In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
It's been a busy two weeks. Soccer games, last day of school, start of summer, you know, the good stuff. We've also dealt with asthma (a LOT!) and a cold. I've started in on some of the things that were put off while working, and maybe I'll get around to posting about them some time, or maybe not. Sorry, that's just kinda how life is going right now. I get these awesome (in my own mind) thoughts about posting and then it just doesn't quite make it out of the brain and into reality.
Cutest elephant in the jungle.
Anyway, here we are. And "here" is back in the Hotel on the Hill. NOT in my plans for this weekend, at all. I mentioned he'd caught a cold. We started seeing signs of it on Monday, but really, he weathered things pretty well. Thursday afternoon was rough, really rough, but again, we managed to make it through with lots of suctioning and albuterol, and a few bagging episodes. Thursday night was okay, and Friday was much better. So I figured we'd take a few extra precautions and heading out on Saturday would work.
Saying goodby to a beloved teacher who is retiring.
Initially, it did. William's mom had asked him to take flowers to various family member's graves in three different cemeteries. We started in mid-Salt Lake and then moved to the Salt Lake Cemetery with plans to continue on to Logan where his Dad's family plot is. He needed a little more oxygen after an hour or so, but nothing too out of the ordinary, so I didn't even give it a thought except to revise how soon we'd need to switch O2 tanks. I had plenty with us, so no problem.
But then we stopped for hot dogs before leaving Salt Lake. And Aaron must have looked out and realized how close we were to one of his favorite places. All of a sudden, he was in the 70's instead of high 80's. I did some interventions, and nothing. Did a few more with the same results. I switched him back to his ventilator in hopes of opening him up a bit. Um, yeah, try 60's instead of 70's. (Someone wasn't reading his script.)
View from Salt Lake City Cemetery
So I pulled out the bag and started bagging him. It still took about 15 minutes to get him back into the mid-80's. I told William he needed to drop us off at the hospital and continue without us. Andrew took over bagging while we drove, kinda like he did just over a year ago. He's a pretty awesome big brother.
Hanging in the ER.
Once we got here, they called a "red patient admit" again. Hate hearing that, and knowing that means they're rallying the forces 'cause he's in trouble. Glad they're all there, don't get me wrong, hate that they're needed urgently. It still took a while (probably only 15-20 minutes, but still) to get him stabilized. Did x-rays, ran labs, it looks like the rhino is still the culprit, although he's really not too symptomatic.
For a while last night, it looked like he might end up on the higher hospital vent with a percentage of oxygen flowing instead of the rate of oxygen that we use, but he did manage to avoid it. He had a pretty good night. In fact, the team is pretty certain it's time to send him to the floor. I'm very leary of that plan, and I've weighed in. They still want to move forward. I guess we'll see what happens, right?
Life keeps throwing me curve balls and I don't even own a bat.
One week apart, and yeah, the first one was earlier.
I've had so many thoughts about Mother's Day this past week, where to take this post, what to say.
My sweet husband orchestrated a very thoughtful lead-up to Mother's Day. Every day for the past 9 days (yep, nine kids, count 'em) I was given an envelope with a personal note from a child. Even my missionary in Canada sent one, and somehow I missed it coming through the door. Probably something to do with the craziness of my life lately that I missed the return address on a personal letter addressed to his dad.
I felt the love, and the reality. I even teased my 13 year old about his. He wrote a delightful poem in which he told me twice I was "the bomb." Now, I know that's used as a wonderful endorsement, but I did ask if that was because I was always "blowing up" lately. He grinned.
Anyway, back to life. I'm going to be real here. There's been some work going on in between my ears lately, hard work. And so much more to be done. It's been a rough week. Okay, a rough few months. Aaron is as happy as ever, but his body isn't quite as cooperative. I've been sick, a lot. I've missed out on so many things, sometimes because he's not stable, sometimes because I can't take the chance of passing along whatever the latest goo is that I've had. And it's hard. I miss being with people, I miss my friends. It's hard to tell my kids that yep, once again, something's not going to happen because we just can't take those chances with Aaron.
And then there's today. I got up and my nurse (fabulous nurse!) gave me report. He said we'd call it a "win" because we were still at home, and not in the hospital. Aaron slept all night last night, but he was still battling oxygen sats. When he's asleep is when we gain ground. Not last night. Nine to ten liters all night.
On Facebook, I found a sweet girl who lives down the road was LifeFlighted last night. Now, the paramedics in our area are all Advanced Life Saving certified, and they're all familiar with trachs and vents and such. They don't LifeFlight on a whim.
A woman at church who is battling her own set of challenges stopped me and laughed and talked about how God uses our situations to teach us patience. I think in my case, He knew he needed a 2x4 to hit me over the head with.
This thing we call life is HARD! Really hard!! And sometimes it hurts. Sometimes we feel left out, alone, abandoned, like no one else quite gets it. And frankly, they don't. But that's okay. And that's my new mantra, my new song, literally.
Piano Guys has a song, "It's Gonna Be Okay" that puts it all together. They don't paint a picture of roses and sunsets. It's real, it's raw. Yeah, "doubt is a broken record that plays inside my head," "So many times now I was supposed to tap out, all the walls would fall down around me." Reality.
BUT it's going to be okay, really. "No matter what [I've] been through, here [I] am ... no matter if [I] think [I'm] falling apart, It's gonna be okay." Yep, it is. Love the saying, "My track record for getting through bad days (weeks, months, years?) so far is 100%, and that's pretty good."
So I'll keep on working on those thought processes, work on remembering who I am, what I stand for, who I'm in this fight for. It's gonna be okay. And if you need help, too, listen to the song, turn the volume up high, and dance like no one is watching. (And if they are, maybe they'll dance, too.)
It's a taboo subject, one we're afraid to talk about. It's almost like if we don't give it voice, it can't exist.
But it does. It's real, and the silence only serves to deepen the pain.
I've now been to more funerals for children than I have for adults. It feels wrong, it hurts, and I admit, it's scary.
I love these parents, these souls who've given back their most cherished hopes and dreams. I watch them, knowing that someday I'll be part of that awful club that no one ever wants to join, and knowing that when I do, they'll be there, waiting to hold me, mourn with me, and tell me that yes, somehow, inconceivably, life does go on.
Chances are good, better than good, that you know someone, a mother, who no longer can reach for her child. Someone who won't get a phone call, email, or hug from their child next week on Mother's Day.
In the past week alone, two friends have joined this sorority. One knew ahead of time, like I do, that her time would come. The other did not. Both grieve, and I ache that I can do nothing to help. And even when you know it will happen, no matter how much time you had, it's never, never enough.
Reach out to her, say the name. Let her know you haven't forgotten. One of my biggest fears is that after Aaron passes on, his memory will, too. He won't have children and grandchildren to tell stories about him. He won't have a wife who will miss him.
When you lose a child, you lose a future. So take a risk. Yeah, she'll probably cry. But you're not reminding her that her child died. She knows that, she knows that in ever single fiber of her being.
You're reminding her that her child lived, and you remember.
There is no footprint too small to leave an imprint on this world.
Last January our cardio surprised me with the idea that Aaron might possibly be a candidate for fixing his heart. Obviously it was not without risk, huge risk, but still, worth considering.
On Tuesday, hopes were pretty much dashed. Echos, or ultrasounds of the heart, are used to estimate pulmonary pressures. You know, the pressure between the heart and lungs. Aaron's single biggest challenge. While not exact, his echo looked pretty much like all his recent (meaning last few years) echos.
So then we looked back at his last heart cath from two years ago. That gives exact numbers. And those weren't great. In fact, as far as surgery options, they were downright bad. There are some numbers called "wedge" numbers. If they were to do a heart cath on most of us, ours would be about a 2. For surgery, they like them to be 5 or less. Aaron's were between 9.2 and 9.75. Yeah, not quite within range.
We will do another heart cath in July or August, but they don't expect the numbers to be optimal. At this point, I think I'll be happy if they're not worse.
Whadda ya mean, I can't "help"?
I don't know that we would have opted for surgery. You know, that whole "huge risk" and everything. Could he survive the first surgery? Could he handle the lower oxygen sats that it would cause? Could his lungs relax further so he could have the second? Could he survive that? You can see where this is going.
But on the other hand, fixing his VSD would allow him to someday possibly (probably) get rid of his oxygen tanks, and his ventilator. The freedom that would bring would be incredible! No longer would we have to measure outings by battery life and tank limits. I wouldn't have to carry an extra 25 pounds or so of equipment. He wouldn't have to be tethered to tubes (although he doesn't seem to mind them).
Having fun at brother's play, "Peter Pan."
Our own little "lost boy" who will
"never grow up."
In reality, not much has changed. We've been told for almost 7 years that surgery wasn't an option. I sometimes wonder if in the beginning it wasn't his heart as much as it was his T18 diagnosis. I think there was a time when it might have been a possibility. I know that in his lifetime, doctors at our hospital have argued for and won the case for surgery for others in similar situations. He's taught some wonderful medical professionals about the possibilities for joy and life and created some powerful advocates.
But the truth is, he won't be able to benefit himself.
Years ago, my father flew rescue aircraft with the Air Force in Alaska. Their squadron motto was "That others may live." I guess in a way, it might be Aaron's as well.
“I suppose it's like the ticking crocodile, isn't it?
Lately, it's become a "thing" to put up a Facebook post saying "What's the one thing you wish people knew about you?" It's not a bad idea, but as I actually pondered this one, I figured no one really wanted my to hijack their post, and they probably weren't looking for the things I was thinking.
Warning, this is one of those "therapy" type posts, and it's likely to be rough, maybe even a bit ugly. And no, I don't need an intervention. But sometimes, I think people look at our lives either as a jail sentence, or as if we're up on some kind of superhero pedestal. Frankly, neither is true. Mostly, special needs moms are just moms like any other mom. We do what we have to, learn what we need to, and fight like dragons to keep our children alive.
When we got Aaron's diagnosis, I had no clue how to do this special needs life. None at all. I was scared that he would die, and scared that he would live. The only "special needs" I'd done up to that point was more along the lines of honors and AP classes. I had no idea where to turn, what resources were out there.
And sometimes, I still feel like that unsure, timid mom. No, I don't wonder where to turn. I've figured that out. But it's more the things that come up. When he's alarming over and over, I worry that I've missed something, and even more, that I haven't missed something, and there's nothing that can be done.
People tell me I'm so confident, organized, energetic, "got it together." But a lot of the times, that's just not true. I worry, second guess myself. I worry about everything, seriously, EVERYTHING.
A look in my cupboards and closets will tell you that "organized" might cause laughter among those who live in my home.
And "got it together"? More like "fly by the seat of my pants."
I miss a lot of things. Lack of energy, lack of time, sometimes lack of motivation. Sometimes it's lonely. Really lonely. Other people really don't "get it," what it's like parenting a child like Aaron, and parenting typical children and their needs along side of an Aaron.
But then there are the really great parts, too, and the funny ones. Like when your kid can keep his cool and force air into his brother's lungs for 30 minutes, and can't figure out why anyone thinks it's something out of the ordinary. Or another one looks at the pulse/ox monitor and figures since he's feeling pretty good, the 86 must be his oxygen saturations. Had to break it to him that if his sats had been 86, no way the ER would have let him go home. That was his heart rate. His sats were 94.
So where is this all going? I guess it's just this. I'm a mom, just a mom. But a mom who's had to learn a whole lot more than she ever thought she would.
I speak medical fairly fluently, but I also speak heartache and joy. I employ more filters than I used to, maybe because I've been around those who haven't, and I've learned it hurts when people don't think before they speak.
Before Aaron was discharged from the NICU, we had to do a newborn CPR class, and I nearly lost it. I just couldn't imagine breathing for my child when he couldn't. Yeah, that was the part that broke me. But now, I do, his siblings and dad do, and my nurses all learn as well. And other than wondering how far it's going to go, how long we're going to have to do it, it doesn't bother me (much).
I've faced down and gone through thought processes I NEVER imagined I could. And I've come out broken, but stronger, for them. I was talking with someone about funerals etc today and they asked me how I knew so much about the ins and outs. I reminded him we'd been looking at one for seven years now. Doesn't mean it's easy, just means I've had time to become educated.
So I guess what I wish people knew was that I'm just me, sometimes overwhelmed, insecure and short-tempered. Sometimes all put together and relaxed. Not a superhero, not someone to be pitied. Just someone trying her best (most of the time) and hoping to leave the world a little better than she found it.
And if this has been too long (yeah, I tend to ramble, I know), just watch this brief video. But go all the way through. I can connect with so many of these scenes, somehow especially the one in the parking garage. But I also know the strength of wiping the tears, believing, and moving forward. Because as long as there's life, there's hope. And that may be the strongest medicine of all.
This week's been a rough one. Between the hospital (kid apparently had to get his Primary's fix) and working full time (since subs don't get paid time off) I've been run ragged. All the plans for the days leading up to Easter didn't get thrown out the window. They weren't even remembered to be able to be thrown out until it was too late. Yeah, the Easter bunny came, and we went to Easter Services this morning, but with all the hoopla and lead-up to Christmas, I feel like Easter needs a bit more focus. A bit more of Jesus, a bit more of reverence, a bit more of me. And it just didn't happen.
It seemed like all I could do just to keep moving forward, to keep suctioning, turning up (and down) the oxygen, keep on top (sorta) of kids doing their homework and other activities. It was hard, really hard. I felt I didn't measure up. I couldn't not only do it all, I could barely do any of it. And it hurt. I was just so, so tired and overwhelmed and exhausted (did I say that already?).
Anyway, so yesterday while we were putting together the Easter baskets and filling plastic eggs with jelly beans, we found some papers. Last year (or maybe the year before) we had taken some time during Easter week to write down our thoughts about Jesus and His sacrifice, and what He means to us.
I was reminded, it's okay. Perfection is not needed or even expected. My younger (and sometimes wiser) self wrote,
"He is my Savior and Lord, but even more, He is my friend. And I know that He wants me to be happy and be with him, so I will trust Him and follow Him and try to be like Him.
The scripture that I chose was Isaiah 61:3
"To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called the trees of righteousness, the planting of the Lord, that He might be glorified."
I don't have to do everything, be everything.
Does that mean everything was all of a sudden wonderful? Nope, I'm still very much human, and so are all the humans who inhabit my house, and the ones who come back. But I felt fed, given beauty, and exchanged my garment of heaviness for one of praise.
Aaron's doing well, as well as can be expected when he's still finishing a cold. But usually we spent 7-10 days in the hospital, at least. And from my calculations, we're just approaching the end. His oxygen fluctuates and the steroid side effects have been a bit rough. But he's back in school. He was part of a (quite funny) Easter egg hunt yesterday. And Daddy made him his very own Easter egg with his favorite color (red) and "I love Aaron" on it.
So grateful for Easter, for this season, for the empty tomb and all it represents. And grateful for my own renewal.
Thou hast turned for me my mourning into dancing: thou hast put off my sackcloth, and girded me with gladness; to the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee for ever.
