessed with Pokemon). Alex is always so excited to serve as the tour guide. We saw where Mrs. McCudden's room is (where he goes for his reading enrichment group). And, Alex took Luke to the bathroom - a success except Alex said he was so busy watching Luke to make sure he was okay, he peed on his shoes. Oh, my.

Even if it was a duplicating night, it was worth the double effort...now, what's going to happen when Luke and Erica hit the circuit?

Julia is 6!

I know that my mind works in weird ways. I create stress where there doesn't need to be any. But, for a couple of reasons that exist mainly in my own head, this birthday has weighed heavy on my heart for a while. First, although no one can tell us how long we will have Julia with us and medical advances can give her many more healthy years, I've heard that the many Aicardi girls die between the ages of 6-8. So, even though Julia has been very healthy and we've been seeing better seizure control than we've had in years, this birthday marks a scary kind of milestone.

Second, when Julia started kindergarten and began to be more included with her 5K class, I said that my biggest goal for the school year was for Julia to have a friend birthday party. It was really important to me that Julia have a regular birthday party - cake, games, the whole thing. I just wasn't sure to make it all work out. Even the invite list was a bit challenging - after all, I can't just ask Julia which special friends she would like to invite. Luckily, we have been blessed beyond measure to have Julia be a part of a class that includes some truly exceptional kids. Back in December, Julia was invited to her first friend party. Maya Morris will forever be etched in my heart as a very special little girl. Not only was she the first to invite Julia to a birthday party, but I think she truly sees Julia as just another little girl rather than the kid in a wheelchair. I think this because when I called to RSVP for the party, I mentioned that Julia was in a wheelchair just so there would be no surprises. And, that was the first time that Maya's mom had heard that Julia had special needs. I guess Maya had never thought it was important to mention it because it's not the first thing she sees about Julia. Kids are sometimes so much smarter than us grown-ups! Maya's party was at the bowling alley, and Julia and I both had a great time. All of the kids treated Julia like one of the gang - no one made us feel like it was a hassle to set up the bowling ramp when it was Julia's turn (in fact, they all wanted the chance to help Julia bowl).

Julia attended her second party during spring break. The birthday girl was Ashley Schoen, and her birthday is just a few days before Julia's. Another great experience.

And, then Sunday was the day for Julia's celebration. Maya and Ashley both came, along with Aubrey (another 5K friend) and Caitlyn (Julia's best buddy from OHI - to make it more special, this was Caitlyn's first birthday party). The day could not have been better. The girls were so patient and into the activities we had planned. And, so thoughtful. Buying gifts for Julia can be challenging. Yet, each of the girls gave Julia a very well-thought-out gift. From birthday cards that included music to a princess keyboard to a framed scrapbook page with photos of the party guests, each gift was truly a gift from the heart. And, a complete hit with both Julia and her siblings - Alex has tried to adopt the soft MushaBelly bird, Luke thinks the pink and purple 'hairball' is just his thing and Erica has fallen in love with the Abby Cadabby doll.

Such a good day, such a good experience...such a good reminder that the heart of life is good. It gives me happy tears every time I think about it.

Easter

We had a nice Easter. Finally, it was a Sunday where we were all healthy, so we began the morning with 7:30 mass. The kids were well-behaved (at least as good as it gets for them). I was especially proud of Alex since he was really excited to find his basket. The Easter Bunny left him a treasure hunt, and the first clue was under Mom's pillow for him to get only after church.

Best memory of each kid:

Julia - Looked so grown up in her Easter dress and headband (she slept most of the day, and we were grateful that she was just resting rather than having the sleepiness be the lead-in to some kind of bug)

Erica - OOOooooh - what she said about every item in her basket.

Luke - Kept telling us the "Easter Beagle" had been here. Also told us over and over that Jesus died on the cross to take away our bad choices.

Alex - Thought Mom was the Easter Bunny until he discovered that was impossible - the Easter Bunny came back while we were in church and hid Alex's basket in his bed. He's at that age where the Easter Bunny and Santa just don't make sense to his logical brain, but he still wants to believe.

All four - they all got "Crocs" in their baskets. It will make me happy all summer to see those cute shoes on their feet.

As always, Easter brings special memories of the days that Alex and Julia were born. It's still amazing to think that we've been given two of our very own Easter miracles.

Thank you, Jesus!

MER