Back to school and random thoughts

My little man started first grade yesterday. He was excited to go back - he always does better with the structure and schedule of the school day. Summer vacation is so variable that by the end of it, we're all kind of climbing the walls. This summer my mechanic in training has been extra interested in generators, how electricity works and plumbing construction. Particularly exactly how big an object would have to be to cause a toilet to over-flow. So far we have tried, one hand, both hands together, and a foot. The foot was just the right size. My mother's bathroom has never been cleaned so often.

Cute picture, right? Baby Girl was so very very happy that her brother came home after school. The cuteness couldn't last though. What you don't see is that about 15 seconds later he decided to tickle her - the ultimate in torture - and she tried to kick him in the head. Sibling love, there's nothing like it. This morning I was concerned because it was suspiciously quiet in the front of the house. When I went to investigate, I found Abigial lying on top of Joshua on the floor. He looks up at me - clearly frustrated - and whispers, "Would you get her off of me please? She's not listening!" She looks up, glares, and screams "NO! Uba seeping!" She slaps him on the stomach. "Ah wub oo! Seep!" (Translation - Bubba's sleep! I love you, now go to sleep!) Gee, I wonder where's she's heard that.

Vacation

Two weeks ago Robert and I celebrated our tenth wedding anniversary by taking the kids on our first ever family vacation. You know those ideas that seem brilliant at the time but later leave you wondering what the heck you were thinking? This was one of those. The trip was 90% wonderful – and then there was the Florida heat index of 106. Disney World in July – it makes our local weather look cold.

Overall though, a great trip. Here are some highlights:

Joshua Health Update - finally

April is Autism Awareness Month. While this post probably SHOULD be about Autism – since it’s the end of the month and I haven’t written one yet – it’s not. When Joshua was diagnosed, I was terrified. I didn't know what to expect and wasn't sure how I was supposed to feel. I knew that whatever the “right” reaction was, I wasn't having it. A year and a half later, I can tell you that Autism can be hard – but it’s no longer scary. It’s a day-to-day process of learning how my son’s mind works and trying to anticipate the situations that may occur. But the truth is that it took a long time to get to “diagnosis acceptance” and as of yesterday I’m starting over.

The doctor called yesterday afternoon. Not the nurse, the doctor. In our brief experiences with raising these kids I have learned one concrete fact: if the doctor calls you personally, it’s bad news. If the nurse calls, it’s either good news – or there’s a delay in your test results (that’s a whole different post). I much prefer talking to the nurses - obviously.  But no, this 4 pm call was personally from the doctor. Our test results are finally in after almost 6 months of waiting. The diagnosis is Duchenne Muscular Dystrophy. It’s a big, bad, ugly diagnosis. It’s one of those where looking it up on the web kinda makes me want to sit in a corner and scream. The only bright side is that it is a long-term disease – and lots of research is being done to try to find a treatment.

We've been getting the “How are you doing?” question a lot lately. The honest answer is I don’t know. We’re holding it together and taking each day as it comes. Even as I type this I know that sounds like a cliche – but it’s the truth. Our world looks a lot like this right now:  1.Get up 2.Take a shower 3.What day is it? 4.Run around to get everyone wherever they have to be for that day. Emotional and mental falling apart is  somewhere around item 25 on the list. I’m sure I’ll get there eventually, but right now it ranks somewhere below doing laundry and washing dishes – and if you know me you’re aware that this is pretty low on the list.

If you know us personally, please pray. Pray for Joshua’s body to fight this for as long as possible and for us (his supposedly smart parents) as we try to make the best possible choices for him. Sleep would be awesome too – but once again, that’s a different post. If you DON’T know us, please pray anyway. I truly believe that God hears all prayers even the smallest and simplest. If you don’t believe in prayer, please send good thoughts our way – you wouldn't believe what my God can do with that. J

So this post turned into kind of a whiny rant, if you’re still reading kudos to you. Thank you to everyone who has shown us an amazing amount of support since this started, it’s been a roller coaster.

3/21 - World Down Syndrome Day

March 21^st is World Down Syndrome day. It’s one of those days where the bloggers of the world jump onto the internet to make sure that everyone knows how fantastic the Trisomy* 21 community is. It’s one of those days where I’m guaranteed to smile as I read the stories – seeing bits and pieces of Abigail in all of them. I had this idea that this year I would be one of those writers – yet I’m having trouble figuring out what to say.

The truth is that Down Syndrome is such a tiny piece of how I see my daughter, it makes focusing only on that piece very difficult. Yes, she has 47 chromosomes when most other people have 46. Yes, she’s in an Early Intervention program to give her the best possible chances of success later in life. Yes, she sees a few more doctors than most kids. But to me, to my husband, and to most people who know our story, she’s our wonderful unexpected gift.

 Abigail is my miracle baby – my daughter that modern medical testing said wouldn't survive to the end of my first trimester. She’s the preemie who arrived six weeks too early and got to have surgery when she was exactly 24 hours old. She’s my little fighter who has defied every doctor who has tried to suggest a negative outcome for her health and life. She’s a loving sister who thinks her brother hung the moon - and she’s determined enough to make sure he never leaves her behind. She’s a sharp mind that takes in 1000 times more information than anyone realizes – and who is quickly learning that being cute will get her far in life. But mostly she’s big eyes, a giant smile, and a loving hug at the end of each day.

Down Syndrome as a whole can be a scary topic. But I honestly believe that’s because every person who welcomes one of these wonderful babies into their family is facing the unknown. And the unknown is terrifying. But each child’s future is unknown – regardless of genetics – and every child deserves to be celebrated. On March 21^st our family celebrates Abigail – my wonderful gift who happened to come with a little extra.

*I love that the dictionary keeps telling me that Trisomy is not a word.

Mornings

Morning routines are important. Each family develops their own rhythm, their own flow that works best for them. I know of some families that have mornings down to an exact science with each member knowing exactly what they have to do in order for everyone to leave on time. We are not that family. The only way to describe mornings in our house is chaos. A good day is when the words “We’re going to be LATE!” are only yelled once. This is not to say I’m not trying to find a schedule that works – just that when you have two children who get up 2-3 times each most nights out of a week – schedules tend to be fluid.

So you can imagine my surprise when I woke up in the morning and realized that not only had my alarm not gone off yet but this was the FIRST time I had woken up since going to bed the night before. Most people would probably bask in the glow of a successful night; enjoy having a couple of extra minutes to lounge before starting the day. I am not most people. My first thought – check and make sure they’re breathing! OK, everyone’s breathing – wait for the heart rate to return to normal and proceed with the regular morning routine, doing everything incredibly slowly and quietly as not to wake anyone up.  Twenty minutes later you can guess what happened – yep, I was behind schedule once again. Turns out that not waking everyone up earlier than usual is great – until it makes  all tasks take three times longer than they should and results in everyone being late – again.

In the midst of this terrible realization I heard little feet running out of my daughter’s room. “Mama-mama-mama! Mama-mama-mama!” She keeps yelling until she sees me. Then she stops, grins and points at herself. “I nigh-nigh! I GOOOOOOD nigh-nigh!” It probably says something that she’s so proud of herself for sleeping all night. Like MAYBE her mother begged her to “PLEASE stay asleep tonight!” when she was going to bed the night before. But hey, it apparently worked. Another thing that seemed to work – putting the 2 year old in charge of waking up her brother. I’m sure he didn't appreciate the slobbery kisses wake-up call, but he WAS out of the bed and at the table in record time – AND he managed to get to school a whole ten minutes early. Guess I’ll see what works tomorrow, the baby may have a new job as an alarm clock.

An unexpected gift

The past couple of weeks have been interesting. Christmas passed with a level of excitement and anticipation only possible when you're small. Watching the kids' eyes light up as they took in all of the Christmas lights and pretty packages made it almost possible to forget the logistical nightmare in wrapping those same packages. The respect I have for my parents grew exponentially this year as I tried to figure out how to wrap a bike and realized some of the various shaped and sizes they'd successfully camouflaged over the years.





New Years taught us the valuable lesson that it's best to have the children asleep BEFORE the fireworks or they may not sleep at all. Abigail displayed her growing vocabulary and yelled "BAD BOOM!" every time a rocket exploded outside. And then last week it snowed. Nothing like what the rest of the country is getting - but enough to shut down the state for 2 days and give Joshua the winter wonderland he was so desperately craving. He loved it -and is very annoyed that it had to melt. Abigail on the other hand - not impressed. I'm not sure which was worse for her - the cold, or the many many layers I made her wear before we ventured outside. 





This past weekend the family got together to celebrate my grandfather's 88th birthday. After a year of unexpected and very serious health challenges he is finally mending and we were ready to celebrate. Unfortunately, my youngest was not in a party mood. She was whiny, irritable and wanted nothing to do with anyone who wasn't her mother. But out of this came the best gift I've received in a long time. At one point she refused to look at the waitress - just kept shaking her head "no" and pouting. The waitress asked me "She's about 2 right?" When I confirmed this, she just smiled and said "I have a 2 year old at home, don't sweat it -that's perfectly normal." After 2 and a half years of being asked "what's wrong with her" and hearing "well, for a baby with Down Syndrome she's doing great" and my favorite question "So will she grown out of this?" - it was unbelievably special to have her treated like just another whiny toddler. To have someone else see her for who she is - a perfectly normal little girl, who just happens to have a little something extra. I'm trying to remember to carry that simple sentence around and pull it out the next time she's driving me crazy. It will remind me to cherish every temper tantrum and ear-splitting "no!" that comes my way - because it means that she's 2, she's learning independence and to share her opinions - just like everyone else.