Pure Love

When anyone asks me about Lanie, one of the first things I tell them is that she is pure love. After Lanie got sick, the doctors could only make guesses about her future. Most of those guesses were about the things she would not be able to do. At the time, it was very frustrating. Being new to the special needs arena, we didn’t yet know how to navigate everything, and all we wanted were some straight forward answers. What we didn’t understand at the time, is the doctors really had no answers.  All kids with neurological issues develop differently since the brain has ways of remapping.

A couple weeks into our initial hospital stay at Childrens, Lanie had a MRI. We had already been pre-warned that there was a good chance she had brain damage, but we were still hopeful that it was not as bad as predicted. The morning after Lanie’s MRI, her hospital room door was slightly cracked, and we were nervously waiting for the doctors to make their rounds with the results. When they got to our room, they pulled the door closed, but they were still on the outside of our room. This was something they had never done before, and it was at that point, before they ever entered our room, we knew the results weren’t what we wanted.  When the doctors finally came in, our fears were confirmed… they had stopped outside to discuss the best way to deliver the bad news. It was a female doctor who could not have been much older than us that was designated the task of explaining the results. She was dark headed and slim and had great taste in shoes. In that moment, I actually felt sorry for her. She had to give two new parents some of the worst news of their lives. I imagine that was not her main drive for going to medical school; this was the hard part of her job. She did her best to walk us through the results.  But when she was done, we had more questions than she dared attempt to answer.  How much damage? What was damaged? What do those areas of the brain control? What does that ultimately mean for Lanie? How delayed will she be?  Will she walk? Will she talk?

In an attempt to get us answers she brought in the neurology team, and that’s when we met Dr. Ness. A day or two later Dr. Ness and her team explained what was damaged, and she gave examples of what she had seen in other people when that particular area of the brain had been affected. But she had no real answers about Lanie either. Lanie’s damage was wide spread and no one could really tell how all that would manifest. “She will tell us in time,” Dr. Ness said.  She also told us that Lanie looked better on examination than she thought Lanie would given her MRI results and that over time Lanie would do more. We held on tight to those few statements, as it gave us hope for progress. Dr. Ness didn’t know if Lanie would walk or if Lanie would talk. She didn’t know if Lanie would ever eat like normal or ever be able to hold her own head up. Her advice was to figure out a way to get Lanie in RISE and take her home and love her. So that’s exactly what we did. And early on, on the really hard days, I would remind myself that we just have to love her, that’s what her doctor prescribed.

Fast forward three years later, and the one thing we didn’t think to ask any doctor about (will she be able to love) is the one thing I love about Lanie the most… she is pure love. The word pure is defined as free of any contamination. There is not a word that describes Lanie’s soul any better. Her entire life is one difficult day after another. But she doesn’t let that contaminate her. She is always happy and all smiles these days. She seems to have this positive outlook on life that radiates to everyone she is around. I’ve honestly never seen anything like it, and people attract to her because of it.

Love is defined as an intense feeling of deep affection. I’ve never encountered a person easier to love or more loving to others than Lanie. Her ability to love (unrestricted) is uncanny. It is like she always sees the good, no matter the situation, no matter the bad. And the way you feel because you know you are loved by her and make a difference in her life is a feeling that is indescribable.

The list of things Lanie can’t do is endless. It’s a lot longer than we had originally hoped for in that hospital room during those early days of trying to figure out how to navigate things. That sounds harsh, but it is the truth. I think family and friends struggle with how to treat Lanie as they don’t want to make her feel different or make us think they treat her differently than other children. But the reality is that she is different and that's okay. It is okay to treat her different as she has different needs and processes things in ways others don’t.  But what was so unexpected about Lanie to us is her ability love and spread love. It is number ONE on her list of things she can do, and it is unmatched to anyone I’ve ever seen. Pure love is rare, but then again that fits for Lanie because she is also rare. I pray that she never losses this ability more than I pray that she will gain new abilities. The world doesn’t necessarily need more people that can walk or people that can talk. But it sure could use more pure love.