As a parent, we have a primal instinct to protect. The second our child is born, our role is to frankly, keep them alive. Our babies depend on us, 100%, for at least the first several years of their lives. In the jungle, a lioness will go to any length to protect her cubs. She even hides her cubs for the first 2 months of their lives. Often times the lioness will be killed during a pride takeover protecting her cub from attacking males. I believe, as a parent, we are wired to always protect and worry about our kids, no matter what age they are. Typically, we raise our children and they become more independent. We are to instill good values, manners, sense of humor, et cetera. They, in a sense, are to one day leave our pride and the circle of life continues.
With Livia, and any child with Sanfilippo or other rare and devastating genetic conditions; our role as parents for their entire lives is that of protection and well being. Livia is completely non verbal. She still has cues that Jake and I can pick up on, but no words. We have been extremely fortunate in our situation. I have the blessing of being a stay at home mom. Jake is a completely involved and hands on father. We have grandparents and aunts and uncles and friends and other family members that would go to any length to help us out. People who would drop anything to be here in a time of need. This is a HUGE sense of peace for us to know how loved we are. Especially Liv. If you are on social media, or watch the news, you may have recently seen this clip about a young boy with sever autism who was being abused by a therapist and the abuse was caught on a nanny-cam. The article and news clip can be viewed HERE, if you have any interest in viewing this atrocity. A situation like this is any parents worst nightmare. I can not even imagine what his parents must have thought or felt. It makes me nauseous and sad to even think about it. We have been very lucky in that Livia’s care has never been compromised. Until recently. I will not go into a lot of details, and by no means did anything like this video happen to her. I don’t feel the need to tell the entire world exactly what happened because we are moving on and the situation is being dealt with. My point of this post is to shed a little light on how sever Livia’s needs are and how it feels when trust is compromised. It’s also about forgiveness and moving forward. I’ll admit, forgiveness and moving forward isn’t an easy thing to do when the inner lioness wants to come out and as Katy Perry would say “ROAR, ROAR, ROAAAAARRRRRR!” (If you don’t know or understand that reference, click on her name!) Moving on, when the situation occurred with Livia, it was one of those moments that I wanted to turn really ugly, chew someone up, and spit them out. Imagine your whole body catching on fire, you’re sure everyone can see your heart beating through your shirt, hands are shaking kind of madness. That is what I experienced. Her safety and well being was put in jeopardy. It was a first, and hopefully a last. Those feelings of madness I experienced was really hard for me. I am a non confrontational person. I avoid conflict and disagreement at all costs. It makes me very uncomfortable and at times, I don’t even know how to react. In this case, though, I was forced to speak up for my child who can’t speak for her self. Luckily, it’s being dealt with and I, as her mother, will not put her back in that place. I’m saddened because due to this situation we are going to have to make a change in our routine. A comfort and an activity, an outlet, that once was so routine will be no more. But you know what, it’s going to be ok and we are going to move forward and adjust. It’s our only option. To dwell and continue to feel maddened by something is a waste of time. I’m not saying that it should be ignored and swept under the rug, because we would NEVER let that happen. But because it happened, it was dealt with, we move on.
As of lately, I’m recognizing and realizing how confusing Sanfilippo Syndrome is to the outside world. It’s our life and our everyday, so I think I just automatically assume that people would get it. I believe it’s especially hard to understand because Livia’s appearance isn’t that different from a typical kid. Because she looks “normal” people expect that she can do what kids her age can do. When we meet someone out in public and they acknowledge her and talk to her and I explain that she can’t talk, it’s confusing. Why can’t she talk? Well, how much time do you have? Just yesterday, I had Livia out in her wheelchair and we saw someone that has never seen her in her wheelchair. This person asked me “why is she in that?” Can’t she walk? I explained that Livia can walk, and we like to keep her walking, but there are some situations that she needs to be in this chair when her mobility is compromised or that the situation requires her to be more safe in the wheeelchair. “HUH”….. was their response. I really don’t mind when people ask me questions. I’d much rather talk about Livia than not. I want everyone to understand my sweet girl. Livia takes a lot of “hands on.” She needs a lot of guidance. Can you imagine walking up to a child and placing your hands on their shoulders or taking their hand and forcing them to walk somewhere? No, you wouldn’t do that. However, Livia requires that. If you just let her go, she’d run. She would not know where she’s going, which direction to turn. She depends 100% on others for everything. That’s Sanfilippo in a nut shell.
I would not trade my Livia or Finley for anything. I would spend the rest of my life caring for them if I could. Somedays I’m tired, my body aches from carrying Liv, but I’m so happy they are mine. I’d pick them every time, if given the choice. Everyday I discover something new about my girls, life, and myself. This gift, these realizations, have helped me in the process of forgiveness and moving forward. Because really, it all boils down to plain and simple happiness and love. If I wasted my time and energy at being mad and plotting defeat against something or someone else that may have wronged us, I’d miss out on discovering how precious and fragile moments with my family really are. A thousand years wouldn’t be long enough to be their mom, so you better bet that every second I get with them are going to be rich. I don’t have time for anything less.