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Gardening

Everyone has a place where God meets them. For me, that’s in the garden. I always feel closest to God when I’m working in my yard. It is there that I can let the things of this world leave my head and I can focus on the beautiful world that He has given us and actually hear what He has to say to me.

This weekend, Rusty and I spent the entire weekend ‘playing in our yard.’ We had no appointments to keep. No where to rush off to. No one to go see. It was just us and our children, with our fingers in the dirt, all weekend long. It was exactly what my tired soul needed. I feel rested. I feel happy. I feel like we got to be a ‘normal family’ for the first time in a long time.

Tonight, as I sit down to some quiet time on the couch with Rusty, I am thanking God for the perfect weather and temperatures we had this weekend. For the weeds that needed to be pulled. For the opportunity to add a little curb appeal to our little home. But, I am most thankful for my husband. A man who God uses to quiet my soul, to help me refocus. I am thankful that we both enjoy getting dirt under our fingernails and using that time to talk about ‘dumb stuff’ and to laugh.. a lot.. about absolutely nothing. It is often through him that God reaches me. For that, ‘thankful’ doesn’t seem like enough. I’m not sure that I can thank God enough for him. Rusty truly is my “help mate”.

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Sometimes, Part 2

Dear Matthew,

Sometimes, Often times, Almost every time, while I’m rocking you, I look down into your peaceful, happy, sleeping face and I say “I’m Sorry”. I’m sorry that this happened to you. I’m sorry that the ‘problem’ is from the chromosome that you got from me. I know it isn’t my fault. I couldn’t have known. It is most likely a random mutation. But you got that mutation from my chromosome and I’m sorry. I’m sorry that I can’t fix it. I’m sorry that sometimes when you cry, I don’t know if you are hurt or sad or hungry. I’m sorry that I don’t know how to comfort you. I’m sorry that your life isn’t going to be easy. I’m sorry that there are going to be people, ignorant people, who don’t love you because you are different; because they don’t understand; because they don’t know how to get to know you. I’m sorry that your life options are a toss up of two not so fun things. I know that life for you after transplant won’t be a cake walk. I know that there are a lot of dangers ahead of us. But I think that taking on those dangers are much safer than the dangers that face you now.

Sometimes, Often times, Every time, that I look at you, I pray for you. I pray for me. I pray that God will grant us one more miracle. That despite the damage to your brain, that you will show no manifestations of it as you grow up. I pray that God will help my unbelief. Because I pray for something that the logical side of me, the scientist in me, wants to argue as impossible. But, my sweet little boy, your being home with me right now, smiling at me as I type, once seemed impossible. We serve an amazing God who preserved you through an avalanche of medical problems. When I pray, I thank God, with flowing tears, that He saw fit to answer my prayer “Please don’t take my baby from me.”  I thank Him for the moment that we are in. I thank him that you came home. That your sisters have gotten to see you, to hold you, to love you and spoil you and dote over you. I thank Him that they are your little body guards. That they don’t see anything wrong when they look at you. That you are perfect to them too. I thank God for the doctors and nurses who fought for you, who continue to fight for you.

I pray for patience and peace because I am tired and confused. You are exhausting. The feedings. The diaper changes. The wanting to be held constantly. The not liking certain positions because your feeding tube irritates you. Not being able to just lie you on the bed and walk away because I’m afraid to let you cry. Afraid that it will mess with your ammonia levels. Afraid that it will make you throw up. Your needs, that I want nothing more than to meet to your highest level of satisfaction, always seem to overlap with the needs of your sisters. How do I hold you while you eat in one room and reading stories to your sisters before putting them down for naps in the other room? When, exactly, am I supposed to give you a bath? I want to trust God that this is all for a reason. I want to trust God that this is all for my good, for your good, for the good of someone out there. And I do. But sometimes. Sometimes I have to ask why. Sometimes I question where the good is. When will we see the fruit of this? Will we ever? And you know what, my sweet boy, we may not. And that is okay. Because when all the fears and anxiety get to me, I know that you and I can sit in the rocking chair and read the Bible together and God will comfort me. He tells me over and over that we are His children and He has us in His hands. We have nothing to worry about and nothing to question. God has a plan. A perfect plan.

And I wonder. I wonder if you will grow up to have the personality that I imagined you would have when you were in my belly. I wonder if you will grow up. I wonder if there is a girl out there who is going to love you for who you are. I wonder if you will walk or talk. I wonder if you will see the beautiful world around you. I wonder if you are going to be angry and frustrated, unable to articulate your thoughts or control your movements. I wonder what you will think when you look back at the path you’ve had to walk. Will you be thankful? Will you be angry with us? Will you question God? I pray that you grow up firm in your love and trust of God.

I hope that in the end, you know that we are all imperfect people. Mommy and Daddy did the best that they could. We did what we thought God wanted us to do. We continue to do what we think God wants us to do. That is all that we can do. That is all that you can do. Remember, God has already won the war, you just have to show up for the battle and sit back to watch him fight for you. You are His son. He will always fight for you.

Love,

Mommy

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Sometimes

Sometimes when I look at Matthew I see perfection. I see the beautiful little boy that he is. I see a future without bounds. I see him without any defects. I see him whole.

Sometimes when I look at Matthew I hear the voices of his doctors. I hear them telling me all of the things that he will never be. All of the things that he will never do. I hear “we usually only like to treat these cases when there is hope of preserving brain function.” I hear “his age gives us false hope for his future.” I hear them asking me if I’m ready to give up on him yet. And while those statements are in the past, they are still a part of his future. And so, they echo over and over again in my head.

Sometimes when I look at Matthew I see his MRI scans. I see the swirling, cloudy mess that is a good portion of his brain. I see what it should look like knowing what that it is not.

Sometimes I look at him and wonder “What if?” What if I had called the nurse and insisted on seeing a doctor when he first threw up at 30 hours old. What if we hadn’t transferred him out of the PICU so soon. What if it hadn’t taken so long to get him back on dialysis? Would things be different? Would his brain have been preserved?

Sometimes when I look at Matthew I see his unseeing eyes. And sometimes when I look at him I see him looking right at me. I see him smiling back at me. Honestly, I’m not sure which one of those is true. Maybe he only sees me part of the time. Maybe I imagine him looking at me. Maybe. Maybe he’s just slowly catching up to where he should be. Maybe.

Sometimes when I look at Matthew all I can do is cry. Sometimes I don’t even know what the tears are for. Sometimes those tears are for what should have been and what will never be. Sometimes those tears are from guilt. Sometimes from pain. Sometimes because I wish so badly that my baby boy didn’t have to endure what he’s going through. Sometimes the tears flow when I see his scars and picture him back in that hospital, completely unrecognizable, surrounded by machines. Sometimes I mourn the loss of the way I had seen things going. But, sometimes, those tears are grateful tears, thankful tears, tears of rejoicing. Tears that express the feeling that can’t be put into words of having him home, of getting another moment to care for him.

Sometimes when I look at Matthew I wonder what God’s plan is for him. How is this little boy going to have a big impact? Because I know that he will. Somehow. For someone. Someday.

Always when I look at him I am overcome with love.

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Is the grass really greener?

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From one Monday to the next, I have twice found myself in the hospital waiting for an ammonia level to come back from the lab. Twice in seven days I have sat there and prayed: Everything is going to be fine. I’ve been more than particular about making sure Matthew gets his medicine on time and his feedings on time. I take  meticulous notes. I have a mini-lab set up to ensure the highest level of accuracy when divvying out his medications and his formulas. These checks are just us being cautious. He isn’t exactly showing any other signs of elevated ammonia except for this one thing …

Both times Matthew’s ammonia levels have been exactly where we left them at discharge from the hospital. But that doesn’t mean that I don’t spend that waiting time thinking, If only he could have his liver transplant NOW then I wouldn’t have to sit here and worry. Then we wouldn’t be rushing to the ER every time he throws up. Then I wouldn’t have to wonder if his breathing fast is normal baby breathing fast or high ammonia level breathing fast. Things would be so much easier if he just had a new liver!

However, in this last week, I’ve had a chance to connect with other moms who’s babies are waiting for a new liver or who’s babies have gone through liver transplant and now I know the whole new list of things that I’ll be worrying about. The whole new list of things that will have me sitting in an ER clutching my baby and praying that everything will be alright because I did exactly what I was supposed to do. He wasn’t around any sick kids. I sprayed everything with Lysol. He’s had all of his medications on time. I’ve done everything right. This is just us being cautious.

A new liver is going to save Matthew from having any more ammonia level spikes. It will preserve his brain from undergoing any more trauma from elevated ammonia. It will give him a chance to live a long life. To eat more freely. But, a transplant truly is trading one disease for another. It wasn’t until connecting with other mothers that I began to understand that. Sure I’d been told it before by our transplant team, but I didn’t truly understand what that entailed. Last night, as I sat in an ER room, rocking Matthew in a rocking chair that desperately needed replacing for 3 hours, I had plenty of time to think about what the future holds for us post-transplant. The grass may not be greener, but it’s definitely a shade that’s more flattering on Matthew.

Julie

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