The Shack

If I am honest with myself, I can admit that there are many things that I would change about my past if I could. The age old, "If I only knew then what I know now..." comes to mind because I think we, as humans, all tend to carry some regrets. They sometimes weigh us down. But I have also allowed myself to believe that some of the things that I would change if I could are the exact things that have made me who I am today. Out of regret comes knowledge. And if you are smart, you take that knowledge and use it to better yourself and those around you. If I was to say that I have taken my own advice for every regret I have, I would be lying. But the many regrets that I have chosen to use for good have made me better. A better mother. A better wife. A better daughter. A better friend and sister and acquaintance. Just a better person. I know that my past is what brought me here today.

I cannot describe myself as an avid church-goer. Many Sundays have passed in which a seat sat empty where I could have sat to worship. But I will not say that just because I do not worship in a church I am any less of a servant of God than those who gather under one roof. I am a sinner and I am weak in His presence, and I have a long journey to become the servant that I want to be, but I am trying. The journey that has led me to the Lord started when I was a little girl, attending the Catholic church with my parents every Sunday. I have lost my way many times as I have grown into womanhood, but I somehow manage to find my way back.

I remember when my husband and I, dating at the time, started attending church with his mother on Sundays here and there. The pastor is one of those who grabs your attention with his speaking voice, not because it is loud, but because it has an air of importance. You feel like you are commanded to listen, and the sermons flow from him with such grace and passion that they wrap themselves around you. I was amazed at how touched I was by his sermons, never having experienced such a grip in the name of the Lord. I guess maybe that was a turning point in my life, listening to his words. I always felt like the sermons were written just for me. They moved me in ways I had never been moved before, and I think it was then that I truly realized the Lord's grace. I am sad to say that I have not attended that church in a very long time, too afraid to expose Coulby to all of the germs in the church nursery, but I also know that I have to face my fears and let God do the rest. I know I must hand my fears over to Him. That is one of the things I am working on.

Then my husband and I were engaged and the same pastor mentioned above was to marry us. He required that we do pre-marital counseling prior to the wedding, to which I was agreeable, but had no idea what it would entail and how much I would take what I learned and apply it to my marriage. Looking back, I really think the counseling was one of the key pillars in what my marriage to my husband is today. We are solid, devoted, loving and faithful, with the Lord being the third party in our relationship. There was a biblical verse that our pastor asked us each to read and interpret, and I remember my naive and ignorant interpretation. The gist was that a woman should serve her husband. I, feeling very strongly about equality of the sexes, responded by saying that I felt like this was an unfair burden for a wife to be subservient to a husband. Shouldn't each person in a marriage get equal satisfaction? If the pastor could have, I am sure he would have clunked me upside the head (as in the V8 commercials) to wake me up! Instead, he listened to me without judgement, then listened to my husband, and only then proceeded to educate us. These two naive, dare I say dumb, young lovebirds needed the guidance that the pastor then offered: Marriage is not about subservience or dominance, but rather getting your satisfaction from satisfying your spouse. That was the light bulb moment for me (aha!) in which I got it. It explained everything...not just marriage, but a relationship with the Lord, and with any others in my life.

Now I have said it many times before, but I must profess again that I truly believe that my two babies are true miracles of God. All babies are. Having said this, I can also say that having Coulby could have shattered any relationship that I had with God. When he was diagnosed with Citrullinemia at 4 days old, I wept and let myself stray away from the Lord to ask, "Why him? Why me?," only to return to him in the same breath and pray that He wrap his arms around Coulby and heal his tiny broken body. In all honesty, "why" has been the hardest thing to keep at bay since Coulby's birth, because some times were so hard and I felt such despair that I could not focus enough to see all of the blessings we have been given. And I do count my blessings. Every day. I know what could be with Coulby, and how fortunate we are. And I praise the Lord, for he has wrapped Coulby in his embrace and breathed His life into him. Coulby might always live with Citrullinemia, and there will be many moments when it will seem unfair for him to have to suffer, but I have learned that those are the moments when I need to turn to God the most. I hope I can instill that in my children as they grow.

Now I am finally at the whole point of this post. I am an avid reader, and usually read books that are passed on to me by friends and family. My mother-in-law recently brought me a book and I added it to my stack of "to be read" books. I was in the middle of a book at the time, and when I was ready to read the next one, the cover of the book my mother-in-law had brought me caught my eye. It was not next in line, but it sparked my interest, and I began reading it: The Shack by Wm. Paul Young. This book has touched me in ways that I cannot even describe. It is almost as if I could follow the story like it was my own personal journey to the presence of God in my life. It opened doors that I did not even realized I had closed. A true must-read for anyone questioning their faith or longing for a better relationship with God or struggling with any aspects of life. A must-read for everyone! Best stated by author David Gregory's review: "An exceptional piece of writing that ushers you directly into the heart and nature of God in the midst of agonizing human suffering. This amazing story will challenge you to consider the person and the plan of God in more expansive terms than you may have ever dreamed."

If you enjoy reading, or even if you do not, pick up this book! You will not want to put it down! It is written so well, intertwining the story of a man struggling with his faith after he suffers a tragic loss when his young daughter is abducted and feared murdered, with the divine existence of God, even in our dark world. Reading this book is an experience in and of itself!

A 1-month-old Coulby

"Trust in the Lord with all your heart, lean not onto your own understanding but in all your ways acknowledge Him and He will direct your path."
~Proverb 3:5-7

*This verse helped me through some dark times. I hope it might help others, too! Sorry about the image quality...it is an old photo that I scanned in to the computer!

The Citru-C's

There have been many days that have challenged my faith, my spirit, my determination, and my patience. That first year of living with Citrullinemia was as much a learning experience as it was a personal journey. I almost grieved the loss of having a "normal" experience upon bringing my newborn home. My first born. My beautiful baby boy. And as difficult as Coulby's diagnosis was for me, it was even harder for him. Becoming a human pin cushion. Having to drink so many ounces of formula each and every day, sometimes having it pushed on him when his little belly was full. And the meds! My husband and I have tasted them and...well, let me say that my eyes watered and I nearly lost my lunch!



We began calling the nurses by name because Coulby was in and out of the hospital for various reasons (illness, dietary and medication adjustments). They were always happy to see him, and we were never too happy to see them. Not because we did not like them, but because Hopkins became synonymous with blood draws and hyperammonemia. Every time Coulby was hospitalized, it was not only scary, but emotionally and physically exhausting. I would look out of the window, permanently sealed shut, and watch the people walk the streets of Baltimore going about their daily morning, afternoon and evening routines, oblivious to the world on the other side of the window. I was helpless, often angry, and depressed. I never knew what each day would bring: Would Coulby have a good appetite today? Will today be the day he needs to be hospitalized? Should I risk exposure to public germs just to preserve my sanity?



Although I cannot pinpoint the exact hour on the exact day, I know that something hit me that seemed to take some of the weight off of my shoulders and help me to breath again: My son is a fighter. A survivor. And I am surviving. Step by step. Day by day. And now, year by year.



To say that this journey never challenges me anymore would be a lie. But I have learned to live with it, and to seek the guidance from God that I need to take care of Coulby. I only wish that there had been someone out there, someone who knew exactly what I was going through and had been there too; who could have held my hand through that first year. Just to guide me. Reassure me. Educate me. And provide some hope when I thought all was lost.



Now I am getting the chance to be that person that I always longed for. In May 2008, Coulby's nutritionist told me that there was another baby boy born in the state of Maryland and diagnosed with partial Citrullinemia. Really??? She asked if I would be willing to meet them some day in the future, when everyone was ready. I said yes. What else would I have said? The opportunity came sooner than I expected.

Coulby was scheduled for a routine appointment at Hopkins. It was the same day that the above referenced baby was to be discharged. Almost like a meeting of fate. God knowing it was something I needed just as much as the baby's family needed.

Corrigan. I snuck a peek at him as we walked into the all-too-familiar hospital room. Hooked up to an IV, cords coming from every which way, almost like tentacles, I saw my son in Corrigan. His parents and big brother stood to meet us. Mindy, Mark and Connor. And I smiled and said "hello," but what I felt like doing was crying. Because I saw myself standing in their spot just four years prior. Because I remembered the feelings of uncertainty, fear, and pure despair. Geez, what would they think if I just broke down and started crying? I would terrify them! So I sucked it up and we got to talking. The conversation came easily. General "getting-to-know-you" talk, and of course, Citrullinemia talk. Questions. Answers. I really wanted to help this family, who so reminded me of my own. We exchanged information and said goodbye, vowing to be in touch. This was a great opportunity for me to be able to share some of my Citrullinemia experiences, and hopefully prevent some of the heartache and despair I had felt when I thought there was no one to talk to.

In the months since, Mindy and I have found common ground because our sons share the same disorder, and because we seem to be kindred spirits. We have common interests, and often seem to live parallel lives. She has been a friend outside of our Citrullinemia lives. The friend that I have needed, even if I did not know it.

You know how people say, "Things happen for a reason," or "God has a plan for everyone?" They are right. Even when it seems like the world is closing in on you. Keep the faith!