Stones in a Field

I have multiple hospital numbers memorized. It feels like every other day I get a call from one of Dru's 8 different doctors with new confusing information, or abnormal test results. You would think I would get used to it. But still every time I answer the phone or open a letter, my stomach drops, my face gets flushed, and I feel like my ears are underwater and I can barely hear anything but my heart thumping. I could have never anticipated how absolutely exhausting it is to care so much about someone. There are days that it makes me physically ache just to look into his sweet, innocent eyes and wonder if he will be ok, or what his life will be. I read this quote a few weeks before Dru was born, but I didn't understand it the way that I now do.

 Do we have to be humans forever? Consciousness is exhausted. Back now to inorganic matter. This is what we want. We want to be stones in a field. -- Don DeLillo

Being a stone in a field seems so beautifully peaceful to me sometimes. Stones don't have to think, or feel. It truly feels exhausting to just be conscious. It has been a rough couple of days. It is hard to have your son be described as having "abnormal" results over and over again. There is something that feels so offensive about that word. Instead of letting my mind run wild, tonight feels like a good night to reflect on what I have learned from being a mother, and specifically what I have learned from Dru's metabolic disease.

1. I have learned what having faith really means.
No one seems to know any hard facts about Dru's condition. It is extremely rare, thus any research is completely lacking. Leaving one doctors office we will feel optimistic, while leaving another's office we will feel completely discouraged. While Dru was in the NICU, during every prayer I said I had the district impression that I needed to "just have faith". It became frustrating and confusing. I felt as though I was being faithful. The problem was I didn't understand what having faith actually meant. "Faith" to me meant I believed that the Lord had the power fix my situation. Leaving the NICU one night after receiving more bad news about Dru's disease, but no real answers about what could be done for him, my heart physically ached. Once again I felt the Holy Ghost whisper to me, "just have faith". Frankly, I was annoyed. I thought about faithful families that I knew that had suffered great loss or tragedy. They exercised faith, but their children still had not recovered, or passed away.

As weeks have passed I have reflected on my naive view of faith. I have come to recognize that having faith in Heavenly Father and Jesus Christ does not mean that you believe that everything will "work out", or even that the Lord will save your from your trials. Having faith is believing that Heavenly Father has a plan for my life and for Dru's life. That plan was not just sloppily thrown together late one night, but rather it has existed since before the world began. Heavenly Father specifically and meticulously designed each day that we have lived and each trial we have and will face. Having faith is believing that although my circumstances feel chaotic and heartbreaking, this is exactly what my Father in Heaven has had planned for me all along. Let me go one step further. Heavenly Father knows everything about me from why I don't like how candy makes my teeth feel, to the temptations that I wrestle with daily. He created me, He knows every single part of me. Therefore, he knows exactly how I need to be both challenged and nurtured to grow.

Every cell in Dru's body was divinely designed. In Heavenly Father's eyes he is not "abnormal", nor is his body deficient or making errors in metabolism. Rather, Dru is exactly as the Lord intended him to be. He does not make mistakes. When I am having a hard day I close my eyes, bow my head and feel my chest burn inside me as the Holy Ghost helps me remember that everything is going exactly according to plan. Although it can feel utterly disconcerting, He is in control and He always has been. Dru was meant to be mine all along, and I was meant to be his. I have faith in the Lord and Savior Jesus Christ.

2. I have learned that comparison is the antithesis of happiness.
Probably the biggest hinderance to my happiness is comparison. I feel bitter for what we have and are going through only when I think of what it would be like if we had the chance to have a "normal" baby birth, delivery, and genetic code. To think of what it would be like to not have to wake my sleeping baby multiple times a night to force-feed him seems like such a luxury. What if we had never received Dru's diagnosis, and I wasn't constantly on the lookout for signs of his body going into metabolic crisis? How incredible would it be to see a shaking limb and have my first thought be that he was just shivering, instead of panicking that he could be having a seizure. But this is our new normal. Do I really want to be a person who can't be happy for other people's successes? What a terrible and ungrateful way to live. I would never trade even one day with my Dru to have a "normal" baby. So much good and even more growth has come from this trial. I am grateful that because of Dru's disease I mindfully soak up every sweet moment with him. It is an absolute blessing to never ever get frustrated with him, no matter how tired I get. It is a blessing that I don't think I would have if I did not have his disease to remind me how precious everyday with him is. I have learned that I am the happiest when I see Heavenly Father's hand in all aspects of my life.

We had to take Dru on an airplane when he was only 3 weeks old and only 6 pounds. It is so important that he does not get sick, or he has to be hospitalized. An airplane is an absolute nightmare for germs. I was panicked. I remember my hands shaking as we walked through security. It felt like the world was intent on destroying my tiny baby and I had no way of defending him. As we boarded the plane and took our seats, I closed my eyes and begged Heavenly Father for comfort and protection. With my eyes still closed, I felt my chest burn and I saw a physical barrier drape over our family. There is no doubt in my mind that Heavenly Father was with us on that airplane personally protecting our little Dru. I felt Him there. What an indescribable experience to feel so close and so important to God. Without the challenges we have faced, I would have never had incredible experiences like this one. I would not have had the opportunity to come to know my Savior in such a personal way.
For that, there is no comparison.

3. I have learned that my trails are perfectly tailored to me
What I have felt so strongly, is that Heavenly Father has perfectly tailored this trial for me. I can see how specific aspects of this trial correlate with my greatest weaknesses. I am admittedly not very good at relying on the Lord. I seem to more often say, "Thy will be done… BUT just so you know I have some really good ideas!" This trial is unique because there is literally nothing that I can do to fix it or figure it out. There is little research, little consensus of treatment and very little peace of mind for a worried mother. So I can either choose to walk blind and alone, or choose to walk blind while clinging to and trusting the Savior as he walks beside me.

This trial has taught me to live in the moment and to find "joy in the journey." Right now is perfect. We all have each other and that really is all that we need to be happy. Right now Dru is doing great. He has had no symptoms of his disease and he is growing and getting even cuter everyday. That is absolutely something to be happy about.

I think I will go get Dru out of his crib now so I can snuggle him.