Our own realities

Recently a specialist of mine spoke with me about the power of suggestion. She used the example of medications and placebos. How some patients can have a positive physical effect simply thinking they are taking medication that in reality they are not. I made the comment that it is mean. Might not have been what she was going for, but she agreed and continued with her point. I do not agree with manipulating people into believing something that isn't true. I also don't agree with anyone in a position of power over others manipulating a situation to fit their own warped version of what they believe is taking place in someone else's life. It alters outcomes in a negative way, whether they think it will or not. Particularly when it involves children.

This goes back to my previous post, but it also goes back to the last several years and what's been taking place within the healthcare system, and medical community. I do not believe it is headed in the right direction. Communication is done behind patients backs between Drs without documentation and patients aren't receiving proper care because of the influence of one Drs opinion. There's no such thing as a real 2nd opinion anymore. The other Dr is often being fed incorrect information. That cannot be unread or unheard, and it stays there in the Drs mind, waiting for an opportunity to jump out the second something can be twisted to fit. And any system controlled by insurance companies and profit driven entities hurts those in need of the healthcare, because the focus is money, not the patient. Anyone can find themselves in need of healthcare at any time. Even those who are currently without illness or injury. Life changes. Accidents happen. Harm is done.

Yesterday as we drove home from another unwanted but expected appt, I noticed how my glasses bring my vision into greater focus. I have mild nearsightedness, but also significant depth perception deficits. My glasses bring what normally appears to be a flat world into the real 3 dimensional view. The trees and mountains become much more beautiful when I can see the whole picture= the 3D view. I noticed the parallel with what's been taking place for us medically. That appt. brought much more into greater focus. I could see more detail, and from different perspectives. 

Neurology within the US is closing doors on a large portion of people, and the result is already being shown but too many are ignoring the signs and putting blame on the patients, instead of working on fixing it. Sadly, the focus is often no longer one of care. Even heart and lung problems, generally easier for them to understand because there's been more research, only goes so far, and then stops. From what I've seen, this problem is caused by multiple factors. Not enough or lack of research, negative and misleading stereotypes, lack of funding, greediness... 

I believe my honesty about those things and what takes place with us isn't enough and that much of the reality gets lost in my communication. Not enough clarification is provided or even sought by those who could make a positive impact.

One of those things I believe is lost in our communication is our gratitude, even though we experience and feel it. So I want to post some pieces of that gratitude occasionally. I'd love to do it daily, and maybe I can at some point, but I'll do what I can for now.

 We are grateful for therapies still available.

Pictured above is Jace doing PT this morning. He's balancing while Wii sword fighting. I'm grateful for the Wii and who gave it to the boys. I'm grateful for the changes we've been able to make, making this possible. And I'm grateful for their PTs willingness and ability to provide his service that benefits our boys. I am happy when I see them accomplish goals regardless of what will be another day.

 We are grateful for flowers.

God has given us such beautiful things to look at, feel, and smell. Something we experience because we have bodies, that He also gave us.

I wanted to cut these for the boys vases, but I couldn't bring myself to, because there are still blooms on the same stem that haven't opened yet.

But these lilies are so pretty!

 I can't believe how deep of color the roses have.

And I'm grateful for the adorable milk glasses I can use as vases for the flowers. I put them on the boys bedroom window sill and it brightens their spirits and mine.

I remember being surprised Aidan wanted flowers in his room, and then again that Jace and Damon do. But I can see why now, I think. They appreciate God's gifts to us eagerly. 

And it makes me want to plant more.

Too heavy

Sometimes life gets so heavy, that you have to drop some things and shift the load, to keep going...

Yesterday, the "year (two, three, etc.) ago posts" notification on FB reminded me that exactly a year ago, like countless other times, I posted while returning from PCMC. Hahahaha, so? 

This one was highly unusual though, because it was the appt that the comprehensive care dr had clearly chosen a significant and toxic deviation from her responsibilities. It seemed, as an attempt to deflect from her lack in care of our boys. In fact, Jace's health had declined under her care. Regardless of how many times she insisted he had improved, he had in fact worsened, with a horrible and dangerous chronic cough from what we later learned to be silent aspirating, severe abdominal pain from what we later learned to be food intolerances, and dangerous weight gain from the wrong food. All brought on by her decisions. If she had just admitted that her advice was wrong and created an appropriate plan of change for us to implement, the result would have been quite different. 

A physician is someone hired by the parents to be part of their team, that works on the medical aspect of a child's care. They can be particularly helpful or detrimental in cases of the medically fragile, of complicated nature, like ours and so many others I know. Usually we've felt drs were either helpful, or just not. So we were stunned when she became markedly detrimental. Not just because of the decline in Jace's health at her hand, but because of what she chose to do in addition. The last thing in a situation like ours, that one should do, is point the finger at the mom finding fault that isn't in her parenting and marriage ideals/goals, when she simply asked for help in an entirely unrelated matter. Why not? Well, it not only delves into the realm of "none of your business," and has "zero puh-cent" (as Jace would say) to do with you performing your own job duties... But because I'm (this mom) already beating myself up for every stinking little thing I wasn't perfect at just a second ago, minutes ago... days, months, and even years ago. I'm stressed beyond the capacity of the living and am drawing all the power I can muster from not only myself, but the heavens, to get through the painful yet sweet days with my precious cargo. I am fighting my own health battle while fighting their health battles. I'm so sleep deprived, I feel like I'm fighting those battles with a dollar store light stick saber while the enemy has a legit machete. I have a prayer in my heart all the time, that I will be what and who He wants and they need, and that when I fall short, I beg for forgiveness and ask that His atonement make up the rest. I have been much more patient with you than you've been with me. And I know my boys, husband, and myself so so so much better than you do. 

At the time, I couldn't fully articulate this. I just knew she was way off base, and that it all hurt me deeply. I don't go after people, attacking them personally. I'm too busy with my own work. And I always look at myself first when there's a problem. What was this all about? She claimed I wasn't being firm enough in my parenting Jace, referring to behavioral problems I was then reporting and asking for help with. One child of three. It became clear in conversations with her and her staff that her intent was not one of a caring desire to help Jace or help me help him or even our family as a whole, it was a desire to harm, full of discord and deceit. Which was bizarre to say the least. to this day, we don't really understand where it originates. I looked at every bit of parenting I did and didn't do, for even a nugget of truth to her claim. I asked my husband. The very person that had given her the idea I might be too lenient. Even he said she was entirely wrong, and inappropriate to boot. I asked others. We found nothing, but her mess.  She was ignoring several details, claiming all was my fault, and that Jace was fine I was just coddling him, that he didn't need medication changes of any kind. In fact she started questioning everything the other specialists had diagnosed and implemented, as if somehow her seeing them 2 times for 20mins each, made her more of an expert on the boys than anyone else with far more experience and history with them. She called a care meeting without us, his parents, wrote letters to their other drs, and more. Influencing their thoughts with no documentation. Causing problems, rather than behaving like a professional trying to fix a problem. 

Meanwhile, I was fortunate enough to figure out it really was side effects of one of his meds, and fixed the problem myself under the terms agreed to beforehand with the specialist who'd prescribed that med. She'd pulled him off of hospice, with a snarky tone. Her parting gift. Which created another set of problems. Requiring proof of his need for all the medications and equipment again. Knowing the full implications of her actions, we felt the need to prove other things all over again too. Including the seizures and fact they can't sweat, a giant medical problem of it's own. We cleaned up her mess, all of it we could reach. While rightfully irritated with her. I figured out what Jace needed for his health to stop the frightening spiral I knew it was in. The cough... I knew the implications of that cough. And the pain... the whole entire goal of his care plan was comfort measures. Abdominal pain is not comfortable! I provided the proof to his pediatrician, (videos, and he added his very own visit reports) and asked if my thoughts were on track. He agreed, going back to G-tube food only should take care of at least two of the problems. He also provided a back up plan if we were wrong. So I persisted in my request to the specialist, and low and behold, all three problems resolved from that one simple food change. Just like the behavioral issues resolved with one simple med adjustment. All while not only obtaining care for my own ridiculous health issues, but Damon's own need for a G-tube, and med adjustments. Their pediatrician and neuros have properly provided their medical care needs. I had no idea how freaking awesome that really is, until we experienced the complete opposite.

But I realized yesterday, as I looked at my old frustrated and scared post back then, that it wasn't necessary to waste any of my hard earned feelings on her. It wasn't necessary to be so scared for the boys medical care needs.

Because we do our job... working on being better people each day, Christ always on our minds and in our hearts. Which puts the boys care in an optimum position. I just have to remember, sometimes that involves a regroup... ;)

It revealed a troublemaker. It put the right dr back in as coordinator. It resolved chronic health issues for Jace and Damon, that had actually hastened Aidan's death. (I wish we'd all known for Aidan, but I did all I could then too.) It taught us to be even more assertive when dealing with those in control of their medical needs. It put us back on the same page with each other by forcing us to communicate better ahead of time. It reminded us to obtain copies of all medical records regularly. It reminded us to remind the specialists what is really going on behind the scenes and what we are really dealing with on a daily basis, to never take for granted that they still know. It quickened our own pace on installation of home security items with multiple needs in mind. It brought about the re-inclusion of their best specialist. (Trip out of state to bring him back into the care team.) It prompted me to finally ask for palliative care to intervene on their behalf... I thought I shouldn't have to and that I must be failing if I did, but they reminded me I'm doing what's right for these boys, and I don't need to apologize or change other than to be more bold. And finally, it put the focus back where it needs to be. Their comfort, and finding the complete set of mutations in the genetic testing.

That whole ordeal paved the way for more streamlined and efficient medical care for them.

I'm sure grateful for their physicians. They have almost 8yrs history with them, with the exception of a couple new ones from new needs. There are lots of things we don't agree with them about. Who does over that many years of such extensive experience?? And I'm still grateful for them, because they do their job to the best of their ability.

I'm being reminded that even when it looks so incredibly bleak, He is here, working it to somehow benefit us through the annoying and worst experiences of this world. When I get too caught up in what it was that I thought was so horrible or that I hoped so much for and it wasn't, I get wound up tighter than He wants me to be, and I miss His blessings-"little love notes." Maybe that's why Jace puts them aaaallll over the house. :) His love is from Him too. And He's not angry with us for being just that stupid when we do make that mistake and others. He loves us beyond our capacity to understand. Every time I get a glimpse of it, I fill up with the most warm, soft, cared for, burden lightened, beautifully sunny and colorful feeling that I'm not such an idiot ofter all, because He loves me. And He so loves these boys.

Damon's Surgery

Damon lost 12% of his body weight in less than 4 months. He was already in the lowest percentile of the growth chart, so that loss jerked him way below the chart percentages into no mans land. While Jace was adhering to a reduced calorie plan, Damon had full free range. In fact he was encouraged to eat high calorie foods. For a month, he only lost 1 pound, while eating tons of bread with jam, pancakes, cheeseburgers, tacos, pizza, soda, whole fat milk with extra boosters... all sorts of stuff that would have made me balloon out! I was stunned he still lost a pound. Then he after getting sick, he went into another month of hardly eating anything. I'd put food in front of him multiple times a day, and he'd take it, but ignore it. His lethargy was in full swing and we even had his lungs checked several times to make sure he hadn't aspirated without us knowing. Nothing showed. So we asked to see a surgeon, if nothing else, to prepare for when a Gtube had to be placed. But when he was weighed, he was already diagnosed with "severe failure to thrive" and the surgery was scheduled. He was sick again, so it had to be pushed out another month. I swear, he barely made it in time. He was so weak, so lethargic, and I was confident he was probably not only in starvation mode, but also dehydration. We were so worried.

In the meantime, he was in so much pain, in specific places, but also what he stated as, "all over." Severe pain. By surgery day, he had to be carried in to the hospital. I mentioned all of his specific pains, but had already asked for help with his migraine pains, as well as his overall pain. After his surgery, though, I reminded them I wanted help with his severe pain in a knee that had mysteriously shown up. It was such severe pain to use, but not to touch. He still had what appeared to be full range of motion. It was swollen. At times, red and hot to the touch. No scraps, bruises, etc. Though at first response from Damon to my questioning, he claimed Jace had hit him... I asked with his hand, an object, etc. Then he said nothing. And Jace calmly replied that he hadn't hit Damon. I believed them both at that point, because frankly, Jace wasn't even anywhere near him at any point close to his expressing the pain. I think Damon is just so used to pain like that being caused by Jace, that it's what he blurted out without thinking. Anyway, after so many examinations and consults I didn't count, and a worthless MRI, the verdict by the orthopedic surgeon who felt the MRI was going to be worthless, said I was probably right in my thought it might be the beginning stages of JRA. I was diagnosed when I was 8. Damon is 7. Later, when home and things settled, I did research, and sure enough, all his symptoms match the early stages of JRA. So, we'll keep an eye on it, and record any changes.
His recovery was not happening as fast as we hoped, and we really were concerned it had been let go too long by the drs, like Aidan's, producing permanent damage. We invested in some items to help him with the physical activities that were difficult and prayed for improvement. Slowly, he regained some strength. And gained some weight. He's still really struggling with seizures, pain, lethargy, and lack of independence, but it's still improved from 2 weeks ago. We'll take any, however small.

Perspective

The other day, I received news about a few of Aidan's care packages. I rarely get such info because of typically dropping them off at the PICU. So being able to get a tiny glimpse of Aidan's impact is pure joy and makes me feel less zombie-ish. I'm not referring to the silly but true, "mombie" who is dragging herself around caring for her little brood of energy and brain sucking munchkins.
I'm talking about an entirely different breed.

Later in the day though, I received other news. But it is the kind I'd much rather flush down the toilet. As it all continues to sink in, I'm remembering and realizing certain things. Decades ago, in more than one setting, I was warned this very sort of thing would happen right here in our country that had been so thoughtfully molded through the years to care a little more, for more of us. Perfect? Of course not. But I believe it was as close to it as us selfish and stupid human beings can get. Our history of deceit and anguish is repeating itself. The very things we learned not to allow power again. Apparently time and misdirected focus has faded the impact of those lessons learned so many years ago. Though I understood and knew such a prediction was true, I never really thought it would be in my lifetime, let alone actually effect my loved ones, my own babies, and me, so directly.
All these years, since being specifically warned what their lives would entail, I've planned, executed, all in, for improving the quality of my boys lives. We gained some ground, briefly. Then it was all stripped away, and a giant piece of our hearts and spirit taken. Now, again, the vicious cycle continues. Only this time, I'm sick too. And there's nothing I can do about it, because the insurance and drug companies stand in the way of desperately needed treatment. An increasing common denominator among those with any medical issues.
Even my precious 7yr old, with his limited studies and vocabulary, can figure it out.
I think Damon put it best the other morning... In his especially weak voice he slowly explained, "I want the past to stay away from the future, so all the pain can go away."

Later that night, as I was telling my gracious mom about the latest, a question of hers made me realize something. And it was reiterated when one of my new Drs asked, "how can you speak about all this so calmly and easily?" This hell and all the explanations of it is second nature to me. It just flows, simply because it is such a powerful experience that effects literally every choice... it swallows whole. Not because we are weak, or self absorbed, but because in order to keep going and not shrivel inside making choices while ignoring it, we have to accept it entirely to make those decisions more appropriately. Therapy did teach me something... My own spirit and other's guilt is not worth keeping it all secret.
Meanwhile I'm seeing more and more people get all angry and truly worked up, picking fights with their neighbors and coworkers and the person who just was in the news for choices that they don't agree with even though it doesn't effect their own life directly whatsoever.. all over the most, (I'm just going to say it) worthless things. Making huge assumptions. Expecting those who they know very little if anything about, to cater to their own every, little, verbalized or often silent demands. Because, for goodness sake! They should be able to do that, all it requires is ____! They should know better! They aren't firm enough with their kids! They are too firm with their kids! They are just being inconsiderate of my needs! Why don't they just ______?! They are so selfish and lazy!... Huh? How would any of us know? Do we know all details of that family's lives and what brought them to the situation at hand? Do we know all efforts and resources they have exhausted? Do we know their motives to all things done and seemingly undone? Have we even tried to find out? Is it any of that even necessary to find out? I know, I used to participate in it. When I used to have time and room for it. Now, I'm lucky to notice a poop pile on my lawn just in enough time to not step in it. I no longer have the time and room in my heart to curse over the owner of the dog who left it for not keeping their dog out of my yard and wonder how I can make them stop. Because I shouldn't and can't. It's of no real consequence.
But I do have room and time to do notice the amazing, wonderful, thoughtful, kind, talented things they do for others. I do have room to thank them. I do have room to pray and fast for them, because they have hard things to deal with. I do have room to share something that is needed. I do have room to listen to their joys and heartaches. I do have room to continue Aidan's light. I do have room to care about what really matters... their heart and spirit.

I'm not saying I'm choosing to be a doormat. Rather, I'm trying to pick the battles that really matter.
And then preparing emotionally and spiritually to lose. Because no matter who we are, and what it's about, we don't truly own it.

Everything is His.  And the only thing that is His, that is truly ours, is ourselves.


*Disclaimer- I know darn well I'm not perfect, and that I slip into these thoughts sometimes. And then I realize I really don't have the time or heart for it. It's a work in progress and requires constant evaluation.

Comparing

Back up to when I was a teenager, or maybe younger, I can't remember. I'd have to go find my patriarchal blessing to say for sure. And honestly, I'm too tired to get my sorry tush off this bed and look in the closet that's like maybe 30ft away from me. It's Fall. It's cold. I hurt. And I forgot to take my meds yesterday morning. So I'm jolting with electrical zaps every minute. Okay, I'll stop whining. Back to the subject...

I was, let's just say young, when I received my patriarchal blessing. One phrase in it has always stood out for me, and even when I forget what's in it, I always remember this one piece of advice from it. 

Probably because it repeats it a few times. hahaha :)

"Cast out all selfishness."

Well, to a teenager, that just sort of went in one ear and out the other. My whole existence was fairly selfish. In all honesty, even my service within the church was for selfish reasons- you know, so I didn't look selfish. hahaha

Through the years, I've learned more and more what that phrase really means to me. I know I'll continue to. But this last week has shown me, I really need to repent on this area. Because I compare myself to others. Am I a keeping up with Jones sort of person? lol NO. I suppose this is why I didn't think I needed to work on this... but I've been wrong. 

I compare how people react to my children vs how they react to others, I compare how my trials effect me vs others, I compare how my family reacts to us vs others, I compare how I look vs others, I compare my intellect vs others, (this one is especially laughable considering my lack of sleep and O2 right now) the list could go on, I'm sure.

One of my friends dropped everything to spend some time with me. And during that probably 2hrs, I could see at least some of how she'd sacrificed for me, and I watched her little girl innocently bless one of our ailing neighbors, brought me back to memories that helped me see that I compare, and lifted my spirits... two hours... She may not see her impact, but I do. I loved her before, but I have a new found respect for her.

A week before, two more of my friends invited me to a little conference. I appreciated the time out, as I never get to just go out. And for the first time in a long time, things fell right into place to allow it.

The things spoken there went right along with this.
All more proof that our lives naturally provide the steps for us to learn if we just pay attention and accept and choose to take it for what it is.

With all that's been happening the last several years, us barely able to keep our heads above water with the boys and my health, and the isolation it brings, I've felt self absorbed. I've worked to remedy this. But go right back to feeling I'm just not cutting it. For weeks, again, after making a new goal, I've been praying for discernment of other peoples needs. I guess I must be stone dumb, because I haven't had thoughts of how I should take so and so such and such, or do xyz for someone. I have had the thoughts about things for my husband, and maybe he is who needs this attention from me the most right now. Start in your own home kind of thing? hahaha Let's hope that's it, and that I'm not really that dumb. ;)

Life really has been kicking my butt lately. I'm grateful for this sort of lull (really sort of, it's not a cake walk at all for my boys) in their health, because my own has just been such a freakin pain. I've wanted to stop all the appts, tests, listening to absolute garbage, listening to bad news, and hearing things that are supposedly good news but give no real help in figuring it all out. I want answers for me, so I can help them, because there is a clear connection.
Our bills have been out of this world. I will never stop wanting that to go away. As time goes on, providers are less and less willing to work with people. Which is interesting, because they've marked their prices up so high, I know the margin for profit is huge. Greed. Lack of compassion for their fellowmen. The last days. I pray He's coming soon. As I look at our insane choices for a commander in chief, it's pretty obvious. We are headed for war. We are headed for days of basic needs not being met. And it does frighten me. Not because I'm scared of the end result. But because it's my responsibility to take care of these precious littles... I can't bare the thought of not being able to provide their needs. They suffer too much as it is... I know I'm not alone in this concern.

So as I keep moving forward, with their care and mine, I pray for the answers needed, and for their comfort.

Pumpkins '16

 An old friend from Walmart days, now has a pumpkin patch with activities for the kids, up in St. Anthony. So we took our boys on Saturday, to pick their pumpkins from a real patch, instead of a store. ;) They loved it! This old turkey was so sweet, and even followed us around for a while.

They were given suckers at the entrance.

 Sadly, they weren't running the train ride. Oh well, I can just imagine the boys jumping out mid-ride anyway.

The boys loved this corn pit, and probably would have stayed there for hours if we'd let them.

 They had this giant water/sewer tubing tilted to form a climbing slide. Jace loved it!

 And more tractor tires and bails of hay to climb on.

 Jace got the adorable pic as we left. Damon had a meltdown from being overheated. I thought it would be cold, and it was overcast when we were getting ready. But as we left, the sun came out. Warmed everything up, including the little man that was dressed for colder temps and can't sweat. :(

So my wishes for a family pic gave way to an awesome pic of Jace on one of their tractors.

 For the first year with the boys, I decided to carve the pumpkins. What a mess. hahaha. But they enjoyed it so much, I'll end up doing it from now on, I'm sure. Might as well invest in the carving knives.

 I was surprised Damon was willing to pull the guts out of his entire pumpkin.

 Jace, on the other hand, was thoroughly grossed out and only did a little bit.

 Kissing the smallest pumpkin.

 Damon's was an interesting combo of pen drawings and cut out "cheeks," aka ears, and mouth. I wish I could have video'd his scary faces. Little sweet Damon making scary faces just makes us laugh.

 Damon was angry the tea lights flickered. Pretty sure he was having killer seizures, because he was so grumpy and irrational. But Jace was just happy to have real jack-o-lanterns.

Aidan Joshua Lear 2016

Yesterday, two years ago, Aidan passed away in his bed at home.

It was a Sunday morning. A beautiful Fall day. Sunny, bright, not too hot while not too cold, just perfect, like Aidan. But my heart now had a giant hole, I was and still am, completely heartbroken. His brothers, though had been taken to play safely at another's house, were utterly crushed to come home and no longer see Aidan. They've never been the same again. They always say they miss him and Clayton.

I recently learned that they resent having been taken to not be with Aidan while he passed.

Some of my favorite pics of him...

For his anniversary, we picked flowers from our yard, and made the trip to the cemetery.

As we drove under the aspen trees at the entry, I knew Aidan had come to visit as well.

Because the weather was just like the day he rode in Herbie- chilly and rainy- we let the boys out of the car too. They took off, ignoring us completely- something they haven't done since being with Aidan. Of course we've had times of them not cooperating, but this was different, it involves not even responding to our calls.

I, again, knew that they'd been given a gift, that Lincoln and I weren't allowed to participate in... whether it was just meant for them because of their closeness, or we aren't pure enough, or whatever... they were given special time with him, that we weren't. It was just like old times with them. Exploring, with complete disregard for my agenda. :) Only difference, was instead of being loud as a herd of elephants, they were quiet as snow. Lincoln and I just stood there, watching, with amazement. I have no idea if he knew what was happening. But I did.

 I managed to get Damon's attention long enough for a few pics. But then it was right back to wondering and exploring while totally ignoring Lincoln and I.

He was obsessed with this flag though... made me wonder if Aidan approves, being his favorite color and a version of the phrase I've always said. Damon has been saying many things lately, that sound just like Aidan, or as if he's responding to him. And his constant saying he wants our family to be together again, has a new intensity that was only expressed during the months right after his passing. Don't get me wrong, he's always expressed it since, but it's the intensity I'm referring to. I think he is especially in tune with Aidan and Clayton right now. There are spiritually naive physicians that think I put this on him... he is doing it completely on his own.

 The pics were, very disorganized. So reminding me of the days of them with Aidan, when I'd cry while driving home from Dr appts. hahaha

 Yes, Lincoln has insisted, against my pleas, on killing the grass around my brother's stone, and in-between them... just like my father would have. Would someone please explain to me why they insist on killing perfectly good grass, just because it requires a little trimming??

After our cemetery visit, we took a care package to EIRMC, on Aidan's behalf, for a child of their choosing. Since there wasn't a child in the PICU, they offered either to keep it for an eventual patient there, or to give it to a child on the Peds floor. I immediately felt the confirmation that it was to go to someone in Peds. So Lincoln and the boys dropped me off and I took it in to the head nurse. She asked about Aidan and his brothers, so she and the life care specialist could share it with the recipient. I answered all her questions, held back my tears, showed the contents of our gift, and left, thinking about how the room Aidan had always been in, except once, was right next to us. As I left, she said she would give it to a 9yr old boy. I knew Aidan wasn't with me at the hospital... I don't blame him for letting me do that alone... he was never with us at PCMC either. He'd been with us on the way, but left as soon as we made it.

I could go on and on about what Aidan was like. But you already know.