2

Sisters

I’m pretty sure that when Matthew gets bigger he is going to have a Love-Hate relationship with these two crazy sisters of his. It is incredible to see the love that they have for him. The poor kid has 3 Moms!

Ruth acts more like a protector than anything. On occasion, she will ask to hold him, but more often than not, she is looking out for him.  When his pump beeps that obnoxious beep at the end of his feedings, Ruth shouts from wherever she is in the house “Matthew’s done!”, as if he’s a roast in the oven. If he’s crying, she runs like a crazy person through the house shouting “Matthew’s crying! Matthew’s crying!” until she makes eye contact with me and knows that I’m on my way to save him. When he wakes up, she is the first to sound the alarm, “Matthew’s awake!”

hospital

Erynn acts as his comforter. That sweet little boy knows her voice and settles down when she speaks to him. If he’s crying, Erynn will come over and stroke his head while saying “It’s okay buddy. It’s okay.” And, almost every time, it settles him. He turns to her and smiles. And, she just keeps talking to him. “Don’t be sad buddy. I’m right here.”watchful

When he is upset, she wants to understand why he is crying and what she can do to help. She wants to hold him and sing to him every day. If it’s time for him to eat, she wants to help. She tries to give him a bottle. She helps put his medicine into his NG tube. Erynn  can’t wait for him to be bigger so that she can teach him how to roll in the grass and to play with the trains and how to go down the slide and swing. She’s going to read him stories and they are going to build things with the LEGOs together. Yesterday, she was telling me all about how much he’s going to love working in the yard with us. “We can all plant plants as a family!”

feeding

He isn’t going to be getting into things as a toddler because they are going to be right on top of him, making sure that he plays safely. He won’t be sneaking out of the house or off with a friend as a teenager, because those girls will be dragging him back him by the ear. They have so much love for him! They understand, somehow, that he’s different. But at the same time, they see his differences as a temporary thing; as something that he’s going to grow out of. I love that about them. They are going to give him every opportunity to be everything that he can be.

They have big plans for him. I can’t wait to watch him grow and play with his sisters.

1

Music

When life gets you down, there is usually something that you turn to to help you through it. Some turn to alcohol. (Your liver would like to have a talk with you.) Some turn to smoking. (Your lungs would like to have a talk with you, but can’t.) Some escape in a book. (Your brain thanks you.) Some eat. (Your tummy may or may not be thanking you. What are you eating?) When life gets me down, I like to turn to music and exercise. I pick up the heavy weights when I’m particularly irritated by something. Music, however, music has a way of telling the story of our lives. Music is therapy.

I like to think of myself as a musical person. Not that I can sing or play an instrument. Those genes were passed on to my brother. But, I still associate music with events in my life. In college, when I was driving to campus for an exam, I would pop in a Beatles album. I love the Beatles. Singing along with them helped me to not stress about the test. It gave my mind a happy place to go while I drove. After the birth of each of my children, I’ve sang The Beatles “I’ve just seen a face” to them. After all, I had “just seen a face. I can’t forget the time or place where we just met.”

With Matthew, I prayed and read my Bible, but I found the most comfort in music. I’ve always disliked Christian Radio. It was just too cheesy. I wanted to hear the songs that I sing in church.  I turned to YouTube and found that a local radio station played a few songs that I like pretty regularly. Between the two, I was getting the comfort that I desired. There are a few songs, though, that I associate with the time Matthew was in the PICU, more than any other.  The first is Leelands “Carried to the Table.” The lyrics hit home. I felt broken. But I also knew that I was cradled in His arms. Oh the familiarity of knowing that you aren’t worthy to be in His presence and yet He doesn’t leave your side!

Another song that plays over and over again in my head is Hillsong’s “Cornerstone.” It’s a nice reminder that there is a purpose to it all. It is helpful to sing to God that my hope is in Him, that He is my strength through the storm. He meets me in my car, while I’m singing loud and off key with the tears flowing and tells me “I’ve got you Julie. Rest. Continue to trust in Me alone”

The final songs on the playlist for this stage of my life are Keith and Kristyn Getty’s “In Christ Alone.” and Jeremy Riddle’s  “Sweetly Broken” I’ve got a wonderful husband and loving, supportive family and friends, but it is God who is carrying me through this journey. He is my cornerstone. He is my comforter.  I am sweetly broken, clinging to the cross, lost in God’s love. These songs reminds me what it is that I’m working towards and Who is waiting for me at the end.

And so, I sing on in my off key voice, with my children saying “Oh Mommy. It’s just on the radio” worshiping the God who called me, who loves me, and who carries me through it all.

2

On Solid Ground

When we first made public to friends and family that Matthew was in critical condition and diagnosed with OTC deficiency, we received a lot of much needed prayers and support. One comment in particular kept popping up, in various forms. “Your faith is inspiring.” ” You are so strong.” Something along those lines. I’ve got to be honest with you all. I didn’t like reading that. I was truly bothered that people thought I was somehow strong or faithful or inspiring. I sure didn’t feel that way. I felt like I was hanging on by a thread, like I was walking through my days without focus. Sure I prayed and I read my Bible, but I also cried and questioned God.

And so, one night, I’m washing dishes and Rusty is working at the computer and I tell him my feeling on those comments. I tell him that I don’t feel worthy of them. I truly felt like Job. I know. It’s said all the time. We all reference Job any time we are going through a struggle, but at that point in time, we were facing losing our baby, the end of employment, and losing our home. That story was hitting a little too close to home. Anyway.. Rusty thinks for a minute and agrees that the comments are uncomfortable but then he says something that I will never forget. He says “Babe.” (He calls me that sometimes) “People are always referring to the middle of Job where he is struggling and questions God, and people refer to the end of Job when God corrects him and Job gets his life back, but no one ever mentions those first few verses. God said ‘Have you considered my servant Job?’ God knew the end before the beginning. He sees us in our past, present, and future. He sees us perfected.”

Yep. My husband is pretty awesome.

I still struggle with those comments. I don’t feel like a “holy Christian.’ (Because, unfortunately, there are those within the church that make us feel like we have to do certain things to be ‘holy’ instead of remembering that we are all made perfect through Christ and that we are all in different locations on the same journey.) However, I maintain my faith. There isn’t a way to get through the day to day, without the knowledge that God is perfect and His ways are perfect and everything that we are going through is for His glory. My prayer has always been that our story, our temporary struggle, will be a guiding light for someone, that through it all, those around us will see Christ and be drawn to him.

So, if you are reading this and you are wondering “What in the world is this crazy lady talking about? God can’t help me.” or “I’m too far gone” or “If I walked into a church right now God would strike it with lightening. I’ve got to get my life straightened out first.” Please, PLEASE, don’t let the world confuse you. God knows you and loves you EXACTLY the way you are. I’m not perfect. I never have been. I could tell you some stories! (But I won’t because my parents read this and they still think that I’m ‘the good kid’) God doesn’t expect us to be perfect. We are all just flawed humans. But, in our walk with Him and our faith in what He has done, we are made perfect; even through our continued moments of imperfection. If you feel even the slightest curiosity, respond to it. Pick up a Bible and just start reading. Honestly, a lot of times the stuff in there still doesn’t make sense to me. But it’s a living book. It will always have something for you. Find yourself a church that teaches the Bible. Learn who God is and what He has done for you. Because, once you know in your heart that He loves you, that you are His child, there isn’t anything that life can throw at you that you can’t endure. Why? Because you will no longer be enduring it alone. He carries us. He has carried me this far, I know that He won’t let me down. There is something amazing waiting for me at the end of all of this. Something that is worth the heartache. God has something amazing in store for you too.

Okay! That wasn’t the original intent of this post, but that is what came out. Do what you want with it. Someone somewhere needed to hear that.

Being a Christian isn’t about what you have to give up, it is about all of the wonderful things that you gain.

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8

Control Issues

Hello. My name is Julie and I have a problem with giving up control. I have a problem with being told what to do. This is nothing new. I’ve never done well with being told what I can or can not do. I prefer to be given all of the facts and then be left to make my own decision.

But then, along came Matthew. I certainly didn’t decide that he would have a metabolic condition. Our treatment options aren’t truly options. I don’t get to chose when a liver becomes available or how Matthew’s body will respond to the transplant. I don’t decide what he eats, how much he eats, or even when he eats.I don’t get to pick and chose which medications he takes or when he takes them. Virtually every aspect of Matthew’s care and a good portion of our daily lives is out of my control. I don’t like it.

Letting go and leaving things in God’s hands is an area of my life that He’s been working on for a long time. You would think that I would have learned my lesson by now!Right now,  I’m letting go because I have to, not because I want to. I’m learning to lean on Him every second of every day because I have to; because I know that I can’t make it through my day without Him. I simply don’t have the strength. I’m learning that it is better for all of these things to be out of my hands. I would drive myself off of the deep end trying to do everything myself. I wouldn’t be able to cope if something bad happened and things had been under my control. It is better to know that there isn’t anything that I can do to change any aspect of our lives right now;to know that we are walking in God’s will.

Still, I struggle every day. I need to remind myself constantly that this is how things should be, because I want so badly to be the one in charge of caring for my little boy. Instead, I’m following orders to the letter.

I am weak. Pray for me.

2

Riding the Crazy Train

So, as you have no doubt already surmised, my thoughts tend to be a little ‘out there.’ Good news! My actions follow through. I’ve been doing things without planing to and they are quite odd. For instance: I’ve started doing this insane thing where I only allow Matthews bottles in the one side of the sink. I, apparently, have a fear that they will come into contact with something that held a protein food. So, bottles go in one side, all other dishes go on the other side. I also have two different brushes for the dishes and his bottles and supplies.

And then there is the hand washing. I know what you are thinking, washing your hands isn’t crazy. Well, it is if you wash them because you just ate a handful of peanuts and want to ‘wash off the protein’ before picking up your son.

I also take his temperature every time he breaks a sweat. And I mean every time. One must be sure. The poor kid. He can’t help that he sweats all the time. He also can’t help that he was given to a crazy Mama.

Insanity, right?

Now, I have a microbiology degree that was pursued after a year of general science. I’ve taken plenty of chemistry (more than I would have ever done so willingly!) and loved, loved, loved my biochemistry class. I know that touching Matthew with ‘protein laced hands’ isn’t going to hurt him. I know that his bottles touching a dirty plate isn’t going to hurt him. I mean, I am about to wash them, for goodness sake!  But, you can’t be too careful.

See? I’m sitting right up there next to Ozzy.  All Aboard! Ha hahahahaha!

3

Social Media Woes

I think we can all agree that there are good things and bad things about social media. We can keep in contact with family, find long lost friends, keep tabs on our favorite businesses and connect with like minded people. But there is a down side too. Sometimes people share a little TOO much (ahem teenagers and wild college students). Sometimes people misunderstand what is written and are offended. Oh the joys of being blocked and “unfriended”. It’s like high school all over again, in some ways.

Anyway. I’m rambling. The point of this post is the share the pros and cons that I have stumbled upon in connecting with other parents in the Urea Cycle Disorder world. I initially sought out these groups because I needed to know that I wasn’t the only one in this boat. Intellectually I ‘knew’ this already, but I needed to hear their stories and talk with them to feel less alone. I quickly found two groups that I enjoy following. They have been a place to vent frustrations and to be supported. They are a place to ask the ‘silly’ questions. I’ve even found parents who’s children will be/have been transplanted at Georgetown. I love hearing from Mom’s and Dad’s who have already been where I am and can look back and offer useful advice. I enjoy seeing pictures of their children and hearing about how they are doing in school. Reading their posts makes me think about all of the things that I hadn’t realized that I needed to think about. Like school.. and taking meds at school and keeping his hands clean at school. Or, food. They share about foods they have found that are safe and tasty or foods that they have found that aren’t good for kids post-transplant (Who knew!?). There is a wealth of knowledge on these sites that I am all too happy to tap into.

Unfortunately, they also cause me the teeniest bit of stress. My all too flawed self compares their child to mine. “Your son had three high ammonia spikes and is just perfect and barely behind his peers! Awesome. Well how high is high? Yeah. 400 is nothing. Try 2100!” And then my moment of hope evaporates away. For all of five minutes I thought that there was another kid out there with damage as severe as Matthew’s that defied the odds and is kicking butt in school. And, you know, I guess it is possible that that child sustained damage like Matthew’s from an ammonia level in the upper 100’s. I honestly don’t know enough about the process to say for sure. But, it makes sense in my head that a higher level sustained over hours would cause more damage. So now your kid isn’t as special as my kid. He’s special. He’s got this crazy disease and he’s living this same roller coaster life, but he’s not AS special as my Matthew. And now I doubt the rosy forecast that I’ve painted for him.

And then there is the insanity of transplant. I am so excited to see other children getting a new chance at life. I am praying and crying and thanking God right along side those families.In one week I saw 4 families get “the Call”. It was exciting and terrifying; terrifying because it makes Matthew’s call that much closer. But then, crazy me has split second thoughts of “Why did they get a liver before Matthew? Is it because their child’s brain suffered less damage than Matthew’s? What makes them higher on the list?” I’ll be honest. I try not to think those things. But, I can’t. And then I get angry. Not with the doctors or the families, but with myself for being selfish. I, then, remind myself of how blessed I am to have him home; how blessed I am that he is stable for the time being, that he hasn’t had any more spikes.

This past week, I saw a little girl receive her liver and kick butt at recovery. In under two weeks (just over 1 week, I think) she was ready for discharge. But then things went wrong and her body started to reject the liver. She’s hanging on, but she needs a new liver. On the 7th, one of the parents that we’ve come into contact with lost her son. He was near Matthew’s age. So, now I’m seeing the ugly side of things… and if you’ve read more than one of my posts, you know that I tend to hop off of the bus at Crazy Town a little more frequently than is healthy. I find myself crying for those families and praying for peace and comfort, but I also find myself asking “What are we doing?!” “Is transplant really the right road?” I’m terrified of all of the things that could go wrong. They say that only 5% of transplants go through rejection. I’ve come across several parents whose child has undergone 2 transplants. It’s playing with my head a bit. Matthew doesn’t play the odds very well. (I hope to never EVER find him near a poker table.) I’m hesitant to go through something so dangerous when he’s doing fine right now. At the same time, I know that he isn’t exactly ‘fine’. I know that he can very quickly go from ‘fine’ to ‘very very bad.’ I know that God sent us on this path and we have to be faithful to continue down it. I know that I am weak and afraid; that I have to ask God daily for the strength to get through the day.. shoot, for strength to get through a morning! I’ve said before, “If God preserved us through all of this to take Matthew on the operating table (or post transplant) at a great hospital with great doctors, then there will be no doubt that it was His will and His plan” I believe this to be true. I know this to be true. But, I don’t know how I live with it. However, that is a valley that I’ll deal with if I come across it. It doesn’t help anyone to dwell on the “what if’s”.

 

 

5

Bad Days

Everyone has bad days. Even sweet little babies have them. 95% of Ruth’s first 11 months were ‘bad days.’ I’m not stranger to bad days. With Matthew, though, bad days are different. (except that they aren’t) With Matthew, my brain goes off the deep end into irrational crazy person world on his bad days. He’s a hot natured kid. Erynn was this way. He sweats a lot, especially when he cries. And on his bad days, he cries a lot. With Erynn, I would make sure that she was uncovered and in light clothing, maybe lie her on the bed under a fan. With Matthew, I immediately start to worry. Is he sweating because he’s sick? Does he have a fever? Is this a sign that his body is having trouble regulating temperature? Is his ammonia level on the rise? Then the little me on my shoulder smacks me across the face and gives me a good shake. “Get a grip woman! Everything is fine. Dr. V has reassured you over and over that things aren’t this fragile.” But that dag gum ammonia level keeps me scared. I’m like a hostage to it. Afraid to get close. It’s like the plague squared. Things may not be fragile, but I remember how fast his levels rose. And I remember how incredibly hard it was to get them under control again. And I can’t seem to forget the images of his brain. And I can’t seem to stop my brain from going to the ‘he can’t possibly survive another spike like that.’ So I’m careful. Crazy lady careful.

On bad days, Matthew’s damage is more evident and it makes it near impossible for me to look past it and see my boy. I see the over sensitivity to noise and the exaggerated startling and it scares me. Honestly, I’m not sure what I’m afraid of. Maybe it’s just that I can’t pretend like everything is okay. But, he startles and he sweats and he cries and he spits up.. and then I get really scared. It seems like too much spit. I wonder what is making him spit up. I wonder if it’s a sign of him having small seizures, if he’s disoriented for some reason, if his brain is having a little hiccup and it makes him feel motion sickness.

On bad days, I want to message Dr V every time he does anything other than smile. But I don’t. I don’t want to be that over-reacting mom (even though I am). Deep down I know nothing is wrong. That little me on my shoulder gives me a little smack every time I pick up my phone to message Dr V.  “Don’t be stupid, Julie. He’s just crying because he’s tired.”

On bad days, he cries too much for it to be normal and he doesn’t cry enough. He has too many dirty diapers and he doesn’t have enough.

On bad days, I am desperate for bed time because then my brain can come back from irrational crazy person land and I can finally relax and see my baby for the beautiful blessing that he is.

SleepingMatthew

0

Feeding Frustrations

the dinner plate

the dinner plate

I have a love-hate relationship with Matthew’s feeding tube. I love it because it ensures that he gets all of his medicine and all of the nutrients that he needs. But, I want the stupid thing to just go away! I hate the idea of feeding him because it is time to feed him. I blame the feeding tube for his chunky little cheeks. I don’t like it. Perhaps it is my own food issues that are at the base of this problem but I still find it bothersome to be forcing food down his throat. If he was nursing and wanted to eat at the volume he’s taking in now and was a chunky baby because of it, I wouldn’t have an issue.  He’s taking more and more food by bottle, but not enough, and not consistently. Is it because he isn’t ready to eat on his own. Is it because eating is exhausting and frustrating? Is it because he isn’t hungry? How am I supposed to wean him off of a feeding tube when the tube is irritating for him and makes him not want to eat? How am I supposed to get him to take a bottle when he’s being asked to eat before he’s even hungry? How do I even know if he’s hungry? I’m not sure that he’s even been allowed to wait that long. But I don’t know for sure. Maybe he is hungry and just doesn’t cry for food. Maybe he’s just lazy and knows that if he refuses to eat, food will just appear in his stomach.

And then there’s Matthew. The little stinker won’t take a bottle unless it’s from one of those nurser bottles with a preemie nipple on it. I can’t even get his full feeds into one of those. I keep trying different bottles and different nipples, but he just gets mad and then when I switch back to the other bottle he decides he’s going to teach me a lesson and won’t take that bottle either. I’d like to just wait until he’s so hungry that he takes it because he doesn’t have any other option. But then what happens at the end of the day when he still has a bottle or two left over from the prescribed amount? Do I shove that down his throat while he sleeps? Will it mess with his ammonia levels?

While I know that they won’t, I like to pretend like things will be much easier post transplant.

the future

the future

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0

Dominos

Once upon a time, many years ago a boy and a girl began dating.(okay, so it was only about 15 years ago) Their favorite way to spend time? Walking and talking. They would walk around the neighborhood. They would go for hikes. And while they walked they talked about the future. They both wanted to travel, to see all of the United States, to visit Europe and all of the amazing architecture there. They wanted adventure, to simply get away from where they had always been. Years went by and they got married and still, they wanted to travel. More years pass and they have a beautiful little girl, and still they want to travel… but not quite as much as before. Now they were seeing the value of having loved ones so close by. Not so very long later, they found out that they were expecting another child. They also found out that the company the boy worked at was closing its doors.

After a decade together, and 7 years of marriage, Rusty and Julie faced their first big trial as a family. Rusty’s job was gone. Julie’s job was going away. There was a child to care for and one on the way. They tried everything that they could do to find work. It soon became obvious that there wasn’t any way out of this situation without God’s help. Which, is about when work calls started coming in for Rusty. He opened the doors of his own architecture business and for months there was steady work. Bills were paid and their anxiety eased. Only a few months later, though, the calls started to dry up and they were once again left to wait for God to open a door. And He did. Out of no where a call came: “We have a position that needs filled now and your name came up as a possible candidate. Are you interested?” It was a contract position that promised to turn into permanent work. And so, Rusty moved to Virginia, leaving his wife with a 2 year old and a 2 month old in North Carolina to wait for their house to sell. Their home in NC hit the market after several months of prep work and had an accepted offer in under a week. The purchaser’s requested close date was within weeks of the end of the lease on Rusty’s apartment. Six months later they found themselves once again together under the same roof, in a small rental house in Virginia. And so began their search for a permanent home. They searched and searched, spending hours on Realtor.com and Zillow.com filtering through houses. They drove through neighborhood after neighborhood. Went through almost a dozen homes with their agent. Their lease on the rental was almost up and they hadn’t found a house to buy. Then one day this cute little house hit the market. It was in the neighborhood that they liked, near Rusty’s work, and was priced well below the other homes in that neighborhood. It was a short sale, which their agent had been hesitant to look at, but for some reason, this time, she was supportive. They were the first people to see the house. They walked through, not saying a word to each other. They went outside and looked around the yard. And, from opposite ends of the yard they made eye contact. Rusty turned to the agent and said, “Let’s make an offer.” The offer was accepted and the sellers requested a very quick close date, an unusual situation for a short sale. They purchased a cute little house and moved in just weeks before the lease was up on their rental. They were happy. Things were looking good. They missed their family, but they were on that long awaited adventure and they were going to make the best of it.

Just a few short months after purchasing their home, they found out two things. They were expecting another child and Rusty’s contract was not going to be renewed. Anxiety set in. This job wasn’t the permanent financial stability that they had expected. The bills in their city of choice were much larger than anticipated and there wasn’t a job out there to apply for. Until there was. Just a few weeks before the end of his contract another offer came. It was another contract, but again, it promised to be long term and to offer stability. It wasn’t. In fact, it turned out to be less financially stabilizing than the previous contract. Over the next few months, they struggled to stay above water, a task that was made more difficult by the mysterious illness their dog contracted and eventually died from. Less money coming in and more bills arriving and again the end of a contract in site, and the arrival of a third baby made for another few anxious months.

The baby arrived, looking perfect as can be. But, just hours before he was to go home to his family, it was discovered that he was dangerously ill. Again this boy and girl found themselves feeling like they were in the middle of the ocean in a tiny little boat with no compass. There was nothing for them to do. They found themselves with their newest baby, their precious boy, in ICU at the local children’s hospital. As they walked into the hospital to meet with some doctors that first day, they looked at each other and said “I hate this town. We’ve had nothing but trouble since we moved here!” They met with the doctors and left. While waiting at the crosswalk, though, something became clear to them. If Rusty’s boss hadn’t closed up shop and moved to Virginia, he wouldn’t have been in that meeting to say “I know a guy who would be perfect for that job”. If their house hadn’t hit the market when it did, and sold when it did, if their new home hadn’t been available for purchase when it was, then they wouldn’t have found themselves in a house just minutes from the best children’s hospital in the area, making it easy to visit their little boy twice a day during his 34 days in the hospital. He wouldn’t have had the doctors that he did; doctors that happened to be familiar with his condition, doctors that happened to be close to the specialists in DC. In all likelihood, if they had given up or not endured all of the ‘bad’ things, if they hadn’t been diligent to pray and be faithful and patient, to wait for God’s direction,  their son’s condition would not have been recognized and he would have died.

Recognizing the dominos that got them to where they are makes all of those bad things, not quite so bad.

PS. The second contract did end, but a new job, one that is actually permanent, appeared out of no where (another one of those, ‘I think you should apply for this unlisted job’ situations) and Rusty was accepted for the position with only a week of being unemployed passing between the end of his contract and the start of his new job.