Elephants

This past year has been extremely stressful and trying. At times my faith in God and divine decree has wavered. This is not the first time in my life that I've questioned my faith, but as I look back on all of those instances, I am grateful for the events that have caused me great pain. In Lochlan's case, I doubt that anything good could come of his suffering. There have been times along this journey when I have prayed that I would rather let him go to God than have him with me and let him suffer. My guilt about putting him through multiple surgeries, testing, and the everyday discomforts of renal disease runs deep. Ultimately our hope is that one day he looks up at the clouds in the sky and feels happy that he is alive. Maybe then it will all be worth it.

It is an everyday struggle to stop myself from focusing on the pain. I have always thought that living in the moment is best, but lately I've realized that I cannot dwell on the moment. I must look towards the future, and reach for the life vests handed to me. Sunday was an ordinary day, but for some reason I couldn't shake the sadness and took multiple trips to the employee bathroom to cry. Later in the afternoon one of my coworkers came over just to say hi and when she realized I was having a sad day, she hugged me, and that is all that it took to pull me out. Along the way, in our most miserable times, our friends, coworkers, family members, and kind strangers have reached out to us at the exact moment before we fell off of the figurative cliff.

More than any other medical problem that Lochlan has, his struggle to eat and gain weight has been the hardest on me. I feel strongly about healthy food, so feeding him through a tube feels inhuman and lacks the soothing and bonding experience of bottle or breast feeding. In addition to my ambivalence about tube feeding, after seeing a bill go to our insurance for $8000 to rent the kangaroo pump and supplies, I was at a breaking point this week. Last October, my coworkers my raised enough money to cover our deductible this year. We were so relieved to stop worrying about medical bills and started focusing on getting Lochlan the best care. However, it seemed like a brief honeymoon when the funds would be depleted in one fell swoop.

Along came a ray of light on Tuesday. An extraordinary woman named Erin Musto had reached out to our family before the Holidays. Her foundation Maddie's Mark provides "best days ever" to critically ill kids. After losing her daughter to an inoperable brain tumor two years ago, she began helping other families to keep Maddie's spirit alive. Four kind women showed up on Tuesday and created a bright and cheerful nursery that Lochlan can grow up in. For me it is more than just a magazine worthy room. It is a place that I can go and imagine a brighter future for him when I am feeling afraid and doubtful. I can see us reading stories in the glider and I can see him standing in his crib saying Mommy when he wakes up.

Tuesday night, my coworkers organized a fundraiser at the Saratoga Paint and Sip. It felt so good to get out with my friends. Saratoga Paint and Sip is an incredible local business that opened their doors to us to help raise money for Lochlan. I am so grateful for the financial help, but I was most grateful for a night out that allowed me to feel like a normal Mom getting out of the house to have a good time. Then, yesterday, Life Maid Simple came to my house and cleaned it from top to bottom. Erin contacted them when she heard about our family. Life Maid Simple fundraises to provide families with clean homes free of charge when they are struggling with medical problems. Needless to say, I felt like a new woman when I arrived home from work last night.

When Erin was here, she brought an elephant for each boy. I asked her what the elephants symbolized. She said that when Maddie was diagnosed, her famaily was surrounded by people that wanted to help. When she created her charity, they began making and selling elephants to raise money because the elephant herd will surround a sick elephant. I absolutely love that symbolization. As people continue to surround us (like the elephants) I am starting to believe that everything will be ok.