It's Just Me.

It's a funny thing. I'm drawn to this blog. I want to write. But I have no idea what to say. My life isn't what it once was. In fact, I spend most of my time trying to figure out what, precisely, the word 'normal' now means to me. And that's okay. It's just the way things are for me and for my family as a unit.

Right now, we're absorbed with planning and preparing for Logan's celebration of life, which is good busy work. But it doesn't really help, per se. My brain still hasn't fully wrapped itself around the concept that he's not here with us anymore in a physical sense; that I can't just go to his room and hug him whenever I want. I can't say that I'm okay with it because I'm not. I never will be, at least not in this life. But I know that I have to live with it, and so I will. But it's hard. No, that's not a strong enough word. There isn't a word that's strong enough.

I think one of the hardest things about grief, for me, is feeling blindsided by silly things; things that wouldn't usually bother me. Unexpected pregnancy announcements. Vacation plans that I wish were my own. Old photos and videos I'd forgotten about. Adam dropped a bag full of old mini dv tapes at Costco to have them transferred to DVD last week. They sent him an email after the first tape had been converted, and an icy wave of shock washed over me when I saw the contents: Logan's first day of life. The minutes after his birth. I counted his tiny toes. Stared at his perfect baby feet. Admired the way his eyelashes rested against his fresh little cheeks. Longed to have him back again. And then remembered that it couldn't happen. And it was an utterly infuriating realization.

But like I said, I'm dealing. I haven't stopped living my life. I can't. I have other kids to care for. I have a house to manage. To be cliche, I have places to go and people to see. And it's possible that my strongest motivator right now is the knowledge that Logan would want me to keep living if he were here. He wouldn't want to be the cause of me checking out of my life.

So yes, just a few more days until we celebrate my Sunshine. Just a few more days until the Cars bouncy house goes up in the church lawn and we eat pizza and chocolate cake and remember who he was --and still is. I've had a lot of folks look at me quizzically when I tell them that kids are welcome, and in a way, I feel like I need to explain our rationale, even if it's simple to us. Logan was a child. His friends were children. So it stands to reason that if we're having a party in his honor, his friends should be included. I know it's an awkward and difficult subject for many parents to tackle, but it's our reality. We stared it down for 18 months. I, of course, respect others' decisions. But I want you all to understand mine, too.

Anyway, I guess this isn't the most eloquent entry I've ever made. It's here and there and everywhere. But that's okay. Because it's where I am. For now.

Celebration of LIFE

I'm feeling the pull back to blogging here. There are lots of little anecdotes percolating, but I need some time to regroup and make them coherent before I share.

That said, I did want to pop in and give the details for Logan's Celebration of Life service for anyone not connected to me via Facebook. It will be held on March 3 at 11 AM at Valley Community Church in Pleasanton. It's open to anyone who would like to attend. Our vision is to make it a party of remembrance, of sorts, rather than a sad affair. After all, it's in honor of a sunny kid who loved (loves!) to party and get his groove thang on.

Tribute

I'll be back to share more. Eventually. For now, I wanted to drop off a link to the tribute I wrote to my little Sunshine a few days ago. I know this kind of thing can be hard to read, but please, give it a chance because Logan's life here wasn't a sad one and his return Home isn't only a reason for tears. He didn't live a life in vain. He'd want us to dance. So in his honor, live, and live well. Love fully. Forgive. Share.

Tribute to My Big Hearted Little Hero

The Longest Day and a Trip Home

Today didn't hold what I'd expected.

Abby and I set off for our mother/daughter dance class at 8:10 a.m.. I didn't really want to go, but decided that we should since, well, we're paying for it and all. We've missed several classes so we're a little behind, and I slogged my way through the routine, grumpily thinking that I just wanted to drop the class once and for all. But then suddenly, as we ball-changed our way to the back row with lightning speed, I laughed in spite of myself. I don't know why, but a thought occurred to me: "I have to do this dance. Logan would love to see this dance. I need to do it for him."

We swung through the McD's drive through and then headed home. Much to my surprise and alarm, Adam was sitting on the driveway with Isaac and Brady awaiting our return. He motioned that I should turn the car around, so I did. I asked what was going on, and he said that the PICU doctors had called several times to tell him that Logan's condition was deteriorating rapidly. We were, in no uncertain terms, to get there as quickly and as safely as possible. I cried as we headed for CHO. There was nothing else I could do and my mommy's heart sensed what was to come. I tried to fight it, but I knew.

We got there and Adam's dad took care of the car for us as we high-tailed it to his room. He was stable, but with a very, very low heartrate, very low blood pressure and very low oxygen saturation. When I saw the numbers on the monitor, my heart fell into my knees.

We had the kids come in to see him. Abby resisted at first, but finally relented. Isaac marched in, said hi to Logan and then asked to play a game on Adam's phone. Brady, well, he's 13 months old. He wanted me to nurse him. So I did. Logan's nurse, Ramona, took a few photos for us, and then Adam and I were left alone with Logan. The doctor came in and explained that there was so much CO2 in his blood that he was unaware of anything and in no discomfort. As we watched his blood pressure and saturations drop, he explained that we had two choices. We could either let him suffer a heart attack, or we could take off the BIPAP mask, hold him and see what would happen. As we mulled the torturous decision, our pastor showed up and I asked him for his thoughts. I'm so grateful that he came and that he was there to walk with us through such a horrible day. We opted to spare him the heart attack --which would likely have been painful-- and the team transferred him to the palliative care bedroom on the second floor. When we got there, I sat on the bed and he was lifted into my arms. Adam came and sat close-by, and Abby came in to say her good-byes. We were so proud of her for doing it; we didn't pressure her at all but she wanted to come tell her little brother and best friend that she loved him and would miss him, but that she knew she'd see him again in Heaven. We sang to him; I sang "You are My Sunshine" one last time, and Adam sang a collection of bedtime ritual tunes. He opened his eyes just a bit and I saw him take a few very weak, very ragged breaths. And then he was gone.

Shortly afterward as I sat there cradling his little bruised, battered body, I had a vision. I remember telling Adam 'Do you see it? Do you see it?' My mind was filled to the brim with an image of Logan. He was standing in white light. He had his beautiful strawberry blonde hair back and a smile on his face, and he was waving. He was happy. It gave me peace and broke my heart all at once.

But in spite of myself and my human imperfections and worries and fears and doubts, I know that I will see him again. I know that we'll dance together. I know that we'll laugh together. I know that this life is not the end. I know that some of you don't believe that's true, but I hope that you'll open your heart a little and give God a try. Logan did. And he's my hero. He's the bravest, most peaceful, most tolerant, kindest person I've ever known and I'm lucky to be his mommy, even if I can't hold him again during this life.

I think it's important that I reiterate that last point: God loves YOU. Just like He loves Logan and my family. Logan didn't get called home because God was a jerk or because He didn't care. I don't know why he was called home so soon. And I'll never really know. But we live in a fallen world, and I don't want anyone to ever blame God for what happened to Logan. Sin is rampant, evil is rampant. And sometimes, it looks like evil wins. But it doesn't. Because Logan is in Paradise. My arms and my heart ache to hold him, but he's in arms that are better than my own.

I cried as we drove home tonight. I have Lambie now, and Logan's best lovey has a very special place in our hearts. He was there for every shot, every round of chemo, every poke, every everything. But I cried because I don't want my sunshine to be forgotten. And then I got home and looked at Facebook. And I was completely overwhelmed when just about every post on my News feed --not my wall, but my News feed-- was devoted to my sweet boy. Thank you for making us feel loved and supported as we begin this journey to healing.

I also ask you to do one more thing for me, if you would. Logan was all about fun and laughing and dancing and sunshine. (And still is; we just can't see him for now and that's hard.) In memory of him, will you do something fun tomorrow, and then tell me what you did? And in a few days or when a thought strikes, would you share a way that Logan's life impacted you personally? It doesn't have to be something earth-shattering; just a thought. If you'd prefer to contact me privately, you can do so at slwight@gmail.com.

I thank you sincerely for your prayers over the past 18 months. We've thrived on them. We've survived on them. And our family needs continued prayers. Although Logan is whole and healed and dancing in Heaven, we have a long road to healing ourselves.

Friday

Sorry, I know I've been remiss with updates. The truth is that there's just not much going on. Not much has changed and Logan is still in the ICU on the BIPAP machine, mostly not responsive, though I did have a sweet moment that brought me to tears this afternoon. I opened his right eye for him and held up my hand in the 'I love you' sign that we've used for years. For just a moment, he held up his own little hand and waved it back at me in a like-pose. It made me cry to realize that he could see me and that he loves me, too.

The report from Dr. T this morning was not a good one. He said that they're thinking that perhaps the cause of the fluid retention, the swelling of his ventricles and the other problems he's experiencing might be aspergillosis. Remember the aspergillus infection he had in his ear in October? Same thing. The theory is that it's been slowly growing and spreading and wreaking havoc over his body. If that's the case, there's nothing they can do for him medically. So we're in full-on miracle territory. Although this isn't new news for us, it feels more urgent. It feels more pressing. It feels decidedly more painful. After all, our family has suffered SO MUCH over the past nearly 18 months. But I still doggedly hold on to the notion of healing. Christ told his followers that the world would know Believers because they'd cast out demons, lay their hands on sick people and cause them to become well, and a host of other qualities. I believe this is true. I also believe that the devil --and ironically, the church at times-- stifles us. We've been programmed to believe that we DON'T have the ability to let God work through us via the Holy Spirit. And because of that --and probably for other reasons as well-- we often don't even try. And if you don't believe... well, Jesus repeatedly emphasized the importance of belief. It's an essential component of faith. Anyway, that's the update. Thank you for being on Team Logan and for continuing to pray for my sweet sunshine and our family.

Monday

So where are we now....

Yesterday, Logan had an MRI to look at his brain and spine, as well as a CT on his abdomen and stomach. The goal of the CT was to check for any underlying, previously undetected causes of fluid retention; the goal of the MRI was to check for neurological issues that could be contributing or causing his continued out-of-touch state. The CT showed a large amount of fluid around his tummy and lots of excess fat in his liver, neither of which is surprising. (Dr. T explained that the fat in the liver was the result of being on decadron for so long. I'm very pleased to say that he's now weaned from decadron and on hydrocortisone instead.) It also showed fluid around his heart. Dr. T didn't think that it was affecting his heart function, since they'd typically see low blood pressures with that kind of thing and Logan is hypertensive, but he's going to have an EKG to be sure. The MRI showed essentially no change from the previous scan, save larger ventricles. The girls (and yes, I can call them girls because they're probably younger than me) from neuro came by to adjust the setting on his shunt, which should bring the swelling back down again and relieve pressure.

So that's where we are. No one can explain why his vascular system is leaking so much fluid into his tissue. They're trying hard to get to the bottom of it, but it's not something they've seen before so they're not sure how to proceed. Dr. T did find one isolate study that associated edema like Logan has with a pairing of voriconizole (anti-fungal) and the blood pressure medication he was taking, so we've switched the latter in hopes that it will better control his BP AND bring down the edema. But it's really a shot in the dark. He readily admits that he has no idea what's going on.

Thank you for your continued prayers for Logan and for our family. Please pray for wisdom for the medical team, as well as healing and peace for Logan. Healing is there. We just have to BELIEVE.

Saturday

I really don't feel like posting an update, but need to ask for some specific prayers. The short version is that medically Logan isn't doing well. His shunt was replaced yesterday and he's still largely out of it. The main issue is that for some reason the medical staff can't explain, his body is leaking huge amounts of fluid into his tissue, which is causing major edema and all sorts of respiratory issues. Last night following surgery, Dr. S drained 1500 mL of fluid from his belly. That's a LOT. They've checked every potential cause, but nothing has come back looking to be the likely culprit. Please pray for wisdom for the medical team. And as always, for miraculous healing. (And if you would, also stomp the devil with your boot.) I've come to believe that it's not just knowing that God CAN heal, but believing that He WILL heal. And given the huge, seemingly insurmountable mountain before us, my imperfect, mortal humanity struggles mightily with maintaining faith. Yet I still believe that Logan is important and has a role to play here.