A hard talk to have.

As I was fastening Wyatt's wheelchair down to the floor of our accessible mini-van, he misheard something that was said. He said "Please don't say that." I asked what he was talking about and he explained he thought he heard the word "dead". I didn't say the word dead, but asked why he didn't want us to say it. He explained further that he doesn't like to hear those words- dead, die, death- because he doesn't want to die. I then curiously asked him why. "I don't want to die because I'm afraid I'll miss you and you'll miss me too much."

"Oh." I thought to myself as I tried to find the right words to say out loud. These conversations are hard.

But I explained to him that I didn't think he would feel like he misses us when he's in Heaven. I hope that he'll be so happy, free of sadness and pain, no worries or fear, filled with love and a sense of peace.

I really, really, really, REALLY hope for these things.

I told him that I understood why he would feel the way that he does and a lot of people are scared to die. I elaborated by saying, I don't know that anybody ever wants to die, but it isn't always up to us. Our plans aren't always the best plans and we have to trust in God's love, his plans and that he knows what is best for us.

I reassured him that I would be so very, very sad when he dies and I will cry a lot. But I will be ok and I will love him forever. Daddy and the girls will be ok too. It will take time and our hearts will hurt a lot, I explained. I will miss him more than I've ever missed anyone and I will be waiting for the day I will see him again. But I will be ok.

He looked at me, needing a little more reassurance, and said "Really?' And I said "Yes. really."

What I won't say to him- I may eventually be ok, but I doubt if I'll ever be the same. My love for him is so great, so powerful.

We finished the conversation after asking if he had anymore questions or worries. I gave him a kiss on the forehead and said "Are you ready to go?" He replied "Yep." And we were on our way to the Adventure Aquarium for a field trip.

I thought of our conversation all day, all night and still this morning. We've had conversations about dying and heaven in the past, though he typically shuts us down pretty quickly. This time he didn't.

I can only hope he heard what he needed to hear.

A different route.

Mania, anxiety, fear, agitation, fatigue, restlessness, pain....rinse, lather, repeat.

Wyatt has always gotten one med via his Jtube, Risperdal. There is no IV form. We give it late at night, only while he's sleeping, to avoid the increased pain and retching that giving meds enterally can cause for him. Risperdal has been to blame for causing the frequent and even constant tic'ing and myoclonic jerks (or questionable seizure activity). We tried weaning off this medicine, about a year ago, to see if the movements would slow or even stop, but as we were doing so he began to hallucinate.

I remember, we were awake most of the night with our boy who was shaking from head to toe, seizing, his temperature fluctuating, but not consistently high. I prepared myself for another infection. I emailed Dr. R that morning about our long questionable night. It was seconds later after I responded to his emailed reply that Wyatt began screaming, he was out of his mind terrified. He didn't recognize Bryan or I, we were robots coming to hurt him through his eyes. We couldn't move closer without him kicking, hitting and flailing his body around, screaming loudly and trying anything to get away from us. Pulling away abruptly causing his top heavy IV pole to tilt precariously, his lines stretched and I feared he would hurt himself. We hadn't seen that much movement in him in weeks up to that point. It's difficult to think about- he was so very scared of us that morning. As I continued to try to rationalize with him, talking him down. Bryan was able to get close enough to his IV pole to push a PRN dose of IV Valium through his med line. After that didn't work as well as we hoped, we were instructed to give him more. We eventually were able to get him to calm and sleep.

He was admitted to the hospital that day, Sunday. The next morning we stood on either side of Wyatt's hospital bed, Dr. R was rounding with his group of residents, he was just called in to our room following a smaller hallucination event turned seizure. I believe Wyatt was only half coherent, but aware we were close and cautiously staring us down, weary. Dr. R asked us what was worse- the shaking and tics or the hallucinations. Bryan and I looked at each other and quickly responded "the hallucinations." He agreed and we decided to give him an injection of Zyprexa, a med similar to Risperdal but only lasts for 24hrs. At the time the hospital pharmacy didn't have the Risperdal injection available.

I don't think I've ever shared these details here before. At the time I was unable to form the thoughts and words to do so, there was so much going on and our hearts were hurting deeply.

We discussed the intramuscular version of Risperdal multiple times since then, but have been hesitant to start it. Once it's injected it is in his system for 2 weeks. And we weren't sure how his body would react. It's also painful, which is not a plus. In a sense, Wyatt has his very own time release system within his intestinal tract. We don't know how much or if he will absorb any of the medicine on any given day. His body's ability to absorb is so unreliable due to the severity of intestinal failure. We were ok and making do with the unreliability up until this spring. I think some days he must have been absorbing some of the Risperdal, but now Wyatt's intestinal tract has seemingly gone on complete strike. We suspect he's not absorbing the Risperdal at all, or not enough to see benefit, which makes things very unpredictable around here of late. (Thankfully, he's not hallucinating or scared because of hallucinations!)

We lovingly refer to Wy as "the king of sleep" because, well, he sleeps a lot typically. But now the king is unable to sleep for days. This has been going on for a few weeks and has been gradually escalating to the point we're at now.

I realized last week he's acting a lot like my iPhone. Bryan laughed when I casually mentioned this to him, but he couldn't deny the similarities when I explained it further- the battery life of my phone is quite long and I keep using it and using it until I'm in the middle of a text and it hits 0%. I then have to plug it in and it begins to recharge from the wall or my computer, but it still doesn't work. I still can't turn it on. I must wait while it recharges for a bit before my phone will turn on and begin to resume functioning, while recharging its battery by an external source. Wyatt can be in the middle of a sentence and fall asleep. His body just stops- he hits 0%. His temp drops quickly to a low degree, he becomes whiter than white, his oxygen saturation drops, his machines start alarming, etc. and I then scramble to figure out what his body needs until its "recharged" enough to pick up a little on it's own. I've figured out through trial and error these last couple weeks that eventually his body can find a balance once it builds up enough "charge". But it's stressed.

Sleep is a good thing and his body needs it. It's tough for me, as his Mommy, when he doesn't wake for long stretches or days on end, but the opposite of that isn't a good thing either. I feel if we can get him back into an actual sleep cycle again the other issues- fear, anxiety, agitation and possibly even some of his pain, may fall back in line. That's my hope, anyway. So, with that being said, we made the decision to use the intramuscular Risperdal injection.

We won't know how it'll work for him until we try, right? That's what I think too.

So, here's hoping it works well by calming his mind and body, providing him restful sleep and, in turn, better...or should I say, more balanced days.

I don't think I've shared this video clip with you all- it shows a small portion of the shaking I've tried to explain multiple times. I constructed this video last spring to show his doctors what we were witnessing and to what degree. It's more than just a shaking or minor twitching limb, but it's difficult to put into words how so. I'm sharing this because, if anything, I want this space to be an open view of our life and our sons rivalry with Mito.

I like grey.

I've been reminiscing recently- it's been nearly a year since Wyatt was in room 8 on 3F, our second home, at A.I. duPont Hospital for Children. That day in June he, and all his equipment, was carefully and strategically moved onto a transport bed. I became nervous as they discussed what would happen if he began to die en-route to our home. They loaded him into the ambulance, I climbed into the front passenger seat and held back tears as we drove away from the hospital that we've come to feel so comfortable in through the years. We arrived home from the hospital a little more than an hour later, for what we believed would be the last time. Can you believe it? Almost a year.

Clearly this year has yet to play out like we thought- which is difficult to wrap our brains around some days. I remember last July emailing Dr. R feeling confused as to why this process wasn't happening like we all thought, feeling awful for questioning it, but wanting to know if he saw it too before getting my hopes up too high. It's now May 2013, which means July is not that far away. July 23rd will be our boy's 11th birthday. We are closing in on his 11th birthday when we didn't expect him to make it to his 10th! A miracle. A blessing. It could be considered both of those things. I do know it's unexpected, unimaginable, unexplainable and so amazing all tucked into one really cool kid. He knows he's proving us all wrong! He's proof of his own words- "anything is possible!"

I'm unable to put into words the actual feelings we've experienced within this year- it's been so different than any other. The highest of highs to the lowest of lows. But I can say it's been the richest year for our family. The actual hospital life that encompassed our daily lives was put aside. We left the hospital in June not expecting to return with our son. We have returned for visits, but not to stay. Though we dearly miss those that we came to know and looked forward to seeing, we have come to accept that they can no longer help our son with medical interventions. We're doing everything here, at home, that they would be doing there. And we have such respect for the honesty and love that was shown to us. It's not easy as parents to hear the news that your child is dying, but know it must also be very hard to come to the decision and deliver that news too. I trust his team more now than I've let myself trust any other doctors. And that's been life changing for me. I'm not sure he realizes it (or maybe he does), Dr. R has changed our family's life. He's changed my life, as Wyatt's Mother. And hospice has given us the ability to be together, to do "this" as we carry on as a family. Are they all perfect? No. Do I get frustrated with each of them at times? Oh, yes. And I'm sure the feeling is mutual occasionally. But I don't believe there is any better team for our son.

This year Wyatt's care was centered around comfort and quality of life. The worry of what was to come faded away, as we now know. This year he has been living on the brink of death- the questions don't linger overhead anymore. My focus began to shift to making memories, to fully embracing a moment, and not repeatedly swallowed up by medical research, advances and terminology. Wyatt's body is much like a puzzle, one that is missing a few key pieces...an unsolvable puzzle. In 10 years he has made me second guess everything I've ever learned, everything I ever thought I knew. I emailed a similar sentiment to Dr. R and I received a simple reply back: "You and me both." So, at least I know I'm not alone.

Living in the moment has been taken to a new level- there has been more than a few times that I've said out loud "His heart is beating, he looks comfortable- we're doing good!" The thought, 'it is what it is' sums up a lot.

Oh goodness, and let me tell you, this year Bryan and I have become uninhibited, having no shame, completely silly and ridiculous even, just to get our son to relax, smile and laugh. There have been times we succeed so well in our antics that he laughs so much his oxygen levels drop and his alarms start blaring. And then Bryan begins his "victory dance", which makes Wyatt laugh a little more (You should ask Bryan to show you sometime.)

Quietly singing a fake song, in our own phony "french" words, in a key that one of us should not be singing, in the middle of the Ophthalmology clinic of the children's hospital is not beneath us desperate parents hoping to lighten our son's mood. It did happen- I can't deny it! (The door to our exam room was closed, at least!) Being in the moment and not caring what the people on the other side of the door, the wall or building was thinking when hearing us sing our fake song in our made up language- those are the moments I actually love. Happy to be able to sit in that exam room with our boy, with the feeling of being carefree when our life is anything but, just to see his shoulders relax and hear him try to hold back a laugh. We now just might be as crazy as we seem!

In some ways knowing and accepting what his future holds and what our family is facing has been freeing. It's difficult not to feel the need to cram in a lifetime of experiences in an unpredictable amount of time, but really just being together feels perfect, complete, right where we are all supposed to be. Some of the most simple moments of hanging out in the living room watching a TV show together can be the most comforting. We have found a "normal" and even happiness (at times) in spite of the difficult circumstances. We've learned a different way of life this year. And though it may not be desirable, it's one we can call our own. And it's been so special in so many ways.

 I've learned very little is black and white- thankfully, I like the color grey.