Minutes before Elizabeth was born her dad and I were given a choice that no parent should ever have to make about their child. She was going to be tiny, I would not hear her cry and she would not be breathing. She would die within minutes. There would be no guarantees that they could save her; her life, if she even survived would be met with challenge after challenge and ours would forever center around her. There was never a question about what that choice would be – you save her, you take any and all life saving measures to give her a chance. Again the doctors would take us down a path of obstacles we would face, the lifetime of doctor appointments, surgeries and hospitals … a life we may not be prepared to make sacrifices for. I had made a deal with God. You leave her with us and we will love her, accept her and give her a life that she deserved no matter what. We knew the odds of a healthy, normal life were stacked against us but there was always that hope we would cling to until that fateful day when the diagnosis went from probability to reality.
Over the years we have been faced with many choices with Elizabeth, some of those harder than others. Some we have questioned; some we have regretted, some we have cried and laughed about; many we have breathed a heavy sigh of relief over. I honestly thought I would never have to be faced with a choice any harder than the one we had to make 14 years ago. Oh we have come close, too close a handful of times but a few weeks ago I was there. Me, her dad and a room full of people telling us once again what our future would hold. Choices, decisions, fear, anger, sadness and a lot of tears. Probably more tears than I have ever cried over Elizabeth.
On the eve of this Father’s Day I find myself reflecting on a choice that was made for me by my own parents. Unable to have children of their own, they set out on a journey to give a child life, love and a future that she would not otherwise have. I know absolutely nothing about my birth parents. I have no idea who I look like, where my blonde hair and green eyes come from – although Caroline tells me it all comes from Scandinavia! She is basing this information on her recent 23andMe results. For the record, 5% of me hales from Africa, which Mark says explains my current island tan! I have often wondered about my biological mother and father and when I was Elizabeth’s age I was bound and determined to run away from home and find them. It would take me a few years to figure out that the only parents I would ever want were those two people who stood in front of a judge promising to raise me in a loving home, to provide for me, to give me a life that my birth parents couldn’t give me. They gave me a name to be proud of and have spent the last 47 years fulfilling those commitments. You know, I am just sitting here thinking that there is something that my birth mother and I share … we both were faced with the choice to give our daughters a chance at life. I have never really thought about that until this very moment. What an emotional bond to share with the woman who gave you life and you have no idea how to even thank her for that.
I was not an easy child to raise. Nothing there we really need to elaborate on, but my mom and dad had to make some not so easy choices for my life. It was incredibly challenging at times and I am sure they wanted to give up but here is the one thing I have come to admire most about my parents … you never give up. Ever. Life has been hard, their life and mine has dealt us some really hard times. Times we had every reason to walk away from and not a single person would blame us but you just don’t give up on your family as they are all you have in this life. This is something my dad tells me no less than four times a week! And speaking of my dad … do you want to know who I look like? Him. Do you want to know who I act like? Him. Do you want to know who loves me more than anyone? Him. More than my husband, more than my children, even more than my mom … him. A fathers love for his daughter is a bond stronger than any other. And my dad has spent every single day of my life making sure that I have been okay, Physically and mentally; emotionally and spiritually; even financially. The sacrifices that man has made for me is something I can’t even put into words. As parents that is just what we do, we sacrifice our own lives at any cost for our children. ALL of our children, ALL of the time. The healthy ones, the sick ones, the ones who need us the most.
Raising a child is getting harder and harder with each passing day. I worry so much about Caroline and Alex. My worry about Elizabeth is different than with the other two. This can be a cruel world and keeping them safe from it, yet allowing them to live and grow in it is a challenging job. They have learned first hand that life is hard and at times just really unfair. Having a sister with special needs has forced them to walk away from a normal childhood and travel down a path that requires sacrifices even from them. Sacrifices that they don’t always understand but have to make and has caused them to look at people differently. They tend to stand up for those that get picked on, they have compassion and a kind spirit you don’t often see in kids their age. My sweet Carolina is an internalizer. She keeps her feelings guarded and deep in her soul. She will only let you in if you can be fully trusted. She doesn’t talk much but if you look into those sea blue eyes of hers you see a girl so much wiser beyond her years. Alex, who is just like his mama is a bit more vocal about his feelings. He will not hesitate to ask you to stop staring at his sister no matter how old you are or will step in front of Elizabeth to keep people from staring at her. Mark and I recently had the opportunity to get away for a few days and on the first night my phone rang late, like midnight late. A bit panicked I picked it up and I heard this whisper come from the other end …
Mama, Elizabeth is upset so I told her I would call you so you could tell her you love her.
He is 11 years old and he gets it. Family is everything; we make sacrifices, we love unconditionally, we accept one another and we embrace the challenges that come with this life with Elizabeth.
Before Mark and I got married I was very open about the dynamics of living with Elizabeth. He didn’t blink twice and gave me this look as if to say … AND?? Okay, well it’s very different dating Elizabeth’s mom verses becoming her stepfather and being present in the house full time. The sleepless nights, long days, never ending lists of doctor appointments. Mark sat me down and told me knew exactly what he was getting into and was ready to take it all on. At that very moment my respect for Mark as a father could never be greater however that would prove to be challenged. The kids went to their dads every other weekend … Friday afternoon through Wednesday morning. For the last six years this has been our normal. People have often asked me about my time off from the kids and they always seemed a tad disappointed when I would share tales of grocery shopping by myself or three days of Netflix binges in my pjs! Taking care of Elizabeth is a full time job. 24/7 around the clock. Sleep doesn’t come easy for her and most nights we would be lucky if we made it a full 4 hours. Mark would sometimes wake up before me and let me know she was awake or if she slept longer than normal he would roll over and whisper for me to go check on her. Mark and Elizabeth formed a bond. She would look for him or if she heard him she would call out for him. He is so good about going straight to her when he gets home and I have noticed that every time he walks by her he puts his hand on her arm. He makes sure she is always with us, wherever we are as a family. He has picked up on her nicknames, affectionately refers to her as “our girl” but my favorite thing about Mark and Elizabeth is their communication with one another. He whistles, she smiles; he whistles again and she laughs. The whistle changes and she starts this chatter with him. It’s like their very own language that only they get! Mark and I came to appreciate the few days we would have alone together. Elizabeth was always with one of us; Alex and Caroline were keeping us busy with their schedules and Marks son was always a welcome addition on weekends. Life was busy, really busy! We would try to spend as much time together during those extended weekends, thankful for date nights, movies at home and those occasional nights that allowed us more than just 4 hours of sleep. That would last 3 months into our marriage and then life with Elizabeth would take the sharpest turn I’ve experienced with her yet.
It was the ultimate choice and even a month later it still seems unreal. A choice that changed the course of everyone’s life – forever. When you are given a child like Elizabeth you have been chosen wisely. Not everyone was made for this kind of life. I say this often but it takes a certain type of person to raise a special needs child. You must be built for war. Now God and I have gone around and around in circles over this very subject. I have spent a great deal of time asking “what were you thinking?” and a whole lot of “why me’s …” There have been times I have wanted to give up, walk away and just say I can’t do this anymore. Sleepless nights on end, the frustration of not knowing what she wants or needs. The physical demands of lifting, changing, transporting … your life is no longer your own. This child depends on you for every single minute of every single day. Feedings, medications, bathing; she needs your undivided attention and how in the hell do you do that when there are other children in the home and a spouse who is not biologically bound to this little girl? How do you choose between your healthy children and this handicap child? How do you blend these two worlds of normal and needs? Well, remember that deal I made with God? The one that I begged and pleaded with Him to leave her with me no matter how and I promised to take care of her and give her a life? That’s how. You make sacrifices, you teach your children to be tolerant and accepting of others … that everyone deserves a chance. God chose us to be Elizabeth’s parents. We, as her mom and dad made the choice together to ask that her life be saved. We knew the what if’s, we knew the risks. God trusted us to honor our word that we would sacrifice our own lives so that she may have one.
So how do you walk away from that? How do you decide that your healthy children are more deserving than your special needs child or even how do you justify choosing a child with health issues in your current marriage over your special needs child from your previous marriage? Sitting in that room 14 years later listening to her dad tell everyone around that table he wanted “very limited time” with his daughter I wasn’t surprised. I knew it was coming; I had heard the stories, had seen the signs each time she would come home after a weekend at his house. And while I was not surprised I was devastated. Not for myself, but for Elizabeth. Her dad had just given up on her and the choice was all his. He blurted it out with such exasperation as if he had been holding it in for too long and if he didn’t say it right then he might not actually be able to go through with it. She was officially mine. His very limited time was going to be granted because you can’t make someone parent who simply does not want to …. as I was told by the courts. His daughter would become a visitor in his home a mere few hours a month. It was a choice like no other. As we hammered out the details he refused her over and over again. He wanted the other children, just not her. Not anymore. It had gotten to hard for him. Eight days a month was just too much for him. It wasn’t fair to him, to his wife, to his other children and to their everyday life. The sacrifices were too much and no longer willing to be made.
I was moved to a different room where I sat with my elbows on my knees, my face buried in my hands and that familiar sting behind my eyes. I didn’t even care who saw me, who heard me as I sobbed for what seemed like hours. My head and my heart swirled around one another as I sat there trying to figure out the hows and whys of what had just happened. There was an overwhelming sense of fear. Fear that I would fail, something I had felt many times with Elizabeth. Fear that Mark would leave, this was not what he signed up for. Let’s be real here. If her own dad couldn’t handle it how could I expect him to stick around for 365 days a year of Elizabeth? Fear that Alex and Caroline would get lost in a world of needs. I felt a hand on my shoulder and looked up to find no one in the room with me. I closed my eyes knowing that hand belonged to the One who was going to burden that fear for me; the One who I cried out to promising to take her, no matter how she was. We had made that deal.
In 1966 President Johnson proclaimed the third Sunday of June would be celebrated as Father’s Day. It wouldn’t be until 1972 when Nixon would sign it into law. Just one year earlier a baby girl was born on Father’s Day and a man became a dad. I have always found it so ironic that I was actually born on Father’s Day … giving my dad this deserving title. Tomorrow we will celebrate the two most important men in my life. Two men who made a choice to be a dad to a daughter that wasn’t his. Much like my birth mother and I share the bond of choosing life for our daughters I am honored that my dad and my husband share that similar act. I have often spoke of my relationship with my dad and his choice to be a father and now I have the honor of watching my husband follow in those same footsteps by choosing to be a dad to Elizabeth. The weeks following the choice her own father made to walk away and the fear I had of Mark deciding that this was not quite the life he had originally planned, I saw a man who much like my own father accept a child not his own. As much as I had come to respect Mark as a father to his own children, I was overwhelmed with the amount of respect that had grown as he took on his new role of becoming a dad that Elizabeth would need in the coming months and years. As I have said time and time again, my life has not been a series of coincidences; nothing random that just happens. No, this life has been well thought out, well planned. From my own birth parents placing me up for adoption, to Marks birth parents doing the same; to my dad becoming a father to a little girl who would need a dad, to a husband that would move into the role of a lifetime by becoming the father she would need.
Happy Father’s Day.