Our Great Floridian Adventure

We've been in Florida now for 10 days and I FINALLY have time to sit down and write. It has been a long, exhausting, sickly, good time down here in the sunshine state.

First of all I would like to give a shout out to my boy Jacky Jack. He was totally amazing on the plane ride down. After getting him up at 4:30 a.m., putting him through security, flying 2 hours to Denver, a long, boring 3 ½ hour layover, another 4 hour flight to Orlando, rental car pickup, and 1 ½ hour drive to Vero Beach, the kid had every reason in the book to have numerous meltdowns. But he didn't. It was such a wonderful shock considering that he has spent the last month in misery trying to get his last two second molars in. Instead of having one of the worst days of our lives, we had a relatively easy day of travel. For the first time Jackson was able to actually sit up in his seat (he even had his seat belt on) so we were able to put the Ipad on the tray table, put on his favorite cartoon (Dinosaur Train), feed him and fly toward our destination. The only down side is that he has gotten so big it was hard for him to get comfortable and lay down between us for a nap. For not having a nap all day, he was amazing! We arrived at the grandparents house exhausted but overly pleased.

Two days later we woke up to Jackson's screams. When I rolled over to comfort him, he was on fire. Kevin got all his clothes off and ran him outside while I gave him ibuprofen and got him some cold water. We then brought him in and took his temperature – 103.5! We took his diaper off and let him roll around naked and I began taking his temperature every ½ hour. Jackson fought the fever for about 24 hours reaching a high temperature of 103.7. We obviously knew he was fighting off something but had no idea it was about to attack us all. Before we knew it Jackson wasn't the only sick one, his mom, dad, and grandpa all fell victim to the cold virus. For the most part Jackson has been in pretty happy spirits. But we did have one night when Jackson would not go to sleep. He began screaming around midnight and nothing worked to comfort him. Around 2 a.m. I was at my wit's end. I knew something was wrong with him but I didn't know what and I was ready to go to the emergency room. We tried feeding him before we left thinking maybe he was just hungry. He didn't really seem interested in the food and threw most of it up. So we packed up and headed for the hospital at 2:30 a.m. Once we got in the car Jackson stopped crying and relaxed. By the time we got to the hospital he was fine again. We opted to not go in but head back home and see if he would sleep. Sure enough he did. We never figured out what was wrong, maybe he just wanted to see what it was like to drive around in the middle of the night. In case you were wondering, it's a ghost town at 2:30 a.m. in Vero Beach, Florida.

Despite being sick and tired for the last 10 days, we've also had our highs. Spending time with Kevin's parents has been one of them. They absolutely adore Jackson and just having him in their house makes them smile with joy, which is priceless. Jackson's high has been going for walks on the beach. He LOVES the ocean and is so happy when we go there. Yesterday was particularly windy and if you know Jackson, you know he loves the wind. He was so excited he couldn't hold still and I thought he was going to lunge himself out of the stroller from his wiggling with joy. It's these little weird quirks about Jackson that just make me laugh and make me realize how lucky we are to have a different kind of child. I've had a few highs myself. I almost cried for joy yesterday when I caught a glimpse into Jackson's mouth and saw the last two molars had poked through. It was a Christmas miracle! I had a feeling they may have poked through as Jackson has gone back to being pretty happy and wanting to cuddle up with me again. He hasn't been very lovey dovey towards me for the last month because I think he has sensed my frustration and rattled nerves with the teething. But my biggest high has been that Jackson has acted happy to see me on a few occasions. This is something that he has pretty much only done with Kevin. The other day on the beach Kevin was pushing him in the stroller and I ran up to the side of the stroller and said “Hi Jackson!” He turned towards me, smiled, wiggled a little and reached out for me. That was the first time he ever did that. It was beautiful!

Another high is being around Kevin's family. Kevin has an aunt (who lives one house down from his parents) and 4 cousins who live here in Florida. They all get together at Christmas and last night we went over to see them. It's so heartwarming to me to see all of these people love my son so much. It seems to me like it is a different kind of love they have for Jackson, a very special kind. They never look at him like he is different, they are all interested in his progress and development, they want to be around him and last night showered him with wonderful Christmas presents. I think if Jackson was your neurotypical child he would not mean so much to people. My special son is certainly a special gift.

Hmmm it appears that I have more highs than lows. When I sat down to write I was sure I had more lows than highs. It's amazing what happens when you start focusing on the good things. I suppose on this Christmas day when I am missing my Dad pretty bad that maybe I should focus on the highs. Maybe we all should. Merry Christmas everyone!

On a side note for those of you who read my blog and have a disabled child, if you are flying on Southwest airlines, go up to the counter before boarding and tell them your child has special needs they will hand you a blue boarding pass. This little blue boarding pass allows you to board the plane first before all the other passengers. It was wonderful getting the seats in the front for a change!

What I'm Most Afraid Of

I belong to this online group that is for parents of kiddos with PMG (polymicrogyria) which is part of Jackson’s condition.  It’s a great group with members from all over the world and there are often a lot of interesting discussions.  The most helpful thing is that it makes me realize that there are other parents out there going through some of the same stuff we are.  But more often than not, these parents are going through even more than I can imagine.  A lot of the kids with PMG have epilepsy because of the brain malformation.  There is a lot of discussion in the group about monitoring units in their children’s bedrooms so they can hear if they are having a seizure.  There are parents that sleep in their child’s room and/or bed so they will always be there.  These parents often talk of how exhausted they are from the lack of sleep.  Not only can’t they sleep comfortably but they are afraid to sleep because they fear their child may have a seizure in their sleep and die.  A difficult glimpse into the extraordinary lives of parents of special needs kids. 

A few weeks ago a woman posted that she had lost her child the night before.  She was telling us to hold on to our children and be thankful for every day we have with them.  Her child died from SUDEP, Sudden Unexplained Death in Epilepsy.  It’s how John Travolta’s son died.  They have an extremely intense seizure that kills them.  I have to admit that since we discovered Jackson was having seizures in his sleep in October I have been more wary of every little sound he makes at night.  Yesterday he slept until almost 11 a.m. and around 10:00 I turned the monitor up all the way so I could hear if he was breathing.  When I don’t hear him for a few minutes my heart starts pounding and I start thinking he’s dead.  Then a few minutes later I will hear him and I relax.  It may be irrational, there may be nothing I can do about it, but it’s my biggest fear - Jackson has a seizure in his sleep, he dies and I find him the next morning.  I don’t spend a lot of time dwelling on it, you just can’t.  But it is always there in the back of my mind.  While I’m terrified of him dying, I’m also scared that Kevin and I may have to take care of Jackson until the day we die, and I worry endlessly of who will take care of him after Kevin and I are old and gone.  

There are so many things I think of these days that aren’t what I imagined I would worry about when I thought about becoming a parent.  But I suppose that is what being a parent is about, the unexpected joys, surprises, and worries.    

Demons

Some of you know that Jackson is currently getting his last two second molars in.  To put it mildly it has been a freaking nightmare.  They bottom right one has been coming in for like a month.  I look in his mouth every day and I can see the tooth right under the skin but the damn thing won’t pop through.  We have had days of non-stop crying and nap refusals.  Another one of those “joys of motherhood” things, right?  So last night I was watching Eat, Pray, Love with Julia Roberts.  Awesome book by the way, movie was so-so.  There was a part in the movie where Julia Roberts is standing there watching this healing guru in Bali treat a screaming baby.  His wife is standing next to Julia Roberts and she says “Child tormented by demon.”  The guru rubs something on the baby’s gums.  Julia Roberts says “It looks like teething.”  The wife looks at Julia very seriously and says “Same thing.”  I had to rewind it and watch it numerous times because I was laughing hysterically.  I agree, demons, teething, same thing.  So of course today Jackson was screaming and sticking his fingers in his mouth and I started yelling “Go away demons! Leave Jackson alone!”  Jackson looked at me briefly, gave me a funny look, then resumed his screaming.  Obviously it didn’t work, but it really made me feel better.  So if you see me sometime in the future yelling at Jackson about demons, I haven’t lost it (yet). 

Family Outings

Thursday night Kevin, Jackson and I went on the Coeur d’Alene Christmas Light cruise.  It was a gift from our realtor and I had been looking forward to it for a few weeks.  I don’t know what I was thinking!  We were trapped on a boat for two hours with a screaming, miserable little boy named Jackson. 

When I was pregnant, well actually probably even before, I had all these beautiful visions of what it would be like as my child grew up.  I wanted to do all the fun activities with him/her that I either did as a kid or wanted to do.  Things like family bike rides, skiing together, driving around looking at Christmas lights, going out for pizza, bowling, roller skating, unexpected trips to Baskin Robins, you get the idea.  I couldn’t wait to explore the world with my child.  Then Jackson was diagnosed and I realized I may never get to do those things.  But in just doing our day to day thing, sometimes I forget he isn’t your typical child.  I know that may sound weird but it’s true.  Jackson is my little 2 ½ year old.  He loves to eat, he likes to watch cartoons, he likes shopping at Costco, he is sometimes cuddly, sometimes he pushes me away when I try to kiss him, he gets excited when his Daddy comes home from work, he likes his cat Bella, he is ticklish.  Just your typical 2 ½ year old.  Only he’s not.  Jackson is a creature of habit.  He likes to be home.  He wants to eat in his highchair, roll around on the floor and sleep in his crib.  New places, situations and people are sometimes a little bit too much for him, which leads to screaming meltdowns.  I know this, but sometimes I just forget.  I just want to go do stuff with my boys, have some family time and expose Jackson to fun things, but that isn’t how Jackson operates.  As we were trapped on the boat out in the middle of Lake Coeur d’Alene I said to Kevin “Why did you let me take us on this cruise?”  He replied “I thought you had a plan.”  Well I didn’t.  I’m not sure how to.  That’s the hard part.  How do you plan for a two hour meltdown?  My only plan now is to avoid any situation that may cause Jackson angst.  Except for that 6 hour flight to Florida we have in a few days.  I know someday Jackson will be ok with new situations.  I don’t know when, but someday we will try new things without it being a dismal experience .  Maybe in a few years the misery of the cruise will fade and we can try it again.  All I know is that the minute we got home and put Jackson on the floor with his toys, he was the happiest little boy in Spokane.  And that is how I want him to be, happy.