The Bravest Little Souls

One of the silver linings to this journey has been some of the beautiful souls I have had the privilege of meeting. At the very top of that list is our little fighting friend, Basil's parents. We haven't seen much of each other, but I feel like we can relate to one another on a level that most people can't even begin to understand. And to be perfectly honest, that sucks. I wish I didn't know them, and I am sure they wish they didn't know us. That would inevitably mean that our precious babies weren't suffering. But, here we are. 

At the Zoo!

Laura, Basil's mom, advised me to look this short story up after I posted my last blog entry. Holy cow, if ever there was a more poignant piece of writing to describe our babies and the cross that they each bear for this world. Our babies suffer. We suffer. They teach us to be brave and to keep our faith in Him. They teach us to lean on love and support. They remind us that we are not alone. Not ever. They teach us to stay strong in our faith and in this fight. They smile through the pain and create new hope with every milestone they reach. 

Thank you, Laura, for blazing this trail for the moms of future fighters. For every ounce of suffering my Nora has seen, your Basil has seen more. For every night we have spent sleeping on a pull-out(ish) couch in the hospital with Nora, you and your husband have spent 10 with Basil. For every side effect of treatment our girl has endured, Basil has bravely fought through more. I physically ache for what you have been through, and I pray that you can, in turn, literally feel how much I admire you and the miles you have walked in those 9th floor hallways. Our family will absolutely always be here for you. We will pray for Basil every night of our lives. Stay strong in this fight, for Basil is especially brave.

 

The Bravest Little Soul

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you”. God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

 

Sleepy Heads

Every baby is a literal miracle. A breathing, crying, growing, loving, fighting, amazing miracle. I have been given 2 beautiful and perfect gifts that I cherish with all of my being. I wish, just as every mother wishes, that neither of my miracles has to suffer. Everyday I wish I could take this fight for myself. But that wasn't His plan...and maybe Nora had something to do with that.

Nora's MIBG, CT scan and bone marrow biopsy are scheduled for Friday, September 23rd. Please keep us in your prayers for clear scans and NO EVIDENCE OF DISEASE in her bone marrow. Once the scans and bone marrow results are read (and CLEAR!), the tumor review board will make a decision on surgery to remove any remaining tumor in her abdomen. While I am not looking forward in any way to surgery, with her elevated protein levels in her urine, it might be the best action for the future. We always appreciate any prayers you can spare for great results and educated, thoughtful decisions by Nora's team at Children's. Thank you warriors. We wouldn't be here without you.

Best Friends