In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
And the Mother of the Year Award goes to . . . . . ME!! Yep, I've definitely got it. You know that little issue of breathing my son has? And those all important medications, especially the newest inhaler we added? Yeah, the one that's made the huge difference since we discovered that his asthma wasn't being well controlled at all. That one.
The one he's supposed to have.
Guess what! We ran out of it. And I discovered it on Christmas morning! Oh, joy. I knew it was a little lower. And that morning when I went to give it, I thought, maybe I ought to check how many puffs are left. Zero. Not just one zero, three zeros. Zilch, nada, zip. No medicine.
That's okay. I always have back-ups. I try to keep extras of everything on hand because you just never know. Um, but apparently not this time, not this med. And not only is the pharmacy not open on Christmas, it's not one they usually stock. It was Friday morning before I could pick up more.
Now, I don't know why it was gone. Even if we hadn't been in the hospital in November, I shouldn't have run out before the end of the month, the very end. But that's neither here nor there, because it was gone.
The med we did have.
Fortunately, I did still have his previous maintenance med, the Flovent. The difference between it and his new one (Advair) is that Advair also has an albuterol component in it. So we went back to the Flovent and figured we'd probably have to do some rescuing during the time. And I was right.
Let me tell you, until you've stood over your child, giving a breathing treatment and saying, "Breathe, Kid!" and watching and praying that those oxygen sats start coming up, well, let's just say, it's a whole different kind of "rush." And frankly, while I'm not thrilled when my other kids' grades are hovering in the low to mid-70's ('cause I know they can do better), I'm much less impressed when Aaron's sats are there.
His rescue med, helps my breathing, too.
But we've got it now, and I think he's recovering from his mother's brain lapse. I did have to rescue him once more today, but he recovered really well. And while I pulled some really thick, nasty colored junk out of his trach at church, he's pretty happy and vocal in there right now. (Vocal is good, that means his throat's not swollen. That happens to all of us when we get sick.)
So onward and upward. I've labeled all his inhalers with dosing instructions in permanent marker. I'm hoping that's where things went wrong. Not sure what else it could have been, so I'm opting for the "honest mistake" possibility.
And I'm grateful that I had the education on how to deal with it, and he didn't suffer more because of my lack of oversight. And thankfully, life goes on.
As long as the world is turning and spinning,
we're gonna be dizzy and we're gonna make mistakes.
Christmas has come and gone. Or at least the wrapping and hustle and bustle seems to have. Today's been a quiet day, even more so because since many insurance adjusters took Christmas Eve off, I've been given today off. I guess that's the upside of a demand driven industry. Sometimes there's very large amounts of work (like the past few weeks) and sometimes you get more of a break. At least it's not boring, right?
Anyway, this year was another good one. I still need to put out a family newsletter. It's one of the ways I keep track of what's happened in our lives.
The big highlight yesterday was talking to David and Mary. They sound so happy! Most of the time I do just fine with them being gone. I think it's a product of several factors. They were already at school for a while before they left, so it wasn't as if we weren't used to them being gone. And there's the matter of preparing for another, longer, much more permanent "good-by." Plus, I know they're good people, they've been taught, and more importantly, learned well. It's said that a mother's job is to put herself out of work. I think they've got this one.
But, at Christmas, it's harder. I had to laugh when prepping stockings that it felt like there wasn't enough, I didn't have enough to do because there were only nine and not 11 to fill. It really did feel like I was forgetting something! And putting things out was also odd. Usually, William's and mine go under the tree since the kids take up all the couches and chairs. This time, we got the loveseat.
Each child has a Christmas bear from Grandpa Bear and Grandma Wiess, and that marks their presents. But this year, David's and Mary's really didn't have anyplace to go. So I set them behind the nativity scene. I think it was appropriate, and it made me feel a little better. Symbols of my children with symbols of the Savior that they have dedicated this time in their lives to.
Overshadowing all of this was news I received on Christmas Eve. See, Death doesn't take a holiday. He knows no calendar. On Christmas Eve, a friend's son went Home to have Christmas in Heaven. And he wasn't the only child to pass in the last week. They are now free of pain, but their mother's anguish has been magnified. A poignant reminder that this is NOT our home, our ultimate destination. And I thought of many other friends who have decorated graves of little ones instead of their stockings. And once again, I am overwhelmed and in awe of the goodness of our Lord. He knew this life would bring heartache and pain, but through His love, it doesn't have to end here.
And I think that is the true Christmas miracle.
May the spirit of Christmas bring you peace, The gladness of Christmas give you hope, The warmth of Christmas grant you love. ~Author Unknown
I keep meaning to post, to write, to whatever, but life (yeah, that crazy thing) keeps getting in the way.
I want to put up a post on how I made Aaron's weighted blanket for almost nothing. He LOVES it and the nurses and staff at Primary's raved about it.
Today, I borrowed an idea a friend put up about "snow tires" for wheelchairs and in about 5 minutes made Aaron's wheelchair much safer and easier to handle on the snow.
BUUUUUUUT, there have been concerts to attend (wonderful!) and bread to make for teachers and nurses. Plus, since I didn't ask for time off last July (seriously!) I still have to work. And someone forgot to tell insurance adjusters that they ought to take some time off. Instead, I think they're working overtime, so I have had HUGE work loads. At least it'll make for a better paycheck, right?
So where's this going? (I'm still behind, you know.) Well, this afternoon, I took a quick break to plow through some emails that have been sitting. I clicked on one, just to check it out before deleting it, and found that a picture of Mary and Aaron that I submitted had been selected to be part of a Christmas slide show the Mormon Church put together.
What a tender mercy. As I stopped and took just three minutes to watch this video, I felt the Christmas Spirit fill my heart. I relaxed and let the love flow in. And I remembered, remembered what is REALLY important.
Yeah, I still need a minimum of 30 hours a day to get done what "ought" to be done. Work is still piling up and nothing has been wrapped for Christmas. But that's okay. What will happen, will happen.
I remembered how sweet last year was, the last time we get to have all our kids home for Christmas for many years. And precious Mary helping Aaron open his presents. See, with his challenges, we don't know how many more we get with him. And this last year has been pretty rough on his health. This is a picture that I will always, ALWAYS treasure. And now we get to share it with the world.
So sit back, and take three short minutes to let the Spirit of Christmas fill your heart. You might find yourself smiling a little bit more, too.
Christmasis not as much about opening our presents as opening our hearts. ~Janice Maeditere * It seems that not everyone's browser downloads the video. So here's a link that should take you directly to it.
Okay, so I almost always find time to write on Sunday. Not this last one. I was grumpy, cranky. I mentioned to a couple of different (pretty close) friends that I just couldn't write that way. They both told me that was a great time to write. That no one believes I ever get grumpy.
Um, I think I can hear a couple of my kids laughing about that one from several hundred miles away. Not to mention my siblings and my parents. I haven't even mentioned those conversations to the ones that live in this house. Not quite ready for the chortles and falling down in disbelief. Yep, I can do grumpy really well.
The back yard
See, I'm not real fond of winter. Not thrilled with snow. Downright dislike the cold. Yeah, I know I split my high school years between Alaska and New Jersey. Neither of those places is known for balmy winters. But this is the time of year I have to keep reminding myself that I willingly left California because we were just too cramped there. This is when I have to remember that all of us squished into a home smaller than my basement would be a bit tight. And winter, while a bit later in coming, has shown up with a vengeance.
Part of our driveway.
See, I actually am okay with snow, if I can sit inside watching it, while reading a novel and drinking hot chocolate. But that's not in the cards for this girl's life. We have a big driveway, five (as of today, four, one broke) snow shovels, and a child that needs to have safe passage in a wheelchair. So guess what I found myself doing Sunday morning. And to top it off, it had been COLD! Like, the kids will count down the temperature on the car as it goes from the garage (23 degrees) to the school (4 for the early morning high school run, only 2 by the time the junior high kids went). And it's stayed cold, All. Week. Looooooong.
Add to that, I had to drop out of our Christmas choir. See, they ask that you don't miss more than two
rehearsals, three is the very outside. I missed my first when I went to help my mother-in-law following her surgery. No biggie. I wouldn't be missing any others. Then I got sick, over a Sunday of course. Then Aaron spent two more up at the hospital. I probably could have pushed it, and they would have let me in. But I didn't feel comfortable missing so much rehearsal and being confident in my parts. So yeah, grumpiness abounded.
But a friend has inspired me to do some "work" in my own head, to look inside, to find the joy in the moment. To see that all things work for our good. And it has been work. I've had to look hard and actually physically do things to help me get out of my slump. Sometimes things I had no desire to do, in the beginning at least.
The kids saw Santa at the church Christmas party on Saturday. It was nice, but I wasn't thinking too much about it. Michael tried to ask Santa for an iPod. Yeah, like that's going to happen. Bless him, Santa told him he'd have to have a talk with Mom and Dad before he could promise that one.
Not sure what Andrew asked for, but Santa had fun tickling him.
But when I handed Aaron over, Santa was very still. He looked at me with the warmest smile, and then at Aaron. And said, "Aaron, it is such a privilege to hold you." And he even made a point to tell me later how grateful he was that I had let him do this. Wow, really touched me.
We put up the Christmas decorations (late, I'm sure that helped play into my nasty mood). The stockings are hung, and two aren't up. That tugged at my heartstrings a little bit.
But all the bears are out, every one accounted for. And yeah, they're kinda jumbled up, with the Nativity scene having been played with. But that's pretty much par for our lives, so that's okay.
The poinsettias aren't quite as nice as when Mary and Jonathan have done them in the past, but they still look pretty good. And Aaron's angel tree is decorated, with a butterfly on top for his angel friends.
Tonight, Andrew and Michael and I made candy sleds for a "store" project that the 5th grade does. I'm afraid I haven't been a very good mom about this in the past. Andrew's the 5th child we've had do this. I think the other kids were pretty much on their own. One of them sold "desk clean-out services." Yeah, I guess the 5th graders had similar feelings about their desks that my kids do about their rooms. It didn't sell so well.
And I didn't much feel like doing the project tonight. But it was important to Andrew, and once I got into it, it was actually a lot of fun! And they even turned out really cute! The "work" is working.
Then I went to do Aaron's cares. I have no idea what was so funny, but this kid was busting up. And any doctor out there who thinks these kids are vegetables? Well, let me just invite you over to help with those cares! If he's a vegetable, it's some kind of crazy Mexican jumping bean!!
And I'm starting to find it again, the peace and comfort I know is there. It's not all rosy. There are still going to be issues, challenges. And I'm going to have to work on that, hard, probably every single day.
Like I said, I don't do winter well. The dark and cold have a way of making me feel dark and cold. But spring will come. And in the meantime, I have a warm home, a wonderful family, and even cars that warm up (eventually). And I'm not the only one out there wielding the snow shovel. So we'll make it work. After all, isn't that what life is about?
I may not be there yet, but I'm closer than I was yesterday.
We're home, and apparently just in time. There's a big snowstorm blowing in tonight (which will make Aaron's asthma oh so fun) and about a million things going on here.
The next couple of weeks are full of medical-type appointments, but the funny part is, I don't think even one is for Aaron. Joseph had fillings today, Matthew has a dental check-up Friday, and Jonathan sees an oral surgeon on Monday to see if he needs his wisdom teeth out (or if they're even there!). Next week, Joseph has a follow-up from his tonsillectomy and Michael gets to go meet Aaron's plastic surgeon.
Yeah, that's a fun story. Seems that on Friday, he, Matthew, Joseph and Andrew were playing football in the backyard. Michael went to tackle Joseph, Joseph moved out of the way, but the rock wall stayed put. Michael vs rock wall. Rock wall won.
I got a call from William saying that he had a gash more than an inch long and very deep on his cheek and assorted other abrasions. They came up to Primary's for the stitches. Plastics was in surgery when they got here, so all in all, it was about five hours before he was sewn up. And while the edges came together well so it was bleeding badly when bandaged, when they took the bandage off, it flowed freely. Yeah, it was pretty bad.
Add in carpools for school and other activities, plus I haven't even started decorating for Christmas, well, I don't think there's much chance for boredom to set it.
Please, please, keep Aaron in your prayers. He's still not 100%. We're still going to be using his albuterol and he'll be on higher oxygen amounts for the next little while. I think I've had enough of our vacation home in the north.
Love the Christmas season. Even love the snow, when I can sit inside, read a book and drink hot chocolate. (Don't think that part will happen right away.)
There is nothing like staying at home for real comfort.
So yesterday we almost had our walking papers in hand when he started acting up. Little higher heart rate, higher oxygen needs, soggy face, you get the picture. So we decided to watch and wait a little bit longer. I had some things that needed to be taken care of at home, so I left for a little while.
Just before coming back, I called up and spoke to the nurse. Should not have done that. It jinxed us. Everything was going great! No issues at all. Happy and playful or sleeping peacefully the whole time.
I knew by looks on the faces when I got here that something changed. That plus the respiratory therapist was standing in the doorway taking off the cover gown and gloves (used to keep his germs from traveling with her to other patients' rooms). And it was exactly halfway between his treatment times.
He'd had a big mucus plug in his lungs, dropped his sats, and ended up on ten liters of oxygen. Yes, again. He was coming down when I got here. It was either six or eight by that time and he was doing well, but yeah, it kinda put a crimp in things.
Then he did it again this morning at 7:00. Plus he's got some really thick, copious, nasty snot in his nose. But in between these episodes, he does pretty good. Like one to three liters, happy, smiley good.
So the big question is: is this the last hurrah for his cold, just going out with a party? Has it turned bacterial (that one's got my vote, antibiotics and we're good to go, right?)? Or has he picked up something new all together? All are distinct possibilities. And he's not telling which one it is.
Not sure where we go from here. If he doesn't do it again, I may take him and run tomorrow. If it crops up again, I think we'll look at repeating labs and tests. And we'll keep on plugging on.
Fall seven times, stand up eight. ~Japanese Proverb
