...that there were certain aspects of parenting that I would most definitely fail at, despite intensive desires to improve. I always knew I would have difficulty celebrating milestones. I knew I would want to keep journals of my children's first words, first steps, first foods, but that I would end up jotting a few ideas on a scrap of paper and then forget. I knew I would want to take those adorable monthly photos but just never remember to actually do it. I knew I would want to create awesome traditions for each holiday but ultimately just decorate the house and let the days pass. I always wanted to be that mom...the one that seemed to celebrate and memorialize everything. But instead I shrink away.
I think on a surface level it has to do with general busyness of life. But on a deeper level, it's a fear of failing. A fear that if I try too hard to prepare for something and the expectation isn't met, then I've wasted time and energy. If I put my efforts out there and they aren't recognized, then my pride is wounded. And if I pour myself into cherishing each moment, then I risk caring too much.
I have told myself time and again that I don't have to be that mom. That the mom God created me to be will provide just what my kids need in life. So I keep trying to celebrate the little things, and I still fail. But along the way I'm praying that my kids don't hold it against me...for too long, at least.
So here I am at another milestone. My third kid turns 6 months this weekend. I've taken those monthly photos for months 1 and 3...so maybe I'll remember to do it again on Sunday, and we'll at least have more monthly photos than my first two did! My first kid is beginning Kindergarten in the fall, and I've begun taking stock of all the milestones we can celebrate together as well as the little things he may do for the 'last time'. (I'll admit there is a still voice growing louder that tells me not to make a big deal out of any of those things...but I know I should try, right?) And tomorrow. Well, tomorrow is one of those days I wish just never had to happen.
Tomorrow is the 2nd anniversary of the day Luke died. No, it's not a milestone to celebrate. But it's one we have to honor. Yes, have to. I know that if I don't do something significant, however small, I will despise myself. If I were to let the day pass without disrupting our normal lives to set aside time to think on Luke and talk about him, more so than we usually would, then I would go to bed in despair.
And so we have tried to create a manageable tradition. We have a picnic, just our little family, at the Dell Children's Healing Garden. We bring the scrapbook my parents made for Luke and some games to play. We have lunch and just make some space to think about and talk about our second son. Last year, a couple of our friends from Dell stopped by to say hello. It was simple, and the weather cooperated. It was a sweet and quiet day.
Instead of looking forward to tomorrow as this sweet and quiet day of reflection, I'm feeling anger tonight. Frustration. I feel like tomorrow has snuck up on me in an awful way, and I wish I had more time. Truth is, I've been thinking about it for weeks. But every time the thought creeps in, I've pushed it aside. And I've kept pushing these thoughts aside until I've created this wall that seems to be holding all my emotions at arm's length. And here's where I get stuck.
Here is where my fingers slow and the words stop. Here is where I've arrived each time over the last 12 months when I've tried to sit down and form thoughts and reflect. I have this sense of impending failure. I will either write about Luke and reveal my inabilities to process my current grief or I'll write about something more light-hearted and risk sounding irreverent. And so I sit. Even in the quiet of my own home, I struggle to be honest.
But I know today has to be the last day. The dam of stifled emotions has got to be torn down. I have to try again to reflect on this life God has given us through Luke and after Luke. I have to just write again. I need to not be afraid to share the silly stories of our daily life or the serious stories of our dark days. We all live on a pendulum of joy and sorrow. I need to feel free to let mine swing again.
So to honor my second son, I aim to write again. About whatever comes to mind. Maybe I'll sit down to share the story of how my third son was born. Because it's a pretty fun story. And it's definitely a milestone to celebrate.
Until then, to Luke...you are ever-present in our lives. Your baby brother has the bar raised high for him. Quite frankly, we all do. We love you, kid. Here's to another year that Heaven is sweeter for having you around.
Thursday, January 19
Wednesday, January 20
I never once asked God why He gave us Luke...
...even though it's a common question in times of struggle. Why is this happening to me? Why do we have to suffer? Why does God bring these trials? None of these questions came to mind as we learned of Luke's needs and cared for his life. There was never a moment in which I doubted that God had brought this child into our lives for His glory and purpose. I was so grateful that He gave me that trust during all of the difficulty. In contrast to this trust I understood in Luke's life, I have felt such painful doubt now that our son is gone.
Nearly every day in the months following his death, I cried out to God, "WHY did you see fit to take Luke from us?!" The calming faith I experienced over the previous year was not gone, but it was certainly overwhelmed by a wave of frustration. There were days I feel such ANGER. We saw the trajectory of our lives and felt the rightness of it. Our family was living with purpose and direction and wholeness. And suddenly that was completely ripped apart.
I began this blog months ago, and as I typed, I was hit with conviction (as I had been many times) that Luke's life was not sustainable. His body was not meant for length of days. Science told us he was born with imperfections that current medicine could not overcome. But I always felt that science didn't know enough about genes yet to truly understand Luke's prognosis, and so we hoped for great things. And though his life was not comfortable, I am always reminded of how he fought and forgave and smiled. It was easy to forget his struggles as he gazed at you and grinned. I think that every time I sit down to write, I mention this thought. It is absolutely pervasive.
In the morning, when we woke from our disjointed sleep, Luke's smile would quite often be seen before the sunrise. During his long days at the hospital, where weariness abounds, his face would shine and bring that dose of energy needed to endure the next hours. When the new direction of our life seemed confusing and difficult, all we had to consider was how we would best love Luke, and our path was made clear.
In the last year, there has been no clear path. In fact, I have felt more that the path was completely gone, and we were being asked to sit a while. Sitting, waiting, unknown purpose...my enemies. Almost immediately after Luke's death, I began doing contract work again. In September, I accepted a part-time job back at UT and relished the distraction. As it turns out, September was one of my most difficult months because I neglected to take time to mourn and accept the pain that I felt. Instead, I tried pushing it down and covering it up. In October, we learned we were pregnant, carrying a child that would be due the same time Luke was. For the next week, I cried daily as I tried to process what I would mean to carry another child through the same seasons and hope for some different outcome. By the time we were ready to share the news with our family, we had lost the baby to miscarriage. What a strange experience to feel such sadness and relief at the same time.
Yet is that not all I have battled with in this last year? Though I feel excruciating loss at not holding Luke in my arms anymore, I am also struck with relief that his pain is gone. My son was hurting and is now living without pain. To beg him to be with me on earth again would be to ask him to suffer again. No amount of smiles from his chubby cheeks could hide the evidence that his life was fraught with struggle. Yet while I am truly thankful that he lives without limits now, I am also jealous to be with him.
At least since high school, I have known with deep understanding that our souls are not created to stay on this earth. God has created a paradise unlike anything our imaginations can conjure, and He has sent his own Son to be a ransom for us and return us to Him. Since Luke's death, two ideas have buried into my heart. The first is that I serve a God who knows intimately what it means to be separated from his child. He has watched his innocent son suffer and die. He knows my pain and anguish, and He alone knows the reason we must experience this. The second idea that I grapple with continually is that our lives here are merely a stepping stone to eternity. There is a line in a song that says, "My lips will praise oh King of Love, who sealed my heart for realms above." Each time I sing that song, I know that because Luke is in heaven, a piece of my heart is planted there. It makes me all the more anxious to join him.
But that will have to wait. Perhaps for a very long time.
So what now? We are in this waiting, sitting, seemingly purposeless time. There is still no clear path, though we have jobs, projects, activities, and trips on the horizon. We even have the blessing of expecting our third child in late summer. (This is a joy we prayed specifically for: that we would know the gift of another child before this day in January.) There is still this sense of needed to know our purpose, what God is preparing us for through this time and how we are to be used to bring Him joy and glory. We don't really know. So we continue to pray.
Luke's heart stopped beating some time after midnight in the very early morning of January 20th, 2015. As we gathered around his bed, with a huge team of doctors and nurses performing CPR and trying to revive him, John and I looked at one another and decided together that we needed to stop. In a matter of minutes, the team had cleaned his body of the probes, IVs, and leads and removed the large machines that had occupied the room for the last hours. Luke was in my arms once again, nestled on my shoulder with a weight I will never be able to forget. We wrapped him in the blanket I had sewn for him before his birth, and I kissed every place on his head I could reach. We took turns holding him and taking some pictures and a child life specialist brought materials to take his hand and footprints to create some keepsakes for us. We even cut the tiny little lock of hair that he had grown and saved it. I could have held him in that room for many more hours and walking out of that hospital room was a most unnatural and disturbing act.
So here were are, one year past. I'm not sure if we as a family will honor January 20th as "the day of Luke's death." Today we will have a picnic lunch in the Healing Garden at Dell Children's and just make some space for our little son. Our dear friends will bring us dinner tonight and stay as long as we like. I think that this day also feels like a time to celebrate the faithfulness of our family, friends and our Lord for walking beside us. John and I are aware that as dark as this year has been and continues to be, we are thankful for a faithful Father who has sustained our trust in Him and given us patience in this period of waiting. I am reminded as I reread these blogs that God has taught us a lifetime of lessons in the last two years. We pray that our lives continue to reflect what we have learned. We pray always that Luke's impact only grows stronger with time and that we honor our son with our love for his Heavenly Father.
For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake. For God, who said, "Let LIGHT shine out of darkness", has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
2 Corinthians 4: 5-6
Nearly every day in the months following his death, I cried out to God, "WHY did you see fit to take Luke from us?!" The calming faith I experienced over the previous year was not gone, but it was certainly overwhelmed by a wave of frustration. There were days I feel such ANGER. We saw the trajectory of our lives and felt the rightness of it. Our family was living with purpose and direction and wholeness. And suddenly that was completely ripped apart.
I began this blog months ago, and as I typed, I was hit with conviction (as I had been many times) that Luke's life was not sustainable. His body was not meant for length of days. Science told us he was born with imperfections that current medicine could not overcome. But I always felt that science didn't know enough about genes yet to truly understand Luke's prognosis, and so we hoped for great things. And though his life was not comfortable, I am always reminded of how he fought and forgave and smiled. It was easy to forget his struggles as he gazed at you and grinned. I think that every time I sit down to write, I mention this thought. It is absolutely pervasive.
Luke lived up to his name, Light, in every possible way.
In the morning, when we woke from our disjointed sleep, Luke's smile would quite often be seen before the sunrise. During his long days at the hospital, where weariness abounds, his face would shine and bring that dose of energy needed to endure the next hours. When the new direction of our life seemed confusing and difficult, all we had to consider was how we would best love Luke, and our path was made clear.
In the last year, there has been no clear path. In fact, I have felt more that the path was completely gone, and we were being asked to sit a while. Sitting, waiting, unknown purpose...my enemies. Almost immediately after Luke's death, I began doing contract work again. In September, I accepted a part-time job back at UT and relished the distraction. As it turns out, September was one of my most difficult months because I neglected to take time to mourn and accept the pain that I felt. Instead, I tried pushing it down and covering it up. In October, we learned we were pregnant, carrying a child that would be due the same time Luke was. For the next week, I cried daily as I tried to process what I would mean to carry another child through the same seasons and hope for some different outcome. By the time we were ready to share the news with our family, we had lost the baby to miscarriage. What a strange experience to feel such sadness and relief at the same time.
Yet is that not all I have battled with in this last year? Though I feel excruciating loss at not holding Luke in my arms anymore, I am also struck with relief that his pain is gone. My son was hurting and is now living without pain. To beg him to be with me on earth again would be to ask him to suffer again. No amount of smiles from his chubby cheeks could hide the evidence that his life was fraught with struggle. Yet while I am truly thankful that he lives without limits now, I am also jealous to be with him.
At least since high school, I have known with deep understanding that our souls are not created to stay on this earth. God has created a paradise unlike anything our imaginations can conjure, and He has sent his own Son to be a ransom for us and return us to Him. Since Luke's death, two ideas have buried into my heart. The first is that I serve a God who knows intimately what it means to be separated from his child. He has watched his innocent son suffer and die. He knows my pain and anguish, and He alone knows the reason we must experience this. The second idea that I grapple with continually is that our lives here are merely a stepping stone to eternity. There is a line in a song that says, "My lips will praise oh King of Love, who sealed my heart for realms above." Each time I sing that song, I know that because Luke is in heaven, a piece of my heart is planted there. It makes me all the more anxious to join him.
But that will have to wait. Perhaps for a very long time.
So what now? We are in this waiting, sitting, seemingly purposeless time. There is still no clear path, though we have jobs, projects, activities, and trips on the horizon. We even have the blessing of expecting our third child in late summer. (This is a joy we prayed specifically for: that we would know the gift of another child before this day in January.) There is still this sense of needed to know our purpose, what God is preparing us for through this time and how we are to be used to bring Him joy and glory. We don't really know. So we continue to pray.
Our first, and only, family picture. My brother-in-law took this and we didn't realize it existed until a couple months ago, when he sent us a load of photos. I cried in the middle of my shared office as I saw this picture and rejoiced that we had this rare beautiful capture of our family of four.
----------
Luke's heart stopped beating some time after midnight in the very early morning of January 20th, 2015. As we gathered around his bed, with a huge team of doctors and nurses performing CPR and trying to revive him, John and I looked at one another and decided together that we needed to stop. In a matter of minutes, the team had cleaned his body of the probes, IVs, and leads and removed the large machines that had occupied the room for the last hours. Luke was in my arms once again, nestled on my shoulder with a weight I will never be able to forget. We wrapped him in the blanket I had sewn for him before his birth, and I kissed every place on his head I could reach. We took turns holding him and taking some pictures and a child life specialist brought materials to take his hand and footprints to create some keepsakes for us. We even cut the tiny little lock of hair that he had grown and saved it. I could have held him in that room for many more hours and walking out of that hospital room was a most unnatural and disturbing act.
So here were are, one year past. I'm not sure if we as a family will honor January 20th as "the day of Luke's death." Today we will have a picnic lunch in the Healing Garden at Dell Children's and just make some space for our little son. Our dear friends will bring us dinner tonight and stay as long as we like. I think that this day also feels like a time to celebrate the faithfulness of our family, friends and our Lord for walking beside us. John and I are aware that as dark as this year has been and continues to be, we are thankful for a faithful Father who has sustained our trust in Him and given us patience in this period of waiting. I am reminded as I reread these blogs that God has taught us a lifetime of lessons in the last two years. We pray that our lives continue to reflect what we have learned. We pray always that Luke's impact only grows stronger with time and that we honor our son with our love for his Heavenly Father.
For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake. For God, who said, "Let LIGHT shine out of darkness", has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.
2 Corinthians 4: 5-6
Tuesday, March 24
Luke's Bench, Part Two
As promised, here is my process in designing and working with the top to Luke’s bench.
When I received the wood for this project several weeks ago, I was in awe of the color and quality and the SMELL.
The top especially just floored me. It was almost three inches thick and about forty inches by thirteen inches. The trip from the northern part of the country (I literally chose my boards from photos online) was a little bit rough on the edges but I was determined to retain the overall dimension of the slab for the top. The bench was very angular so instead of rounding-over the sides of the top I decided on a handsome chamfer instead (45 degree cutoff—just deep enough to get rid of the dents from the shipping process and ease the edges).
When I received the wood for this project several weeks ago, I was in awe of the color and quality and the SMELL.
The top especially just floored me. It was almost three inches thick and about forty inches by thirteen inches. The trip from the northern part of the country (I literally chose my boards from photos online) was a little bit rough on the edges but I was determined to retain the overall dimension of the slab for the top. The bench was very angular so instead of rounding-over the sides of the top I decided on a handsome chamfer instead (45 degree cutoff—just deep enough to get rid of the dents from the shipping process and ease the edges).
The thickness of the top was exciting but it also presented some design challenges. Even though a relatively-square top looked fine to me in my SketchUp model, when I had completed the base and placed the slab on top for the first time I thought it looked unbalanced. The top had a “weight" that distracted from the delicateness of the base. I texted Pam a few photos and asked her to help me design a top that worked with that base. The next day, I added a small bevel to the ends of the top and with Pam’s help the following weekend, we nailed it. Pam literally just sketched a line onto the top at an angle she thought looked right, then we measured the angle, set the track saw and it was perfect.
The angle flows perfectly from the taper of the three matching legs up to the top. Since my track saw has a maximum cutting depth that is just-shy of the thickness of the top (and even shorter at an angle), I had to finish the cuts with a flush-trim saw. It’s a kind of hand-saw with no “set” to the teeth. In other words, the teeth do not cut sideways, just flat.
I had decided fairly early-on that I wanted to make Luke’s ashes a hidden feature of the bench. When I thought of hidden furniture features, I was thinking initially of a drawer. In my mind one of the end-grain sides would be carefully cut into mitered components so that it would slide out and reveal a hidden compartment. The problem with this concept however is that even slight amounts of wood movement could cause the drawer to get stuck and, with the amount of material I would need to remove, I could be seriously messing with the stability of the wood. I found a blog post about a woodworker who had created a cavity inside of his shop workbench for a paper-copy of the plans he had put together for the workbench. He had it in his mind that a future owner would find these plans and…well, I’m not sure what he was thinking. His decision struck me as a bit odd, but it seemed like a perfect solution for my situation. With almost three inches of depth I could easily route-out a place with enough room to carry Luke’s ashes. That’s what I ultimately did.
Just like when I used my table saw, I was using a less-than-ideal tool to do something important. With the help of a well-positioned template (and at the expense of a couple if bits), I was able to make a cavity for Luke’s ashes that was just the right size.
The finish I used is an oil-wax mixture made by the same company that designed many of my tools. As a Mac-user, I know how nice it is to work within a cohesive ecosystem. The same applies here. The finish method I used involves wiping on a coat of the oil-wax mixture with a special sponge, waiting fifteen minutes, “sanding” the wood with a kind of green scotch-bright sanding disk to really rub it in, waiting 6-8 hours, sanding lightly to 320 grit (extremely fine), putting on a second coat with the sponge, waiting another 15 minutes and then lastly using a white polish-pad on the sander to finish it up. This sounds like a lot of steps but the ability to apply a flawless finish within 24 hours is a pretty amazing feat. The bench is intoxicatingly smooth. I love it.
While I was planning, I had submitted a question to a woodworking podcast related to attaching the base to the top and the guys on the podcast answered my question during one of their shows (http://www.woodtalkshow.com/episodes/wt222-freaky-teaky-crud/). Because of how I designed the base I was able to use a different method than I had asked about, but I was honored that they took the time to respond.
When the time came I centered the base over the upside-down top and counter-sunk six screws into the top. I over-sized the holes for the screws so as to allow for seasonal wood movement. Once the screws were in place I plugged the holes with tapered plugs that I was able to cut from the walnut scrap with a matched plug-cutting bit. Once glued, I flush-cut the plugs and used a cabinet-scraper to make things smooth again. The contrast looks great.
I waited for Pam to get home before I placed Luke’s ashes in their place. She was extremely involved in making this bench a reality and she needed to be involved during this part. Once inside, we took turns fastening the cover to the bench.
Once everything was in place we needed to put the bench in it’s new home. That was always going to be in the place of Luke’s crib. This meant packing the crib away for the first time since he died. I don’t need to explain that it was difficult for both of us. Doing it now though, we were able to replace it with something very meaningful and (I hope) honoring of Luke’s life. We'll keep the blanket that Pam made for Luke, his smaller acorn urn and the Orange Bird pillow I got Luke for Christmas nearby.
I confess that the legs have rocked on every surface it has stood since I put it together. This was one of the side-effects of my mal-aligned table saw, I think. Still, when the bench was put in the place of Luke’s crib, the legs stood perfectly flat on the ground. It was like I was hearing “you built it just right”. What a gift.
Wednesday, March 18
From John:
I worked on Luke's bench non-stop over the weekend and have completed most of the base. The top will take every bit as much attention. I’ll post a few of the in-progress photos while Pam and I work together on the top over the next couple of weeks. I'll post some of the more challenging parts of the build rather than a simple play-by-play. My first design was a lot like the final design, but I wanted to give it more weight. Here's the first design with my prototype:
I worked on Luke's bench non-stop over the weekend and have completed most of the base. The top will take every bit as much attention. I’ll post a few of the in-progress photos while Pam and I work together on the top over the next couple of weeks. I'll post some of the more challenging parts of the build rather than a simple play-by-play. My first design was a lot like the final design, but I wanted to give it more weight. Here's the first design with my prototype:
My method is borrowed from Jory Brigham who is a woodworker in California (he just won a TV show called Framework). Based on his blog and videos he has posted, his first step after he has an idea is to make MDF templates. He makes one large template of the entire piece (the side profile), and then makes a second identical template that he cuts into the component pieces. Individual pieces are traced onto the wood, then the wood is rough cut (not quite to the line) and joined. Once the rough shape is done, he places the first template over the wood and uses a router to trim all of the wood that extends beyond the template (the router bit has a ball-bearing that follows the perimeter of the template). I followed this method for the most part, but I was worried that mjy router wasn't quite up to the task so I cut all of my individual template pieces to final dimension before I joined them together. This wasn't an issue until I clamped the pieces together. Too much pressure caused some misalignment, but I was able to get things looking like they should in the end. I made a “tapering jig” to cut the legs, but unfortunately my table saw (which the jig depends upon) cannot be adjusted to the degree that it really needed to be in order for the jig to do what I wanted it to do (the blade isn't exactly 90 degrees to the front of the table. Believe me, I've tried). Still, with some sanding to remove the burn marks from the blade I think I was able to get passed this hurdle (the table saw goes on Craigslist soon, I think). Here's some steps in the making of my templates based on the final design:
As I’m sure you realize, the importance of this project to me and Pam goes beyond the object itself, to its subject. I wanted (needed) to focus my energy on something tangible to remind me and my family of our sweet boy. I remember vividly the 20-weeks ultrasound appointment, when the biggest news of the day was supposed to be “We’re having a boy!”, but instead was the revelation that there was a lot going on with our baby that didn’t look good. The tip of the iceberg ultimately called “partial trisomy 22” was his leg. It had grown to a point but, as would be made clearer in each visit, it grew then in another direction. His femur was “bifurcated” and his foot was “clubbed”. It sort of bent inward. It was the least-life-threatening evidence of his genetic anomaly, but because it was the first thing we saw it was special. I wanted to make some reference to this a part of the bench.
For the special leg on the piece, I had saved the best piece of wood. One piece of the wood had a gorgeous rippling effect in the grain ("figured," as they say). I hadn't realized until I was ready to start making it that it was about an inch and half too narrow. To fix this, I cut a small piece from the opposite end of the same board and joined it to the edge of the figured area (from the same board so as to match the color and grain pattern).
Because I was using so-called "loose mortise and tenon" joinery, even though I would eventually be cutting into the piece I added on to connect it to the rails (the long pieces of the base), the joined piece had no metal or other hardware to get in the way—it was effectively a new solid piece. Because of the grain-match, you can hardly see where I made the addition. I think the leg came out great. When I see it now I think instantly of Luke. Here's the final shape in the wood and a dry fit of the leg to the rail:
The wood I reserved for the four perpendicular cross-pieces was chosen out of my stack because it didn't quite match the color of the rest of the wood (I think it would be called “sap wood"). It doesn't quite show in the photo but it was lighter and almost looked like a different species. That was one aspect of the problem I encountered, but the bigger one was my own mistake. You see, I sold a lot of stuff to get a more powerful sander. I am still coming to terms with how powerful this thing is. Long story short, I must have used too much pressure in one spot and I created a low point in a visible spot (on one of the end support pieces). Now the top wouldn't lay flat from all angles. After regaining my wits I decided to sort-of edgeband the side of the support pieces on both ends with a thick piece of the more color-matched walnut scrap (edgebanding is when you glue a wooden veneer onto a surface to make it look solid—in this case it was already solid but you get the idea). I couldn't be more pleased with this solution. I was able to both cover the gap I had created AND maintain the same gorgeous dark walnut on all sides.
Phew! From below, the color contrast is nice as well. There was already going to be some contrasting wood on the underside of the bench for the bench's most important feature, but that’s for another time. Here is where we stand now (note the picture was taken prior to my sanding incident):
Monday, February 23
When I was young, I was told I would grow up to be...
...either a lawyer or a nurse. This stemmed from two things: I loved arguing (I like to think that I loved fighting for truth...and I realize I'm basically already arguing a point, but...) and I was always super interested in cuts and scrapes and taking care of them.
I grew up to earn neither of those titles (though marrying a lawyer might count for something. Maybe not.). Still, I found these particular personality traits highly useful in Luke's care. It occurred to me, while speaking with his doctors one day in the NICU, that the qualities realized in me at the age of six or seven were perfectly designed to manage the moments at hand. And in so many ways, my mind and heart exploded.
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I sit here tonight and wonder who would want to read these thoughts. Who do I write for? Who can understand the wildly random, chaotic, unending, circular thoughts that careen around my mind? Not even I can make it through. I desperately attempt to succinctly capture what has transpired in the last month, and I, I just stop. I have no clear words or explanations for my feelings. I am peaceful and happy in one hour and sobbing hysterically in another. Strange things make me cry: Getting a haircut. Packing the car. Kissing my husband goodnight.
Tonight I should be in bed. But on this night, last month, I was holding my lifeless son. And I just can't shake that feeling. The feeling that somehow I have to remember this moment and grieve it. Which feels dumb to me. What I want to remember more is his LIFE. I want to celebrate the first time he opened his eyes. He was a week old and just transferred to Dell's NICU from St. David's. We had followed the transport ambulance and just gotten to his room. I said hello to the nurse and went quickly to Luke's side to talk to him. I talked to him every day, wondering if he would ever grow strong enough to respond. And suddenly, as though he had done it a million times before, he cracked open his tiny eyes. And I burst into tears.
Within a few weeks, he would lock eyes with me and just stare. And everything else in the world would simply fade. One friend would remark that those moments of him gazing back at you would be like a gift, and to look away would dishonor it. I would spend hours of his life just looking into his dark eyes. It is these wonderful memories I wish to cling to. Yet holding tight to this happiness makes me weep all the more.
And so we sit in these circular thoughts. It is good to wrestle with my thoughts because I feel God calling me to truth through them. But I want to admit to you that I often wander into anger and frustration. You may see me sometime and note that I am smiling or even capable of speaking of Luke with joy. But I have moments and hours of great sorrow and hurt. I called my mom last week, hiccuping with tears. Luke's existence brought so much purpose in our lives, and I was angry with God for throwing us "off track". Yes, I realize that God is still working a singular plan here for the three of us. But I can no longer see that plan, and I am feeling knocked senseless. While I know by personal experience that even painful situations (and this certainly is the most painful time we have ever known) will bring about a surprising joy, I cry out to God that the joy He gave us in our two boys was all we ever wanted.
All of my life, I have desired to understand the purpose of difficult times. If I can understand the growing pains underneath the surface, it makes the aches easier to bear. But this default mindset angers me now. I cannot compel myself to reduce Luke's life to some lesson, some experience to remember. He is a part of my body and an intimate member of our family. C.S. Lewis, in A Grief Observed, likens death of a loved one to an amputation:
"After that operation either the wounded stump heals or the man dies...Presently, he'll get back his strength and be able to stump about on his wooden leg....(but) he will always be a one-legged man. There will hardly be any moment when he forgets it...His whole way of life will be changed...At present, I am learning to get about on crutches. Perhaps I shall presently be given a wooden leg. But I shall never be a biped again."
Our two boys were perfect together. Jack's compassion and gentleness beautifully met Luke's needs from an older brother. He was a constant helper to me, wanting to care for his little "brudda" in every way possible. As a mother, I was struck with a sense of purpose, raising our two very different boys with equal, overwhelming love. John and I strongly felt that, despite the difficulty, this life was perfect for us.
Which is why, right now, I fight against anger. I feel like I just discovered I could run and suddenly my leg has been ripped off. Oh, we knew all along that Luke's life would be short. But we did not understand how deeply his life would reach into our own. It seems odd to say that about my own son. But I cannot explain that more. So here I sit, wondering how to proceed. How do John, Jack and I use the gifts God gave us for anyone better than Luke? When our puzzle fit together so wonderfully, it is hard to imagine any other picture.
We wake up to find that we have experienced an amputation, and life as we anticipated it has vanished. So we are taking stock and looking for new direction. I am seeking solace in the truth that God's purposes are higher than mine, and he sees our lives in their entirety, working them for our good and His glory. Honestly, I need this reminder every second of the day or I melt into frustration and hurt.
All of my life, I have desired to understand the purpose of difficult times. If I can understand the growing pains underneath the surface, it makes the aches easier to bear. But this default mindset angers me now. I cannot compel myself to reduce Luke's life to some lesson, some experience to remember. He is a part of my body and an intimate member of our family. C.S. Lewis, in A Grief Observed, likens death of a loved one to an amputation:
"After that operation either the wounded stump heals or the man dies...Presently, he'll get back his strength and be able to stump about on his wooden leg....(but) he will always be a one-legged man. There will hardly be any moment when he forgets it...His whole way of life will be changed...At present, I am learning to get about on crutches. Perhaps I shall presently be given a wooden leg. But I shall never be a biped again."
Our two boys were perfect together. Jack's compassion and gentleness beautifully met Luke's needs from an older brother. He was a constant helper to me, wanting to care for his little "brudda" in every way possible. As a mother, I was struck with a sense of purpose, raising our two very different boys with equal, overwhelming love. John and I strongly felt that, despite the difficulty, this life was perfect for us.
Which is why, right now, I fight against anger. I feel like I just discovered I could run and suddenly my leg has been ripped off. Oh, we knew all along that Luke's life would be short. But we did not understand how deeply his life would reach into our own. It seems odd to say that about my own son. But I cannot explain that more. So here I sit, wondering how to proceed. How do John, Jack and I use the gifts God gave us for anyone better than Luke? When our puzzle fit together so wonderfully, it is hard to imagine any other picture.
We wake up to find that we have experienced an amputation, and life as we anticipated it has vanished. So we are taking stock and looking for new direction. I am seeking solace in the truth that God's purposes are higher than mine, and he sees our lives in their entirety, working them for our good and His glory. Honestly, I need this reminder every second of the day or I melt into frustration and hurt.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith - of greater worth than gold, which perishes even though refined by fire - may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls." 1 Peter 1:6-9
Thursday, January 29
I have read many a Mommy Blog...
...that has railed against the older, nosy woman who smiles at you and your screaming child in the Target check-out line and says something cliche like, "Enjoy every moment; they grow up so fast!" To which the Mommy Blogger replies, "How am I supposed to enjoy this moment? This is exhausting! Can I not look forward instead to better days when my kid uses manners, ties his own shoes and stops throwing food on the floor?!" And all us tired mommies out there breathe a collective, "Amen."
I get it. I totally do. I have a two and a half year old who has taken to throwing himself on the floor and grasping at furniture legs to avoid being dragged into bed at night. He has almost zero interest in potty training and repeats already-answered questions with supernatural persistence. This particular stage has its challenges. But while I can understand the aforementioned Mommy's frustration, I think the over-reaching granny in Target is missing the more startling reality. We are not called to enjoy each moment because children grow up so quickly; we should savor them because THERE MAY BE NO MORE MOMENTS.
Do you get that? Do you?
If you have spent much time with me over the last year, you have probably heard me talk about this. There was a time when Luke was still in the NICU last summer, and John and I were home with Jack. Jack tumbled off our bed and landed really awkwardly on his neck. He had fallen off our bed once before, but this fall was worse. And though I am not prone to do so, I gasped and ran to his side, examining him carefully before cradling him in my arms. With tears in my eyes, I looked up and told John, "We are so concerned for Luke right now, but we could lose Jack first."
I have thought of and spoken about this incident often. It is not intended to be dark and morbid, but rather a reminder of the reality in which we live. NOTHING IS GUARANTEED.
No, I don't think we all need to sit down and write a bucket list and spend the rest of our time and energy trying to complete some crazy set of goals. Too often, our ambitions become wholly selfish and altogether unfulfilling. No, this isn't a call to change everything about your lives. Instead, be careful of your perspective.
John and I knew from the beginning of last year that there was significant risk in Luke's life. There was a constant timeline to his days that always looked too short. There were at least two very dark periods in his seven months outside the womb during which we truly recognized we would say goodbye to our son much sooner than we desired. But during the bulk of his breathing days, we lived with a hope that we could plan for the future. At the start of 2015, we were anticipating 3 major surgeries and were trying to plan them around a family vacation and other minor events. Even on the day of his death, I wrote an email to family excitedly speaking of bringing him home that week. We were looking ahead to a future. Throughout all of this, though, we knew no future on earth was promised.
Despite this knowledge, there was really nothing that prepared us for Monday night. We have had the phone calls before when a doctor beckons us to come to the hospital as soon as possible. For no good reason at all, they have often happened late at night. But the phone call at 5 pm was noticeably different. When a nurse cannot tell you over the phone what has happened, I understand to expect the worst.
I cannot say if the pain of losing my child is lessened because I knew his days were numbered. I cannot say this because I have no other experience with which to compare. I do know that this grief is heavy to bear, and I would not wish it any worse. I do harbor a couple of regrets, one of which is not having a true family photo. I am praying to be free of that regret because it is ultimately meaningless. We did not love Luke any less by not taking photo. But maybe I'll be better about taking a quick second to capture a moment with Jack. It has been freeing this week to fill up my photo stream with snapshots of Jack and his cousins and friends. We certainly have no shortage of wonderful photos and videos of our smiling Luke.
I will always wish we had more.
I know this is an idea I will impress as frequently as I am given opportunity, but for now I can expand no more. Be careful your perspective. Be thankful always. Find joy in seemingly joyless moments. Simply because you can. And as often as you are able, surround yourself with others who will share in your celebrations and in your sorrows.
I get it. I totally do. I have a two and a half year old who has taken to throwing himself on the floor and grasping at furniture legs to avoid being dragged into bed at night. He has almost zero interest in potty training and repeats already-answered questions with supernatural persistence. This particular stage has its challenges. But while I can understand the aforementioned Mommy's frustration, I think the over-reaching granny in Target is missing the more startling reality. We are not called to enjoy each moment because children grow up so quickly; we should savor them because THERE MAY BE NO MORE MOMENTS.
Do you get that? Do you?
If you have spent much time with me over the last year, you have probably heard me talk about this. There was a time when Luke was still in the NICU last summer, and John and I were home with Jack. Jack tumbled off our bed and landed really awkwardly on his neck. He had fallen off our bed once before, but this fall was worse. And though I am not prone to do so, I gasped and ran to his side, examining him carefully before cradling him in my arms. With tears in my eyes, I looked up and told John, "We are so concerned for Luke right now, but we could lose Jack first."
I have thought of and spoken about this incident often. It is not intended to be dark and morbid, but rather a reminder of the reality in which we live. NOTHING IS GUARANTEED.
"Do not boast about tomorrow, for you do not know what a day may bring."
Proverbs 27:1
No, I don't think we all need to sit down and write a bucket list and spend the rest of our time and energy trying to complete some crazy set of goals. Too often, our ambitions become wholly selfish and altogether unfulfilling. No, this isn't a call to change everything about your lives. Instead, be careful of your perspective.
John and I knew from the beginning of last year that there was significant risk in Luke's life. There was a constant timeline to his days that always looked too short. There were at least two very dark periods in his seven months outside the womb during which we truly recognized we would say goodbye to our son much sooner than we desired. But during the bulk of his breathing days, we lived with a hope that we could plan for the future. At the start of 2015, we were anticipating 3 major surgeries and were trying to plan them around a family vacation and other minor events. Even on the day of his death, I wrote an email to family excitedly speaking of bringing him home that week. We were looking ahead to a future. Throughout all of this, though, we knew no future on earth was promised.
Despite this knowledge, there was really nothing that prepared us for Monday night. We have had the phone calls before when a doctor beckons us to come to the hospital as soon as possible. For no good reason at all, they have often happened late at night. But the phone call at 5 pm was noticeably different. When a nurse cannot tell you over the phone what has happened, I understand to expect the worst.
I cannot say if the pain of losing my child is lessened because I knew his days were numbered. I cannot say this because I have no other experience with which to compare. I do know that this grief is heavy to bear, and I would not wish it any worse. I do harbor a couple of regrets, one of which is not having a true family photo. I am praying to be free of that regret because it is ultimately meaningless. We did not love Luke any less by not taking photo. But maybe I'll be better about taking a quick second to capture a moment with Jack. It has been freeing this week to fill up my photo stream with snapshots of Jack and his cousins and friends. We certainly have no shortage of wonderful photos and videos of our smiling Luke.
I will always wish we had more.
I know this is an idea I will impress as frequently as I am given opportunity, but for now I can expand no more. Be careful your perspective. Be thankful always. Find joy in seemingly joyless moments. Simply because you can. And as often as you are able, surround yourself with others who will share in your celebrations and in your sorrows.
"Rejoice always, pray continually, give thanks in all circumstances...May God himself, the GOD OF PEACE, sanctify you through and through. The one who calls you is faithful, and He will do it."
1 Thessalonians 5, excerpts
Thursday, January 15
I've dreaded nights for a while now...
...and therefore have a really hard time falling asleep. Luke's constant needs mean that John and I are caring for him at least once an hour between the two of us. At best, we'll each get about 2.5 hours of sleep in one chunk. But the rest of the night is spent popping up every so often to suction, change, turn or comfort our little boy. It's crazy rough, and there have been a few nights when I've simply stayed up reading rather than trying to sleep. Despite all this, I honestly forget about how difficult the nights are about half way through my first cup of coffee. Our days are busy and there is no real stopping to consider how sleepy I may be. I thank God at least once each day for giving John and I energy to patiently enjoy the days.
The last three nights, however, have been especially frustrating. My patience is drained, and though my heart aches for the needy child I hover over in the dark, I am filled with hopelessness that we will never see the end of this stage. I have cried out each night in anger as I am pulled again from a glimmer of sleep and am reminded that my son requires help because he is in distress. The last three days he has shown random signs of illness: elevated heart rate, pale and sweaty skin, vomiting, and labored breathing. He wouldn't do all these things at once or for very long, but we were watching him carefully. Sure enough, last night around 7 he began exhibiting all these symptoms continuously. We decided to wait through the night because we already had an appointment in the morning at his Trach Clinic, which is at Dell Children's. I'll admit a small part of me was not ready to make another late trip to the ER. Especially just 3 weeks after the last one. But the next morning rolled around, our nurse arrived, we packed up the car and left. Then immediately we pulled over because Luke started turning blue. I grabbed his Ambu bag and threw open the back door to help. Thankfully, Luke seemed to simply be holding his breath a bit in his frustration and we were able to calm him down. He recovered, and we hit the road while I prayed that the morning traffic would be light (It was!). On the way to the hospital, I called our Trach Clinic nurse (I truly believe Katie Dillon might be an angel.) and let them know Luke wasn't in good shape. As soon as our doctor saw Luke, he told us to check in through the ER to be admitted. Katie escorted us through (we have learned that Luke is seriously high priority for ER service and have never waited for help) and soon Jack, our nurse, Luke and I were filling in a small exam room. To make a long story short, Luke got worse before he got better, but we had him on vent support and settled into Pediatric ICU by noon.
Over the course of Luke's short life, we have begun to notice a pattern with his respiratory needs. In June, we were told a jaw distraction was a positive next step to allow Luke to breath on his own. Indeed, the surgery was successful in pulling Luke's tongue away from covering his airway and we enjoyed 8 weeks at home with our son with minimal intervention. But it was soon apparent that he was not successfully breathing on his own and we were hospitalized again, enduring a tracheostomy. A few weeks post-surgery, we were able to take Luke off the vent and we have been home since using only oxygen support. However, in this season of respiratory illness, it is once again clear that Luke is not living well with the supports he has.
Doctors have not once tried to tell us that the current solution will solve all our problems. There has always been a cautionary air to our conversations. Even back in June, we knew that a trach and/or a vent were possibilities. Yet our doctors, despite what some may say about those in the medical field, have not been swift to dump medicine and machines on us. Instead, they have encouraged us to watch Luke and let him tell us what he needs.
What Luke has conveyed is that he needs a vent. Whether for this season or for long term, whether just at night or all day long, his body is expending a great amount of energy to keep him breathing.
So he's tired. And frankly, we're tired, too.
So here we are, hospital-bound for the third time in six weeks. But for maybe the first time, I left Dell hopeful. A Trilogy 200 ventilator has already been ordered and should arrive in a day or two. Once Luke is stable (we are still testing for infection, though so far he is clear) and we learn how to set this vent to his needs, we will come home again, with yet another machine. And I am excited.
You see, in just a matter of days, Luke has demonstrated increasing strength. He uses his arms to push off my chest and stare at my face. He has rolled himself completely to his stomach and endured tummy time without complaint. He pushes more strongly with his legs and even stood to his knees during trach care one day (he was frustrated and trying to escape, but we appreciated his feistiness!) His oral exploration is increasing, and he licked a kale chip till it was soggy two nights ago. He has decided that he prefers to be held and expresses his discontent if I've left the room. He giggles (silently, but I know he's laughing!) every time his brother talks to him. And his nurses have to turn him my direction when I'm in the room or he flips out of their arms trying to see my face. For an infant who has spent nearly half his life in a hospital, I am amazed at his emotional connection to his family. He continues to gain weight, grasp toys and smile sweetly.
All this while working harder than normal to simply take a breath.
So I am excited to provide him with respite. I am anxious to give him some relief while his little body heals from all he has experienced in such short time. His lung tissue will continue to replenish into late childhood, so we have hope that he will someday outgrow his needs for such assistance. But if we can give him a shoulder to lean on in the meantime, we are thrilled to do so.
I have considered that in some ways these last weeks have been one long, dark night. We have so many reasons to rejoice, but I have lived in a fog of frustration. We feel the weight of Luke's weaknesses and sometimes fall beneath it. But each night as I am awake with him, I am reminded that God's joy comes in the morning and His mercies are new every day. He has gifted us renewed strength each day despite severe lack of rest. He is not bound by the fragile needs of our bodies or Luke's. His will and His design are GOOD. And He is giving us good gifts.
I miss my son tonight. But I will see him again tomorrow, and we will look ahead to bringing him home renewed and with more sufficient ways to care for him. I excitedly anticipate how Luke will grow more and more as he is given all the rest and support he needs during this time. I see a new day ahead of us that makes all the nights worth enduring. So for now, we all rest.
The last three nights, however, have been especially frustrating. My patience is drained, and though my heart aches for the needy child I hover over in the dark, I am filled with hopelessness that we will never see the end of this stage. I have cried out each night in anger as I am pulled again from a glimmer of sleep and am reminded that my son requires help because he is in distress. The last three days he has shown random signs of illness: elevated heart rate, pale and sweaty skin, vomiting, and labored breathing. He wouldn't do all these things at once or for very long, but we were watching him carefully. Sure enough, last night around 7 he began exhibiting all these symptoms continuously. We decided to wait through the night because we already had an appointment in the morning at his Trach Clinic, which is at Dell Children's. I'll admit a small part of me was not ready to make another late trip to the ER. Especially just 3 weeks after the last one. But the next morning rolled around, our nurse arrived, we packed up the car and left. Then immediately we pulled over because Luke started turning blue. I grabbed his Ambu bag and threw open the back door to help. Thankfully, Luke seemed to simply be holding his breath a bit in his frustration and we were able to calm him down. He recovered, and we hit the road while I prayed that the morning traffic would be light (It was!). On the way to the hospital, I called our Trach Clinic nurse (I truly believe Katie Dillon might be an angel.) and let them know Luke wasn't in good shape. As soon as our doctor saw Luke, he told us to check in through the ER to be admitted. Katie escorted us through (we have learned that Luke is seriously high priority for ER service and have never waited for help) and soon Jack, our nurse, Luke and I were filling in a small exam room. To make a long story short, Luke got worse before he got better, but we had him on vent support and settled into Pediatric ICU by noon.
Over the course of Luke's short life, we have begun to notice a pattern with his respiratory needs. In June, we were told a jaw distraction was a positive next step to allow Luke to breath on his own. Indeed, the surgery was successful in pulling Luke's tongue away from covering his airway and we enjoyed 8 weeks at home with our son with minimal intervention. But it was soon apparent that he was not successfully breathing on his own and we were hospitalized again, enduring a tracheostomy. A few weeks post-surgery, we were able to take Luke off the vent and we have been home since using only oxygen support. However, in this season of respiratory illness, it is once again clear that Luke is not living well with the supports he has.
Doctors have not once tried to tell us that the current solution will solve all our problems. There has always been a cautionary air to our conversations. Even back in June, we knew that a trach and/or a vent were possibilities. Yet our doctors, despite what some may say about those in the medical field, have not been swift to dump medicine and machines on us. Instead, they have encouraged us to watch Luke and let him tell us what he needs.
What Luke has conveyed is that he needs a vent. Whether for this season or for long term, whether just at night or all day long, his body is expending a great amount of energy to keep him breathing.
So he's tired. And frankly, we're tired, too.
So here we are, hospital-bound for the third time in six weeks. But for maybe the first time, I left Dell hopeful. A Trilogy 200 ventilator has already been ordered and should arrive in a day or two. Once Luke is stable (we are still testing for infection, though so far he is clear) and we learn how to set this vent to his needs, we will come home again, with yet another machine. And I am excited.
You see, in just a matter of days, Luke has demonstrated increasing strength. He uses his arms to push off my chest and stare at my face. He has rolled himself completely to his stomach and endured tummy time without complaint. He pushes more strongly with his legs and even stood to his knees during trach care one day (he was frustrated and trying to escape, but we appreciated his feistiness!) His oral exploration is increasing, and he licked a kale chip till it was soggy two nights ago. He has decided that he prefers to be held and expresses his discontent if I've left the room. He giggles (silently, but I know he's laughing!) every time his brother talks to him. And his nurses have to turn him my direction when I'm in the room or he flips out of their arms trying to see my face. For an infant who has spent nearly half his life in a hospital, I am amazed at his emotional connection to his family. He continues to gain weight, grasp toys and smile sweetly.
All this while working harder than normal to simply take a breath.
So I am excited to provide him with respite. I am anxious to give him some relief while his little body heals from all he has experienced in such short time. His lung tissue will continue to replenish into late childhood, so we have hope that he will someday outgrow his needs for such assistance. But if we can give him a shoulder to lean on in the meantime, we are thrilled to do so.
I have considered that in some ways these last weeks have been one long, dark night. We have so many reasons to rejoice, but I have lived in a fog of frustration. We feel the weight of Luke's weaknesses and sometimes fall beneath it. But each night as I am awake with him, I am reminded that God's joy comes in the morning and His mercies are new every day. He has gifted us renewed strength each day despite severe lack of rest. He is not bound by the fragile needs of our bodies or Luke's. His will and His design are GOOD. And He is giving us good gifts.
I miss my son tonight. But I will see him again tomorrow, and we will look ahead to bringing him home renewed and with more sufficient ways to care for him. I excitedly anticipate how Luke will grow more and more as he is given all the rest and support he needs during this time. I see a new day ahead of us that makes all the nights worth enduring. So for now, we all rest.
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