broken glass lenses…

•October 15, 2015 • Leave a Comment

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Have you ever met someone who has been through hell in their lives but you wouldn’t know it unless they told you? When you find out that they have faced terrible circumstances, like the death of their loved one, or facing cancer, or severe disabilities in their children, your heart breaks for them and you cannot imagine how they made it through. But then you also are amazed by the fact that they so full of humility and joy, like what you would expect from someone who has had an easy road. They have a right to be upset and burned out by life, but instead they seem to have a different amount of joy than everyone else. If you are like me, you might even look at them and tell yourself that they “just must be better people than me.” But as God has been teaching me about survival mode and our struggles, He recently showed me something that has changed things….and he used my job to do it. Let me explain…

As many know, I work in the audio-visual event production world, meaning that I work to plan, design and produce the technical elements for various events, from large arena events to small conferences and meetings. When you are planning an event that will be on a stage, one of the most important elements that you must take very seriously is the lighting. You can just put some white light on the people on-stage, but it will be boring and you miss on an opportunity to “raise the bar” of your event. But when lighting for the stage is planned very intentionally, it can literally be a work of art. The lights work perfectly with the audio and video and the people watching are drawn in and have an amazing experience. And one of the most key pieces of lighting is the use of colors and patterns and today’s high tech lights can do things never possible before. Colors can be blended, patterns can be added and everything can even be put into motion, all from one light and with one flick of a switch. But with older lights, all of the colors and patterns had to be planned ahead and literally installed into the light before the show started. The lighting engineer not only had to know how the various colors would interact but also how to use them to produce their desired lighting effect. And that’s where it relates to pain, struggles and my journey.

F4D5C1A19EAD4EEEB376AEFAB6297879When a lighting engineer would work to create a certain effect, he would use various filters that would add different colors and patterns to the light. He would “stack” the colors on top of each other and then shine light through them to produce a blended color, like putting red & yellow together to make orange, or blue & red to make purple. And by placing a filter on top of those with patterns in them, you could project colored shapes and patterns on stage. Some of the most amazing things I have seen on-stage literally came from the lighting only, without any help from anything else. The stage literally changed. But, another reality that the lighting engineer had to watch very carefully would be how many filters he would use because using too many would not only muddy up the lighting but also would stop the light from reaching the stage. Each filter removes a small amount of light and numerous filters add up to a reduced light projection. If they wanted to use a large number of filters, they needed a stronger light to project through them. Makes perfect sense.

And what I think God showed me is that those people who amaze me with their “grace within the valley of hardship” are like those lights. Their hardships that I have always seen as impacts on their lives are actually filters that have been added to their lights. One hardship adds a certain hue to their lives that will never go away. Adding another hardship down the road will literally change them for good but will create a new color. Another difficulty may look like it has cracked and broken them, but in reality it is adding a new texture. All of those hardships and trials have changed the person for the better, but more importantly it has changed their impact on those around them by shining a new beauty from inside of them. But, why some people seem to just radiate more brightly or more colorfully is not only because of their hardship filters, but also because of their source of light. Rather than trying to shine by themselves, pushing through and facing their hurdles on their own, they turn to a different and more powerful source.

In John 8:12, Jesus says, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.” And in Matthew 5, Jesus is speaking to His followers when he said, “You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.” (Matt. 5:14-16) It is clear that the Lord not only designed us to be lights to shine on the world around us, but He designed us not to be able to do it by ourselves. Yes, we have a light that we can try to shine on our own, but it is so weak that it will be snuffed out after a few trial filters are introduced into our lives. But if we stop trying to do it ourselves, and turn to the ultimate source of life and light, He will shine through us. And the trials that we face and struggle through, while unpleasant and difficult, can end up being the most beautiful works of art that those around us see.

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putting up curtains in the bunker…

•October 1, 2015 • Leave a Comment

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I have mentioned in the past how our family has been in survival mode for a while and how we fight to keep our heads above water at times. Right now, Timmy has 2-3 different types of therapy sessions every week, along with daily physical and occupational therapy exercises to do every day. We are failing at our attempts to get him shifted from using oxygen every night to using a CPAP instead, hopefully moving him closer to the day when he no longer needs breathing assistance at night. We are also struggling to teach him how to eat by mouth, running into roadblocks caused by his weak muscles and the ease of simply feeding him by his stomach tube instead. His daily medications are hit or miss and we find out that he needs to learn new ways to sit up, lay down or crawl. Abbie & Zach are back into school and both have projects, assignments, homework and things that need to be signed “right now.” Meanwhile, JT started preschool and we hardly noticed. My babies are growing up so fast and I am missing it. Then one of them brings home a biological present from school and the entire family begin to drop like flies, with one getting better as another gets sick. Vacation and sick time are dreams, being spent nursing sick kids or running them to whatever appointment(s) we have that week. It feels so overwhelming at times…and that is why we are in survival mode.

Like most parents who have been where we are can attest, survival mode can feel like you are in a bunker, holding up and surviving as life barrages you. You won’t give up and you pick off every challenge that comes your way. Yes, there are days that you hit the wall and find yourself weeping over the smallest thing, but you still keep going. You are a badass and there is NO way that this is going to stop you. But, this survival mode not only changes your daily operations, but the way you think as well. Yes, you become tougher and find out that you have so much more to you than you ever thought possible. But “hunkering down” for a long time can begin to change the way you see life itself, making you see it as something to survive, not enjoy or thrive in. I spend more of my energies simply trying to get my family to bedtime every evening, missing opportunities to make memories because “I am just trying to keep my head above water.” Weekends are spent at home “resting and recovering” but in reality you are bunkering down. You have stopped living because you are surviving. And at times, that’s what you have to do. When your child is in the NICU for months, your life virtually stops and you do whatever it takes to be with them. But that mindset can easily follow you home and take permanent residence in your heart and mind, like the crazy relative that comes to visit and never seems to leave.

I have always thought that survival mode was a time of hunkering down that would have a definite beginning and ending, both thrown on like a switch. When Timmy was born two months premature last January, it was an instant event that superseded everything else in our lives and marked a definitive start to survival mode. But I keep waiting for the time to come for us to switch it off and it just doesn’t seem to come. Every time Treshia & I begin to talk about “getting out of survival mode and starting to live life” again, something else happens and we run back into the bunker. I keep trying to switch it off but life keeps switching it back on again. I do not want to live like this forever, but it feels like we can’t leave. Is this what life is going to be like from now on? Should I start decorating the bunker?

But just recently I feel like I have begun to see things a little differently. Yes, I still feel like we are still in survival mode, but instead of seeing it as something that eventually end, I have begun to see it as our life. No, not some kind of depressing “Life sucks and then you die” type mentality, but seeing it as a new layer added to our lives. B6A4983EACA34D129A52EEEDB6603D4DLike an artist who paints with watercolors uses multiple layers of paint to create a masterpiece, I am seeing our lives as a work of art in process. When we got married, Treshia & I began to lay down the base layer, starting a new family with various priorities and passions. Then Abbie came along and we began to start working with colors, slowing changing our family artwork. Zach came along and brought a new pallet with him, adding new aspects. Then JT came in with his bright and loud tones, adding depth to our work. But instead of putting away the painting when Timmy surprised us in January, I now see that he is a new layer of paint that has not only added to the overall work of art, but has changed all of the other layers as well. Just like adding yellow paint to red paint creates a whole new color, our precious Timmy has changed all of us to our cores. We are not surviving, we are changing and becoming more beautiful. Yes, it is hard to change but it is not something I need to fear, fight or survive. And like the artist who steps back from his masterpiece to see how it is developing, I think I need to stop and step back too. I need to look at how we have changed, how we have grown and see the hand of the master artist in it all. I need to see the new colors, the new shades and the new depth of our family masterpiece. No, this isn’t going to way I had wanted it to go, but I am not the artist.

So, yes, I am going to begin to decorate. And I know what painting is going to go over the mantle…

…but i’m not there yet…

•June 30, 2015 • Leave a Comment

I don’t know about you, but I love goals. Getting to the end of a project and completing it is truly one of the most satisfying things I can think of. Goals=achievement. Goals=success. Goals=good.

The same thing holds true for sports as well. Scoring in soccer? Awesome. Beating the goalie in hockey? Amazing. Hitting a home run? Nothing like it. Again, goals are good. They help us measure how we are doing against a specific standard, established by us or by others, and they give us an idea of how far we have to go if we haven’t achieved it yet. And I have always lived by goals and have been hard on myself when I fall short of them. For me, one of the biggest lies I have fought with my entire life is the lie that “Those who fail deserve to be punished.” So when you combine those two things together inside of me, you get someone who is highly motivated to achieve, who is constantly monitoring to make sure things are going right and who is very harsh when things fall out of line. Or, you get the other half of me that sees the task as impossible to achieve perfectly and gives up before even starting, to avoid failing.

And while this system has caused me to bail out on some amazing opportunities in my life, it also has served me relatively well. I avoid the unknown and work my hardest to control that which is known in front of me. This system kept me single for thirty years and nearly robbed me of the biggest blessings of my life. Under the guise of “waiting for God’s best”, I avoided relationships, subconsciously knowing that they would inevitably lead to the known and would take me out of my comfort zone. But even when the Lord opened my eyes and I married my best friend, I fought to remain in control. Everything Treshia did that was not how I wanted was a point of anger and contention. And having children? NO way. “We weren’t ready for them yet.” Translation: I can’t control them, so I will fail miserably if we have kids. Better to avoid them altogether.

But God blessed us with our first little miracle in Abbie, who was born in 2004. From the moment I held her, my goals changed. It was no longer about me and my goals, but it was about her and protecting and providing for her. Or so I thought….but the reality was my goals had been re-written, but by ME, not God. But I had my goals in front of me and worked hard to achieve them. Two years later, Zach arrived and fell into the same set of goals. Walking, talking, reading books…all by a young age and all while showing brilliance and beauty. Even five years later, when we found out that we were pregnant again (this time with JT), my plans had slipped but I felt like I could still keep things in line and under control. But as you probably know from our previous posts, things completely changed when we found out in 2013 that we were pregnant once again and this time with a little boy with Down Syndrome. Down Syndrome was not something I could control or plan for, no matter how hard I tried. This could affect every single aspect of my unborn son’s life and there was nothing I could do to change things. And when our Timmy was born in early 2014, two months premature, we started to walk a new path of uncertainty and complete lack of control. Goals? Those were virtually thrown out of the door. Now we would simply have to walk the path everyday, taking each step as a new one, not knowing what was in store next but praying that God would help us when we came to the next challenge. Successes would come, but so would feelings of failure. I wasn’t in control! I couldn’t do anything. Without my goals to help define how I was doing, I felt like a failure.

But recently, the Lord bought a question into my head that I have been chewing on and want to share.

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“What if the goal is not to complete the task or journey, but the journey itself is the goal?” What if getting up every day, facing the unknown every moment and not being able to measure myself up to anything is actually what I am supposed to face? No measurements, no standards, no successes, but also no failures. Just simply living. Taking what the Lord brings to me every day, trusting Him to give me the tools and abilities to face that day’s challenges, and remaining thankful for whatever happens. For some, it sounds like a normal thing. But for someone like me, it sounds like a virtual exercise in hell. With no standards, there can be no success and with no success, there is only failure. Sick isn’t it? And that is where the lie manipulates and does its most damage. If I try to control the impossible, I fail. But if I let go, the lie tells me that I fail. Either way, I am doomed. And I wish I could tell you that I know the solution and have achieved victory over this lie. I try to bring my daily struggle to the Lord, and remind myself that simply following His leading is my goal, but I always seem to find something to beat myself over. But recently, I have begun seeing the lie more and have been able to fight it. Will I ever beat it? Probably not, but it is part of my journey and my goal is to keep moving ahead.

i almost missed it…

•June 5, 2015 • Leave a Comment

Can I be honest with you? Like virtually all parents, when we found out we were pregnant with each of our four kids, I prayed the same prayer. I asked God to bless that little one developing inside of my wife. I prayed that He would protect my child, that he would bless them with health and a full term stay in the Hotel Mommy. I even would ask God to let them come to know Him as their Lord and Savior early in their lives and that they would walk closely with Him their whole lives and not run away from Him like I did in my youth. But where my honest confession comes in is that I prayed one more prayer: I begged God to not give me a disabled child. Yup, I pleaded with Him for it. And the reason was that I simply could not imagine myself handling a special needs child. I did not think I had it in me and I feared how badly I would do raising a physically or mentally challenged child. But if I continue to be honest, I did not want to deal with the extra challenges. I knew what my limits were and was more than willing to tell God what they were. Then came my precious Timothy. On August 30, 2013, I got a phone call from Treshia’s doctor that changed everything when I found out that God had given me exactly what I had begged Him not to….he gave me a boy with Down Syndrome. But wait, I clearly told God through three other pregnancies that I could not handle a special needs child! I can’t do this! I can’t handle it!!

IMG_8492But you know what? From those prayers two years ago to now, I have learned an amazing lesson. I found out that my Timothy, and all of the challenges, difficulties, fears, victories and the rough road that we have had to walk is EXACTLY what I needed. And I was right…I couldn’t do it. I couldn’t handle it. This past year or so has been the most difficult of my life but the best one too. I am not joking either. THE BEST. Why? Because the very thing I begged God not to give me, and the very thing I could not handle, has become the thing that has driven me to rely on God. And while it sounds like such a cheesy cliche, He truly has given us the ability to do the impossible. No, I am not climbing tall buildings or stopping trains with my bare hands like Superman, but I am not only raising four children (one with special needs) but we are thriving. I can honestly tell you that I have grown and matured more over this past two years than the other 41 years combined. My wife has grown and become such an amazing mother and partner. And my two oldest children, Abbie & Zach, have become so much more tender, loving and aware of others. And they have watched us struggle through our challenges and have seen us break down in emotional and physical exhaustion and turn to the only source we had left…the Lord. They have seen, and experienced, an incredibly loving Abba Father come alongside us, strengthen us and carry us through. They really have.

Growing up in the church, I heard so many stories like ours and thought they were such cheesy Christian cliches. “I was at the end of my rope and God lifted me up and carried me through.”

“Give me a break!!”, I used to think. “God gave you the strength long ago but you never had to use it until now and you just found that strength inside because you had to and pushed through.”

Wow. That is so embarrassing to admit now. How wrong I was. How insensitive and how insulting to the Lord. But now I understand how wrong I was. I truly believe that I was right in my prayer with my children….I really didn’t have the ability to raise a child with special needs. It wasn’t there. I have hit the wall SO many times this past two years that I can say that without hesitation….I could not do it. But it was God who gave me the strength and ability to carry on and do what I could not do on my own. A daily miracle in my life. He gave me what wasn’t there before. And he changed me to become a better man, a better husband, a better father and a better child of the King….all by giving me what I did not want. In Romans 8:28, it says

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

I always read that verse before and was so confused because I would see those around me struggling with things like cancer and such and would wonder, “How is that good? I know God is working, but it isn’t good.” But now I see that verse in a very different light. Now I see that while I would never label things like cancer, disasters or even Down Syndrome as “good” things, I see that God uses the very things I hate and dread as ways to bring us closer to Him by making us rely on Him. If we don’t rely on Him, we won’t make it. But if we do, He works the impossible and walks with us and gives us the ability that was not there before. And we are better for it.

Now that’s what I would call the very definition of GOOD.

the fraying rope…

•April 30, 2015 • Leave a Comment

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Burnout.

What an ugly word. And there is NO way it could describe me and my family, right? I mean, 2014 was a really tough year, but we are past the worrying whether Timmy is going to make it and he is doing a lot better. Right? And compared to others who are facing much more difficult situations, like cancer and such, we have nothing to complain about. Burnout, no way. But then why do both my wife & I, and even our kids, show all of the signs of burnout?

Webster’s dictionary defines burnout as:

burnout (\ˈbərn-ˌau̇t\) – exhaustion of physical or emotional strength or motivation usually as a result of prolonged stress or frustration

Exhaustion of physical strength? Pretty much. We both feel like sleeping so much and ulcers tend to be a pretty good sign of stress and a difficult situation, right?

Exhaustion of emotional strength? BIG time. Almost every thing that happens wrong, both at work and at home, seem like almost impossible problems to overcome. Before 2014, things that we would have dealt with and moved on are constant sources of tears and angst. Heck, even my prayers just seem to hit the ceiling and fall with a thud on the floor, and that’s when I have the motivation to even pray. And speaking of motivation….

Exhaustion of motivation? My desk is trashed. My room is trashed. My house is trashed. And I can’t find the strength to clean it and keep up with it. And why do four children now feel like a army brigade? I can’t keep up. I can’t….

And reading that, part of me still wants to deny it. That voice inside my head tells me, “Suck it up! This is nothing. You are being a baby! There are people facing things much more difficult than you are and they are making it, so push on.” But even as that voice screams in my head, part of my heart cries and dies just a little more. I want to be strong. I want to push on. But I feel like my knees, emotional and physical, will collapse soon. But I HAVE TO keep going. Treshia, Abbie, Zach, JT and Timmy all depend on me to do so. I have no choice…

When I looked online for recommendations, the majority of publications seem to have the same solution to burnout: reduce or eliminate the stressors in one’s life. Wow, talk about salt in a wound. I can’t reduce the stress! I cannot just heal my baby boy and make everything OK with him. I cannot eliminate our ignore our mountains of debt that require both of us to work full-time just to make ends meet. And I cannot stop traveling for work because it is what I love most about my job and is a huge part of my job responsibilities. Abbie & Zach have been so strong, but they need Mommy & Daddy to help them deal with their dramas and stresses at work and home. And JT is three, so he is nothing but a overcharged ball of energy, love, noise, joy and frustration. But how many times can we both beg our bosses to let us work from home, in desperate attempts to reduce our burdens and not have to put on a public face of strength for coworkers when all we want to do is cry and sleep? I have no choice…

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I feel so fragile. Every comment at work can be a source of burden, of draining or worry that haunt me and I cannot seem to muster the ability to overcome them. Others’ passing comments become my obsessions. Internal overreactions seem to a way of life for me now, with myself internally envisioning myself pummeling someone who slightly offended me, dumping months and months of stress into the side of their head. But of course I don’t do it and I beat myself up for begin some kind of monster for even thinking such thoughts. And one more weight gets thrown on my emotional cart. I just want to run, but everyone needs something from me and I have to be strong for all of them. I have no choice…

In Matthew 11:28–30, Jesus said, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Forgive me Lord, but where is this rest? This burden does not feel light….it feels so overwhelming! I want to be strong, I want to draw my strength from You, I want to find peace and rest in You, but I can’t. Heck, I can’t even hear You. And I am so sorry that the little blessings and moments of escape You give me don’t seem to be enough. Forgive me Lord. I am not strong enough. I can’t do it. I don’t know what to do, but I beg You to give me the strength to take my next step…and then the one after that. Right….Left….Right….Left….

i miss the nicu…

•March 24, 2015 • Leave a Comment

“Dad, can you tell Zach to stop bothering me?!?”

“Dad, can you make me some lunch???”

“Dad, why can’t I have some ice cream???”

“Dad, why….???”

“Dad, what…???”

“Dad, when…???”

I miss the NICU.

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With a family of six, there is always something happening and a Daddy’s job is never done. Making dinner, putting out fires, stopping fights, comforting tears, praying at bedtime, changing diapers….you know the drill. In contrast, the NICU was so much quieter and less chaotic (most of the time). My son had his normal routine, his normal nurses and he was isolated in his little NICU pod. If there were feedings to do, or diapers to change, or fires to put out, the nurses and doctors took care of them. Sure, the anxiety and worry never left the pod either, but it was less crazy and chaotic than home. But you know what? That’s not why I miss the NICU though. If I am honest, I love being a daddy at home. Sure, there are days that I need a break and cannot wait for my next business trip, but I wouldn’t trade it for anything in the world. Seriously.

You know why I miss the NICU today, even one year later? Intimacy. That’s right, intimacy. In the NICU, amidst the anxieties and such, I experienced intimacy with my son like I have not had with any of my other children. With Abbie, Zach and JT, they all were born by c-section, spent 1-2 weeks in the hospital and then they came home and entered our normal home routine. Especially in the case of my third child, Jackson, he was thrown into the normal daily chaotic stream of the Kuiper household.

“No stopping for you kiddo! I can change your diaper, but then I have to go play with your brother, or help your sister with her homework.”

But with my son Timmy, everything changed when he was born eight weeks early and spent the next three months in the NICU. He was not thrown into the chaos at home, but was isolated from it. While our family worked through dinners, and homework and laundry at home, Timmy fought for his life and for growth in the hospital. And while our lives were thrown into disarray as we juggled the four different lives of school, work, hospital and home, Timmy soldiered on. Every day, Treshia would visit him for half a day, then I would come and spend the other part of the day with him. It was crazy and extremely difficult, but I miss part of it.

I miss the intimacy at the hospital. When I would arrive at the NICU, I would check in, wash my hands, walk to my son’s little pod-room and the world would fall away. I would sit and hold my tiny baby boy for hours at a time without interruption. There was no chance of interruption from his sister and brothers and there were no fires that I was responsible to put out. All I had to do was “worry” about loving on my son and bonding with him. 4-5 hours of pure intimacy with my boy. And that’s what I miss about the NICU.

I wonder if the Lord feels this same way about the time I spend with Him each morning? In the midst of my crazy-busy life, it is SO easy to let my daily quiet time to get caught up and lost, like my son Jackson coming home from the hospital. Soon, I am “too busy” or “too tired” to take that isolated time and it is forgotten. Meanwhile, God longs for those intimate times when He can get me away from the pandemonium, hold me, and pour into His child. So maybe the NICU is what I need everyday?

a rough day…

•March 20, 2015 • 2 Comments

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Nauseated, terrified, shaky, helpless.

Those words seem to be about the only way I can describe how I feel right now. I have so much fear and trouble inside of me that it feels like it is about to pour out and I cannot stop it. I want to cry, I want to scream, I want to yell, I want to hit something, I want to run and run and run. But I cannot. I know I must eat, but the thought of any food makes me nauseated. So I sit here, waiting for my cellphone to vibrate with a message from the doctor. I feel so helpless. So powerless. So out of control.

The idea of my tiny little baby boy in surgery brings tears to my eyes and a cry that wells up from my heart. As they prepared Timmy for his “procedure”, they gave him some drugs that would help simulate sleep conditions, putting him under enough for them to monitor him, but not as deeply asleep as under anesthesia. Unfortunately, the drug is very slow acting, taking up to 45 minutes to kick in. At first, Timmy seemed to be OK, but within twenty minutes, he began to struggle badly. He began to trip out pretty badly, losing control of his body while trying to fight falling asleep. He cried in a way that I had never heard before, a desperate, pitiful cry for help from his mommy, who was holding him. Both Treshia & I wept as we heard our precious boy fighting, knowing it was best for him but also knowing he was so uncomfortable and there was nothing we could do for him. Again, I felt helpless…and so out of control.

As we spoke with each of the doctors who will be operating on Timmy, we heard each of them describe what they would be doing during their portion of the operation. They described a variety of procedures, virtually all of them ending with a “but we don’t know until we get in there” type of line. We tried to be patient as each of them politely deflected our desperate attempts for some definitive answers, knowing that there are too many unknowns to know anything for sure. “Will he stay here tonight?” “We really don’t know until we get in there.” “Will he be able to breathe better when he recovers?” “We really won’t know until we get in there.” “How long will it take?” “We really don’t know until we get in there.” I don’t blame the doctors, as they really do not know until they get in there, but I hate their answers. I hate that I do not know. I hate that I cannot do anything to help my boy. So out of control….

And there it is…

The call came in from one of the doctors and it looks like they ended up doing the part of the surgery that we had feared about the most. Observation became operation. Probing became cutting. And our fears became our tears. The pressure, the prayers, the fears all rushed out and there was no holding it back….and we didn’t try. Treshia & I held each other and cried. Our baby boy, our precious fighter had been cut and he will hurt. Pain. I am so sorry son. I am so sorry.

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Five hours…

Wet, pain-filled, half-asleep tears. He is in pain and there’s very little I can do for him. Mommy rocks him and tries to comfort him with love in tears, but it is not enough. Nothing would be enough. Timmy is in pain and cannot get away from it. Even the doctors cannot do any more, knowing that more pain medication could make his breathing problems worse. I will do anything. I want to yell, I want to beg, I want to rip that pain out of him and carry it myself. I am so helpless. Even my prayers feel like they are bouncing off the ceiling and crashing onto the floor. I am still so out of control…

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Fifteen hours…

It is 3am and fifteen hours after surgery. Yet another alarm has awakened me from my sleep on the floor and it is amazing how the three months in the NICU last year have come back. Oxygen pump? No. Feeding pump? No. IV pump? Yup, that’s it. I silence the alarm, call the nurse and then check Timmy….he is soaked. Looks like his diaper gave its all but Timmy kept giving. So, I work with the nurse to change him and then hold my baby while she changes the bed. As I hold him and rock him, he settles down and falls asleep again. Finally, something I can do. I am still completely out of control, and feel so helpless to do more, but for now I am doing what I can. Go to sleep Timmy. Daddy is here.