Yesterday I was cleaning out the kids room and stumbled across the unexpected pull of an uncommon cohort: sentiment. This is not a common reaction for me to "things". Kids scribbly artwork,"Awww so beautiful", later that night kid in bed, TRASH! That 36th lego I just stepped on, TRASH! The microscopic doll accessory, TRASH! It's gotten so bad that when Meg or the kids can't find something there first reaction is, Papa probably threw it away. Don't get me wrong I love my kids creations, but there has to be a limit to the piles of scribbles :) So what was this magical item that lulled this buried emotion to the surface. It was this:
I know, confusion, what the heck is that? Many of you know since birth we have had to manage the "bump" on Phoenix's back. This is the first of many contraption we have made to do so. With this came rushing back all the emotion of the beginning of his life, which I don't often have time to feel. It felt good to remember a piece of his story that has been absorbed into the odyssey of life. I wanted to give you a glimpse of what his back is like, cause I know many of you have never actually seen it. I think it will help get a better glimpse into the day to day.
This is Phoenix a couple months after he was born
L
This is Phoenix last October right before we went back to Boston to get the rods removed. Poor buddy he was not doing well here.
So for a moment sentiment and I were aquantances, but now I need to empty the trash again.
Waiting......we have to wait a lot! From the moment we burst onto the scene we have to wait. As we journey through life waiting for things is a constant theme: waiting to get older, waiting to get married, waiting to have children, waiting for that promotion, waiting for our triple skinny latte, waiting for this particular season to be over. Some of things we wait for are no big deal, some of the things are a giant scary deal, and there is a whole lot in between.
Recently many of you know Penelope was in the hospital for 10 days and had to have surgery to remove a mass from inside her small intestines. Waiting while your kid is in surgery is one of those really hard times of waiting. After the surgery the doctor brings you into a little private room to have a post-op conversation about how things went. We have been in so many of these situations through the years that Meg and I instinctively know when its about to be bad. We always reach over, without saying anything or even looking at each other, and squeeze our hands tightly together. As we brace ourselves for the verbal assault, the doctor dives into her pre-rehearsed discourse. At some point in the middle, she says, "we think she has a rare form of cancer". The air felt like it got sucked out of the room, we both choked back tears, trying to stay focused on what was being articulated. At the end of it we were left with, "we have to send the biopsy to the lab to confirm, it's going to take a week".
Waiting a week to find out the fate of the path ahead is hard work! So we waited a week and then we had to wait another. I felt like my brain was fighting a constant onslaught of "what ifs" and theoretical scenarios, like you would a hoard of mosquitos on a summer night. Finally after two weeks, we got the news, NO CANCER! A sigh of relief, thank you God! While what happened is still a mystery, we don't have to walk this road that was certainly abounding with hardship and heartbreak.
So its been a week since we found out and I got to thinking about how do you wait well? Here a few thoughts from having to wait a lot on many difficult things.
1. There is no grace for what is not real. Trying to imagine or figure out what is next when it could literally go a million different directions is not helpful. Its like stepping out of the safety of your house into a hail storm. Whatever you are going through in realtime there is grace for that.
2. Talk and Listen. While worrying is not going to help, talking and listening about how you are feeling can. This takes the burden off of your mind solely and brings balance to the weight of it all.
3. Laugh!I know, how is that possible? Meg and I have this morbid, borderline disturbing sense of humor when we go through this stuff, it would probably offend you, but it is massively helpful to be able to laugh. Really you should just try and laugh a lot it makes everything better.
Thanks everyone for all your support through the ups and downs of our journey.
Truly we need a miracle Phoenix's body to happen, or we Return to Boston next week for a Full undoing of the Surgery! Here's the video with the details and I have edited together 2 emails to compose a more in depth explanation of these last weeks for us.
This breakdown/ wounds happened over weeks and we did not know it was happening because he had a full non removable bandage on for a month after surgery. In those first weeks he was bed bound and on his back so Obviously loads of pressure on these areas, now we are positioning on his sides at night to take pressure off and changing his position every 2-3 hours and doing wound care. So I truly believe time could heal them. When Phoenix was in the Nicu, we had to wait 12 weeks for them to grow a skin graph and to allow the skin on his back to regenerate.Over the weekend as some of you know Phoenix wounds got worse in some ways, on one side you can now see the hardware.
The push for removing everything is because of infection, open wounds have a high risk of infection and it could spread to hardware and The bone quickly...
Phoenix has no signs of infection, but has been on an antibiotic...
I find it amazing that in 24 hours our perspective and the overwhelmingness of it I'll can change so quickly just through the nearness of God and the ability to see from different angles alongside him and BECAUSE YOU are all carrying it with us. This will be detailed, but I want to give you all of it, so that you can understand our process and the reasoning in the days ahead. OK!!! Here we go!
Yesterday at our Appointment in Milwaukee. The Orthopedic Surgeon, Plastics, wound care and all other medical team members in unison recommended hardware removal (taking out the rods and ALL OF it) too, the issue is that the hardware has been exposed and metal gets infection and can not fight it off. It seems like they may not have been a good fit for Phoenix's structural makeup, the pressure and breakdown and that`. And even without signs/ symptoms there is no way of knowing what is breeding and when we'll fight that battle of infection, or if we'll fight it for years to come with many other much more severe side effects. So even if the wounds healed, it is a danger to keep them in.
Also, The wounds have continued to worsen and they are at this point doing what is called "tunneling" which is a red flag and does point to the issue of healing not being the skin as much as the bodies way of rejecting the hardware. When skin breaks down it is usually from the outside in. That means it will then heal healthily. Because Phoenix's is progressively seeming like the breakdown is from the inside (like the hardware attacking or causing skin breakdown) they believe that no matter how many things they try to repair it, the root of the problem is the hardware, not the pressure from laying on these spots or that he doesn't have fatty tissue there to protect it. In talking with all the specialists we have felt strongly aware that so much of Phoenix's recovery has pointed to signs of rejection. His length of immobility and pain, he's consistently uncomfortable and though off almost all pain meds, has still not fully adapted to or gained back his physical strength or endurance... However we were just told and thought that he was just adapting to a new body and so his road of healing was longer than others...
Once Mike had this appointment and we heard all of this detail we were obviously aware of OUTSIDE of a MIRACLE, we are going back to Boston. So in typical Reuwer fashion, we are reaching to God but also having to make plans for a surgical date and logistics. I do believe having this week is a total gift from God. All day Mike and Boston and Milwaukee worked together to nail down logistics. ****Phoe's surgery is scheduled for the 20th, 6 days from today, outside of a Miracle this week, which we are hopefully awaiting. We are working out plane tickets (which are crazzzzy Expensive right now, and all the other logistics here at home, so that I an go at least for a couple days ).
Not at all what we expected, but HIS ways are always truly higher and I feel so confident in God's ability to heal Phoenix, so that's what I am asking for this week.
Honestly there is SO MUCH Peace in both of our hearts in either Road. Something God did in our hearts through Evan's life, is taught us to Ask For His Will and Hope for the MIRACLE that we want, but in the end No matter what the real MIRACLE is, HE is God and Faithful and we will not be shaken or devastated that it looks differently than we hoped for, because he love to reveal himself through it all and be nearer than any other, so many times we have come back to this gift in Trusting again and again in asking.
I believe and Trust His Wisdom, as often in our life His miracles look very differently than our desired miracle...my heart breaks as I hate to watch Phoe and our family go through it all, but I have to give my energy to this day and week and Asking... And to helping both Mike and I wrap our hearts and minds around it all.
We always flip Flop in whom feels the weight and emotion of it. And truly in the last 10 hours, we can see the benefits (which is a miracle, as we were soooo Shocked when Phoenix's surgeon recommended it, just 24 hours ago)
Mike has battled with the questions that run through your heart and mind whenever you follow God's lead somewhere and it looks NOTHING like you thought... He has continued to find a resting place and This morning I woke up to the strong lie of the enemy and accusation of us making the wrong choice in this road, and others analyzing and thinking this (that is always when I know it's the enemies work) wondering or thing about how others may judge our life... I had not felt or struggled with this road of thinking yet and actually have felt the opposite the last few days in the midst of the shocking news, I have known the Assurance of God that he had chosen this path for us and has great purpose in it all. And like so many times in our life we can not even fathom what He is doing.
So please pray for our hearts and minds this week, that we can walk out each day in peace not running to next week and that all the logistics that we have to line up we would continue to know Grace, provision and peace as we move forward and YET stay in a stance of waiting.
That our other children and Phoenix would know supernatural peace.
That Phoenix's body would not show infection and that we would see a MIRACLE healing.
Love you all and am so very thankful that God has joined us with an army of others who lift this life beside us!
L
