Lately, Matt and I have been under a lot of stress and we are riding the emotional roller coaster. In fact, until Emerson was born, I did not truly understand emotions.
Now, anguish, pain, devastation, heartache, tragedy, sorrow, and depression have depth and meaning. But there is also a newer, deeper meaning to joy, peace, triumph, pride, hope, happiness, love, and faith. My whole life, my whole sense of self and well-being are tied up with Emerson right now. And I know it’s not healthy or safe, but he’s my son. How could I want anything for myself other than everything for him?
And I am finding that it is harder and harder for me to express what I am feeling. These words are not enough. It is not enough to say “Today I was sad” or “Today I was angry”. It’s so inadequate and does not even scratch the surface of my emotions.
Yet I am also finding it easier and easier to understand other people. My capacity for empathy has increased tenfold. I understand now how physically painful it is to not hold your child in your arms while watching them cry out without a sound.
I ache for my son. It tears me up to see him struggling to function. It drives me crazy knowing that no doctor can give us an answer. It takes Emerson three times longer to accomplish his goals. It’s not just his heart that cause him problems. And I don’t know what that means for him. For his future.
And every day I am here, I realize how easy our family has it. Sure we are not the “best case scenario”, but I have met so many children and families worse off than us.
Today a mom is going home with her four-year old son. A moment of triumph undercut by the stark reality: his heart is a ticking time bomb. The doctors are sending him home because they can do no more for him. He picked up a virus that no drug can cure, no surgery can fix, and no transplant will eliminate. He may have a whole lifetime ahead of him or he may not. This mom is so strong and such a beautiful person. I don’t know where her strength comes from. He will be her second child she loses.
Another mom is only 19. She has been here with her son for three months. She is not married and not even sure if she is in a relationship with the child’s father any more. She hasn’t gone to school. She doesn’t have a job. She doesn’t have a car. She doesn’t have a home. She doesn’t have any help. And she knows this. She accepts this. And she is strong enough to give her child up for adoption. She is brave enough to leave here without him. I cannot imagine how difficult that would be. I could not walk away from here without Emerson. But she can and she will because she wants the best for her child. She is braver than I could ever be.
There is a couple who I still consider “new” although they’ve been here for a month. Their daughter was born with an undetected heart defect, and a serious one. They were transported here and their daughter had a few weeks to grow before her surgery. Her surgery was 12 hours. Afterward she was put on ECMO, a heart and lung bypass machine. She is off of it now, but her parents found out she would need open heart surgery every three years to keep her heart functioning.
Do you know how painful it is to not know what will happen to your child? Instead of thinking of prom and high school, I wonder how he will be doing in an hour and if, when I wake up in the morning, he will be re-intubated. I’ve gone from hoping he will be an all-star, to wondering if anyone will talk to him or be his friend in school. There are no guarantees. Emerson could be perfectly “normal” with no outward problems. Or he could have sever mental retardation. Or anything on the spectrum. And I cannot imagine sending him into a world where people do not love him, where they cannot see him, where they don’t realize how hard he’s worked to LIVE. How do any parents do it? How do they send their child to school knowing how cruel and intolerant people can be?
And how can it be so easy for us to forget about people. To shuffle them to the side because their abilities make us feel bad or uncomfortable. How can we deny them basic human dignity?
I want everything for my son. I want him to have a best friend he spends his summers getting in trouble with. I want him to ride a bike and play sports. I want him to be invited to birthday parties. I want him to go to prom. I want him to fall in love. I want him to get married. I want him to have kids. And I want everything for him that we take for granted. I want him to eat from a bottle. I want him to crawl. I want him to walk. I want him to talk. I want him to learn his alphabet. I want him to learn his numbers. I want him to tie his shoes. I want him to kiss and hug.
I love Emerson so much. It is beyond painful to see him struggle. I feel so helpless all the time. And I find myself pleading with God to somehow let me suffer through all this. Pleading with him to heal Emerson. Pleading with him to just give me the strength to keep going.