The Secret

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.

Thankful for the new normal.

I'm thankful for a lot of things and I think I make that pretty evident here.

I decided to go back and read last year's Thanksgiving post just for kicks and I started to think about this last year and what I am most thankful for.

I think most of all I am thankful that we have settled into our new normal. By now that seems almost cliche to say something like that in our world because I feel like we hear it and say it all the time. In our community, and when I say "our community" I mean pretty much any family who has a member who has special needs through birth or after birth, it seems that everyone is on the great search for the "new normal."

When am I going to feel like I can laugh again?

When will I be carefree?

When will I be comfortable with all this?

When will we accept all this? Can we even accept all this life will bring us?

When will we arrive? Can we go back? When will it be okay again? When will I feel happy again? When will I stop crying?

I feel like I'm falling. When will we learn how to fly?

The first year after Christian's accident, I didn't even have time to really process any of this. We just kept going, going, going and it really distracted us from any kind of grief that was lurking in the shadows.

It wasn't until our second year hit and we slowed everything down, concentrating on only a few things at a time. That's when the rain came. It poured. And it was gut wrenching.

Lately I've been thinking about that first and second year and how different they both were. And I think about right here and right now and I have to say how damn thankful I am that we've found our new normal. Not only have we found our new normal, we've carved out a space, burrowed out a warm place, covered it with fuzzy blankets, and we now reside here in our new normal, safe and sound.

This new normal is our safe place. Often we venture out and forget that our normal looks different. And we see the grief on the faces of others wondering what and why and how this could happen to such a cherub of a boy. Those faces hit us in the heart, but they don't stay there for long. We know we have a safe place...covered with fuzzy blankets. It's the new normal and it's all the rage. It's all ours.

And we do laugh, we don't cry nearly as much, we are happy, and it's finally okay.

Yes, it comes with a little acceptance, and, in a way, there is a sadness that comes with acceptance. But there is also a great release and forthcoming freedom to move on and find that spot called normal.

Some people can't accept what has been dealt. But I urge them to. There is happiness and there is light beyond the darkness. The misconception is that acceptance is giving up. It's really not. Acceptance is moving forward and learning how to fly.

So I am ever so thankful that we've found that cozy place that is our normal. I'm thankful we've found our groove. I'm thankful that not only have we found happiness and laughter, but we seek it out and claim it as ours with a healthy vengeance.

Just a few other things I'm thankful for...

The Blended Diet: It makes me feel more like I'm his mom again. And I'm thankful he has gained a whole pound, thank you very much.

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This relationship.

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Christian's new wheelchair. It gives him legs. And he's super comfy. I can tell.

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All of my mommy friends online and in person.

You give me strength when I need it most. And you allow me to give it back.

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Christian's art projects he brings home from school. I love each and every one of them simply because he touched them. It's a little bit of an obsession. It went from this...

2 projects

...to this...

How many projects?

...and I'm adding more. It's a wall in our house that is screaming to be made into a collage of Christian's artwork. I'm not sure Manny hears that scream, but I certainly do. So to be continued...

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Oh, and you know I'm grateful for my kids' smiles because I know what it feels like not to have one. Christian still gives me his little smirks and as far as I'm concerned it's a start.

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To all - have a wonderful turkey day. Enjoy your cozy normal. Happy flying!

Push me again!

If you think Christmas came early in the stores this year, Christmas came really early for Christian. Think October.

I mentioned a few weeks back that new equipment was in for Christian. Well, we were surprised with Christian's new wheels, his new seating system for the house, his car seat, and his swing set all in the same week! Merry Christmas! That's all you're getting, Christian. Just kidding.

This is Christian's new Special Tomato Seating System.

Read about the story of the Special Tomato Seat here.

I thought it was pretty "special."

Christian trying out his new chair and tray with his OT.

It's also approved to use as a car seat. Cool, right?

Enjoying his blueberry breakfast smoothie.

The set up.

We also got a pretty heavy duty swing set. This swing is called a Jennswing and made especially for children with special needs. Swinging and swaying can be very calming to the brain injured child. So we were so excited when we found out it was approved. Daddy set it up on our patio under the shade so Christian could enjoy it more often.

We're still working out positioning.

And we were thrilled to find out it came with another swing for little sister!

She's pretty happy about it, too.

Technically it came with a big kid swing so we're saving that until she's older. We replaced the swing with one more her size from another set we have so she can swing right next to brother.

Again...pretty happy about that.

We also got a car seat but I'm not crazy about it so I'm not sure we'll keep it.

Overall, though, I'm so grateful all this stuff was approved for Christian. The state of Arizona has been kind to us so far, as it was the state who ended up authorizing everything 100%, no matter what our primary insurance kicked in. To be fair, we hadn't ordered anything in over a year so I'd say he was due some new equipment. But I'm still grateful that with budget cuts, insurance and health care debates, and our system in constant change, Christian was still able to get what he needed to make his life just a little more comfortable.

And what does Christian think of the swing? Well, he wasn't exactly digging it at first. But the day these pictures were taken (yesterday) he changed his tune. In fact, every time the swing stopped, he vocalized and got a little whiny. Then I'd push him again and he'd get quiet. I would get distracted chasing Lola around the yard, his swing would stop, and he'd start whining again. I'd push him and he was quiet. Push, swing, stop, whine, repeat. Quite the little three year old I've got - "Push me again! Push me again!" Only in Christian's language.

I'm gonna go out on a limb and say he likes it.

Lessons in Perspective

Perspective.

I have a friend who is taking a course in photography and her latest assignment was to shoot from the perspective of something or someone else. So she chose Christian, and kind of by default, me. She took the picture of Christian's little, blond head and his perspective on the playground. I really just love this picture for all kinds of reasons.

Perspective was the reoccurring theme this weekend. It's an abstract idea, really, because perspective is a different experience for everyone. And that's selling the idea short. So often we loose perspective and we forget what's really important in life. Tragic events, in the meanest way, return perspective back to us. And then our perspective changes, temporarily, long term, both. And the perspective of others changes. It's ever transforming, ever evolving.

I was cleaning out my files, something I rarely do. I went through every single one. I read everything in each file and came out of it with a garbage bag and a half of trash and three quarters of a day gone. Oh, procrastination! Why do you make me pay!

Of course, I came across the PICU discharge report. Of course. I mean what else would you come across when you're going through your own files and you're all alone and Itunes just hit some song from Adele on your playlist? Of course you find it.

I was actually interested to read through it. I opened it and started to read with a matter-of-fact-ness. Especially now knowing and understanding a lot of the terminology. I started to read almost as an outsider, like a nurse reading discharge papers but with a small voice in my head reminding me to tread lightly.

"...He did not regain consciousness, nor have any spontaneous breathing prior to intubation by paramedics...he received epinephrine 0.1 mg x8doses at 1:10,000 concentration, atropine 0.2 mg x3 doses, and bicarbonate 10 mEq x3doses...and CPR was conducted. The patient had ROSC at 1810 hours. Initial rhythm was PEA."

Wait. What was that? What's ROSC? And what's PEA? Hello, google.

According to our friends at Wikipedia:

Return of spontaneous circulation (ROSC) is resumption of sustained perfusing cardiac activity associated with significant respiratory effort after cardiac arrest.^[1] Signs of ROSC include breathing, coughing, or movement and a palpable pulse or a measurable blood pressure.

That did me in. I wasn't treading lightly anymore. This was very, very heavy. And out of nowhere came tears and...perspective. He was hiding, that perspective, just waiting to pounce.

I think what got me was the word spontaneous. Now I'm sure there's a real nurse out there ready to tell me I'm probably reading too much into this but, to me, as I understand it, the medical staff worked on him with all their skill and might with basically no change. He was clinically dead. They almost called it. Until we came in. And you know the story.

No matter how forsaken I feel sometimes, no matter how jaded or weary I get, I feel deep down in my soul that's when God took over. They might call it spontaneous. I call it a profound Divine intervention.

The report goes on to note initial rhythm was PEA and according to Medscape Resource PEA is Pulseless Electrical Activity. The website also says the overall mortality rate is high in patients in whom PEA is the initial rhythm during cardiac arrest.

By all of the accounts above, Christian shouldn't have made it. He wasn't going to, except for that on his way to heaven he heard me calling and made a u-turn. Call it medical science, call it spontaneous, I call it God - that boy has business here on earth and there is a reason he made it. There is a reason for him. He may not walk, he may not talk, but he has a purpose here. I believe it.

And what's more, every single minute past the point of his life is a gift. As another special needs parent said, it's borrowed time. And I'm grateful for all of it.

Those tears that hit me weren't sad tears. They were tears of profound gratitude. They were tears of not so much disbelief, but simply awe at how amazing his survival is.

Perspective.

P.S. Christian was sick all last week with cold and fever junk. The cough they said he'd never have is strong and forceful and kept everything out of his lungs. And it's not spontaneous. It's purposeful. I'm happy to report he's feeling better, by the way.

The "w" word.

The prospect of getting a new wheelchair for Christian wasn't an exciting one. When you're about to have a baby, you don't plan for the day when you'll say, "Gee! I can't wait to pick out my baby's wheelchair!" You plan for nurseries, you choose whether you'll bottle feed or breast feed, but you do not plan for a wheelchair.

When we were first faced with the realization that a regular stroller wouldn't be enough to transport Christian, it was early on, while still at the hospital. The PT showed me a picture of the Convaid Cuddlebug and I loved it. I mean it certainly didn't look like any wheelchair I'd ever seen. It resemble more of a stroller than a wheelchair. And we didn't really have to call it a...the "w" word. It was really more of a special needs stroller.

It's been almost two years since we met Mr. Cuddlebug and he's served his purpose. But Christian has grown and we've grown. As much as it pains me to admit it, Christian isn't walking and is still very much in need of some alternative form of legs. That is undeniable.

It was time for the "w" word.

A wheelchair.

It wasn't at all a dramatic and tragic acceptance if that's what it seems like. It was more of a gradual acceptance of something that was once so hard to wrap my brain around. And now? I know my son's abilities and I know my son's needs. And he needs this. So it's not sad at all.

That doesn't mean I wasn't a wee bit reluctant to go through with the process. I've learned a lot of things but wheelchairs was a subject I wasn't hyped up about enough to do any kind of research.

We went for the fitting a few months ago and decided on a chair. We chose the color, black opal, which was, honestly, the funnest part of the process. We waited and then got the call that it was in.

I still dragged my feet into that appointment. I saw the miniature version of a wheelchair waiting for us and I didn't want to look at it dead on so I gazed elsewhere. While we were waiting for a couple more adjustments, I flipped through their catalog. I saw pictures of other wheelchairs that didn't look so much like wheelchairs. They looked more transitional. They were cuter. Did we make the right decision? Why couldn't we have chosen something cuter? Did it have to look so wheelchair-y?

And then it was time for Christian to try it out.

(Cue the magical fairy god mother bells)

Everything changed. It was perfect.

He sat up straight. He looked comfortable. It was perfectly fitted to him. This became the most exciting appointment of the year in a matter of minutes. He looked different. He looked older. He looked all kinds of good and it was apparent that this is exactly what he needed and I couldn't be happier with the chair.

Showing off his new wheels for the first time at school. 

It just so happened to be Halloween that day.

This is where Christian sits. Do the lateral pads for trunk support look crooked to you? That's because they are. They were set up like that to correct Christian's curve. He curves to the right so these pads put pressure at the bottom and top of Christian's rib cage to correct this curve. And he looks ten times better for it.

I haven't quite decided where to put my cup holder, left side or ride side. Yes, I got a cup holder. Mama needs a hook up, too.

This wheelchair is not just a wheelchair. It will be Christian's legs for the next few years. He hasn't been this tolerant while in the chair since he was medicated into submission. We've been to the grocery store, trick or treating, and to a parade. He is so comfortable and sits up so straight, it's the best thing that's happened to him lately. I absolutely love it.

And I'm not afraid to say it anymore. I love Christian's WHEELCHAIR!

Carpe the hell out of this diem.

Courtesy of Pinterest.

We usually shy away from filling our agenda on Sundays. It's a day of rest (and football) so we stay pretty close to home.

Tonight was a little different. We made plans to attend the annual event called the All Souls Procession. This parade is inspired by the celebration of Dia De Los Muertos (Day of the Dead). The parade is really a celebration of the lives of those who have passed. Everyone dresses up as skeletons, brides, and grooms. The parade has evolved into a production complete with giant puppets and constructed floats. Anyone can participate in this parade, anyone can walk. The running theme is a skeleton face so whether you're watching the parade or walking in the parade, it's fun to participate by wearing a skeleton face.

So we had planned to go and as the day drifted by and the temperatures dropped, it became less and less attractive of an idea. I was looking to back out. I was hoping my friend would call and cancel and give me an out.

She didn't. So I reluctantly started to get the kids ready. As I started the process of changing clothes, gathering shoes and the like, I started to think about how Christian was actually in an okay mood. He just might be up for going. The weather was actually not that cold and we could bundle the kids up. We could actually do this and have fun. It's not every day we can all do something like this together. Christian isn't always in the mood, especially in the evenings, to go out and get a heaping dose of sensory overload. I started to remember that often it's too hot for Christian to do a lot outside. And soon, it will be too cold, and Christian is not down with cold anything.

I continued to think about how we never know what will happen tomorrow. We pray Christian won't get sick because that most definitely means all of us are pretty much home bound. So why not take every opportunity to do something outside of the four walls of our house and bring Christian along? Why not take advantage of Christian's good mood? We have plenty of weekends where we can be lazy, do nothing, hang out, watch football, do laundry. Let's take the opportunity.

That's when, courtesy of Pinterest, I thought it...

We're gonna carpe the hell out of this diem.

So we did! And we did it with skeleton faces!

She kind of looks like a panda here but she really was a cute little skeleton.

Scaaaary!

Christian enjoying the parade.

Scenes from the procession...

Look! It's Ben's Bells! It was one of my favorite parts of the procession.

Mommy and Lola checking it out.

And, it's dark, but this was my other favorite part of the night - the UofA marching band and cheerleaders. They were all in skeleton face paint!

I'm so glad we decided to carpe the hell out of this diem (or this evening, rather). Christian did amazingly well! He whined a little on the trip over to watch the procession but once he was surrounded by all the music, drums, and people I didn't hear a peep. I think he really enjoyed the drumming and activity all around. He was mesmerized and people kept walking by taking pictures of him in his little skeleton makeup face. He was quite the attraction.

And how could he not be?

He's gonna have to sleep like this because I sure don't want to wake him!

One thing is for sure, we plan on seizing the day next year, too. But instead of watching from the sidelines, we plan on walking.



It's more than grocery shopping.

I was all set to tell everyone about Christian's new chair and how perfect it is for him. And I will share all of my wordy thoughts and feelings later but today something else happened and I was moved to get my blog on.

When my kids were tiny, I loved to take them to the grocery store. Some people hate it. I loved it. It was like mommy and baby time. I'd make funny faces with them, talk to them, steal kisses on their baby fat cheeks as I reached for the Cheeze-Its. It's one of my favorite baby memories of all three of my children - going grocery shopping with my Gabe, my Christian, and my Lola.

Now, my boys were awesome at this mommy and baby time. Lola, on the other hand, grew into the beautiful handful that she is today, which is really only suitable for very short and uninvolved trips, if that. But my boys? They were good and patient grocery store companions.

After Christian's accident, grocery trips made me sad. I wondered would I ever get to bring him to the grocery store again? I watched little kids at the store swing their legs in the front part of the cart and smile at the Momma's and my heart was broken.

This may sound sappy and sad and I'm sure there are plenty of you out there that think this is all just crazy talk. But it was just a thing for me.

Since the accident, I haven't taken Christian on a grocery trip. He's been to Walmart. He's been to Target (oh, he's definitely been to Target), but never grocery shopping. To be honest, it's been two things - the thought alone of the logistics of pushing him and a cart was enough to make me wait until someone was available to watch the kids. The other thing is that in the past he hasn't really tolerated long trips to any store. He gets tired and uncomfortable quickly and whines.

That has changed, I'm happy to announce. His new wheelchair is perfect for him. And with the right support, he has become more tolerant of his surroundings. He's more comfortable. Basically, what I'm saying is that he can hang.

So with this new found world for Christian, not having sitters available to watch him, and a desperate need to get some grocery shopping done in daylight hours...

...what I'm getting at is...

We went grocery shopping! Christian and Mommy! We did it! And it wasn't scary! And he did great! And somewhere in between the cookie isle and the produce section I realized this was a first for us.

It looked a little different for us, but we were back.

When we decided to go, I had to make sure we went early so we could avoid large crowds. Following suggestions of other pros at this, I was going to have to push Christian while simultaneously pulling the cart.

Are we seriously going grocery shopping, Mom?

Are we seriously about to go grocery shopping, Christian?

Yes, we are! And I think I got this.

My friend, Jenny, told me to take a lot of pictures. But I felt like a dork pulling out my camera in the middle of the store and my phone isn't that great with pictures. So I just caught one of our shopping experience. As you can see his is very tired but he still did great!

The only contesting Christian did was in the frozen food section because Christian does not get down with cold. But every time a little kid was around, his whole body brightened up and his head turned. It was like he got excited that there were other little people there. The other part Christian really didn't like was the cash register. All the beeping really pissed him off.

Everybody was very polite and the store employees offered to help a few times and did help us out to the car. Thank you, Fry's (Kroger), for remodeling. All that extra space made things way more manageable.

This was taken after the shopping trip in the parking lot. I had Christian hold the bananas.

And don't laugh at him. He hates the sun and I couldn't find his sunglasses so he got to wear mine.

When we left, one store clerk offered him a sticker and put it on his wheelchair belt. Another ruffled his blond hair. We were there for over two hours and I am still in disbelief that he tolerated a store trip for that long, and already tired and in need of a nap, at that!

So we went grocery shopping! And maybe he talked me into getting my favorite glazed pumpkin cake donuts I love. Okay, maybe he didn't, but whatev.

Tonight I'm grateful for a good wheelchair.

I'm grateful for glazed pumpkin cake donuts.

I'm grateful for my healthy little boy.

And I'm grateful for trips to the grocery store.