On This Episode of “Where Is She Now”

This has been the year of growth for our family. We have grown both physically and mentally. Livi is almost three years old now! To say that Livi is “almost three” are words that at one time I was not confident I would ever say. I have mentioned before there were times I would take photos while we navigated our deepest pains, they were not to share on social media or for any sort of display, they were for my heart. For what felt like one day soon that was all I would have left of Livi, photographs. To say Livi is almost three is a testament to what depths God had planned for me. Through the journey of giving birth to a medically complex, disabled baby I had to undergo a transformation of my own heart, my own plans, and mostly my view of the world. I found healing and began to see how God wants to use me to bring healing to the world.

Shortly after both of my daughters were born I gave them each a spiritual nickname of how their existence impacted my soul. My oldest, Mia, is nicknamed “Grace.” She taught me to give grace to myself, to give grace to her, and to show grace to others. As a first time mother I was learning just as much as she was every day in her rapidly growing brain and body. She was learning to pick up spoons, how to walk, how to talk, all while I was learning grace and patience. We were learning and growing together, moving forward with resilience. Grace can be seen in big and small ways, as a toddler this could be an upset over choosing which color spoon to use, or which snack she wanted in the moment. No matter the depth, we navigated through each meltdown gracefully and patiently. Wouldn’t this also begin to prepare me for what was yet to come in my life.  After Livi was born, it was very clear early on of her impact, time and time again this miracle baby had doctors scratching their heads. One doctor once told us to “take her home and love her” in the context of her expected lifespan and abilities. Livi was given the nickname “Angel.” Through my new lenses of how I view our purpose in life it is amazing that I was given an Angel. At first I cried out “God, why me” with the most pain I could feel in my heart, broken. Through this transformation and my new view I now pray to God “wow, God, you chose me.” To be a mother or parent of a special baby is a task that is not easy. You find your voice, your strength, and you get to see life differently.

Our journey was unexpected, sudden. To have a disabled baby you first question yourself. What did I do wrong? I ate healthy, I exercised, took prenatal vitamins, what did I do? During my transformation I realized that it was not what I did, it was who I was. My heart was deserving of this type of love, God knew I had the patience and strength of a warrior.

Livi has taught us a deeper love than can be described. To never speak a word other than the occasional “mama” babble, to never do an act of service for anyone else, to require constant attention you must use your heart to live and find your joy each day. If my husband or daughter was to “roast” me I am very sure one of their quotes would be “find your joy”. I have said it time and time again teaching my own little ones that true joy comes from within. Using this unexpected circumstance to discover my core self, I found joy within.

Where is Livi now? Livi is living every day true to herself, being the angel that God himself created. Livi goes to 10 therapy sessions a week. She has three physical therapy sessions, three occupational therapy sessions, two speech therapy sessions, and two sessions at our local university’s children center focusing on cognitive and physical movements. I get to view Livi behind a viewing glass each week, and it rings true, there is never anyone who does not hold, play, or talk to Livi that does not have a smile and gentle voice. She brings out the best in us even in the smallest of moments. Although Livi cannot speak for herself, yet, she does understand what we are saying. She responds yes by shaking her head yes and she responds no by pushing your hand away or doing a waving away motion. She communicates in her own way, and you definitely know what she thinks! She has numerous facial expressions that are quite hilarious and she gets her point across whether she is pleased with the activity of the moment, or not.

I have an almost three year old baby. Not like treating your toddler as if they were a baby, but a true baby. My physical strength has been put to the test, lifting and helping Livi in her every move. There are days of exhaustion when I am smiling in joy, but my body is in pain. I had considered this early on, to be a parent of a disabled child your physical strength is of equal importance to the care and love you give. You are it, you are their movement and support in every little maneuver they do. Our home is still filled with bottles and pacifiers, shakers and high chairs, but the strength Livi has is amazing in itself. Her growth has increased tremendously within the last six months. It seems not very long ago I was cooking in the kitchen and look over to see Livi had pulled herself from rolling on the floor to sitting. Her back was still low and she was a bit wobbly, this was an inch stone celebration, but a celebration indeed. At this time Livi is going from laying to sitting every second she can, she is sitting up with her back straight and even reaching over for toys. We are continually working with Livi to crawl, at this time she sits up and lunges herself forward to reach whatever it may be that was not in arms reach. Livi loves music, she has several toys that we have conditioned her to associate with certain songs. You can hold up two toys with song associations and ask which one she wants and she will make a choice. She cannot speak, but she can make decisions.

When once our pediatrician was my weekly “coffee chat” so to speak, Livi is at such a stable condition that we have very few doctor visits. She is seen biannually by ENT, neurology, and optometry. Followed by the occasional “sick” visits to her pediatrician. I remember so clearly planning a vacation while Livi was young. We were going to Canada. As I began to plan for this trip, it was a lot of scheduling and precise timing. She was on oxygen when we planned the trip, her portable oxygen unit could last 4 hours without a charge. To plan which museum I would sit in the front lobby and let it recharge, what would the rest of my family do while we waited. Fortunately for us, by the time the trip arrived Livi did not need continual oxygen. We still carried it with us for peace of mind and “what if”. Being thousands of miles from home with no oxygen once seemed impossible, and now we do not even have an oxygen machine at our home. Not only has Livi outgrown so much medical equipment, the “what if” has also drifted away with it.

We fill our life with “what if’s” constantly. What if my daughter doesn’t like her snack today? I’ll pack two. What if her feet get hot on the concrete? I’ll pack water shoes, and so on. These are my current “what if’s” but as my children grow my “what if’s” will too. What if they do not get into the college program of their choice? What if they get in a wreck on a cross country trip without me? When I began to undergo my transformation I had to let go, it took time and a lot of fighting against it. Through letting go of my “what if’s” I found peace. When Livi was born it was “what if she can’t go to college?” “What if she never talks to me?” “What if she cannot drive?” Time and time again I would spiral feeling deeper and deeper pain realizing my what if’s could actually be very true statements. Each time I would pick myself up and live in the moment, it was in the moment I found my happiness and joy. The thought of “what if one day” was daunting and exhausting to consider. Months and months, and more months, I continued to let go of my “what if’s”. We are not promised tomorrow, when you read or see on the news of a child’s death or even an adults, everyone has a mother that did not expect that outcome. They lived each day joyful not expecting the worst, and even if “the worst” is inevitable we must choose to live in joy each day letting go of what we cannot foresee. This was all part of my radical transformation, choosing priceless moments over a preplanned mindset.

In less than a month is Livi’s third birthday. To the beautiful angel that brought life to my life, who lives unaffected by others opinions, who loves with no expectations, to my extraordinary baby we will celebrate the true joy that is Livi.