I remember the first time I held you, still warm and wet. I couldn’t stop saying how beautiful you were. Your curly, dark hair and olivey skin, your long fingers and lashes. I held you close and breathed you in. I said that if I could bottle that very moment up forever so that I could open and relive it again, I would. Because that was the smell of true love. Everyone laughed. But, I meant it.
You were only a month old when things started going wrong. Reflux, they said. So we started you on medications. You looked better and were able to eat again. By five months you were filling out, and growing well. You eyes danced when we made faces. You giggled when you’re little brother said silly little rhymes he made up for you. You bounced and cooed and smiled like a happy little baby.
By eight months, nearly overnight, everything began to change. You stopped looking us in the eye. The look of joy in your eyes was replaced with one of distance. Your smiles turn into wailing complaints. You stopped being happy. Stopped communicating. Stopped developing. And started regressing. Forgetting things you had learned.
When you were 10 months and had spent yet another day crying–only crying–I took you back once more to the doctor and demanded they figure out what was wrong. Again, they checked you out. Again they shrugged. Again they suggested another reflux medication.
By 11 months we had an appointment at Johns Hopkins for more tests. I was so hopeful for you. For us. I was sure they would find the answer. They poked and prodded and tested. We met with the team of doctors in small, dark room. I was shaking. I was tired but ready for whatever it was. But, I wasn’t ready for what they told me:
“We can’t find anything wrong. Everything looks normal. There is no reason for her reflux. Are you sure she isn’t just a little fussy? Some babies are fussy you know…”
And I started to cry. Because nobody believed me. Everyone kept trying to convince me nothing was wrong with you. It was in my head. I was being overprotective. I just didn’t have enough experience as a mother.
Nobody else stayed awake with you all night as you screamed. Nobody else heard the little voice within those screams that said, “mommy! Please help me!” Nobody rocked you day and night, and put up with the tantrums that lasted hours and hours. Nobody saw how you would shriek when water touched you as if were burning your skin. They didn’t understand how the moment you ate anything, you puked it all back up. They didn’t see how the simple motor skills you once had were being quickly lost. All they saw was a young, tired mom on medical assistance.
But, I kept looking for help, like I had promised you. I Googled your symptoms, talked to anyone who would listen, read every book and article and forum I could find on early development. A mom who had gone through much the same trial emailed me a number of this specialist and told me I had to talk to her.
Within 15 minutes of our phone call I was crying. She believed me. And not only that, she wanted to see you. So we took you in to a team of specialists to be evaluated. There they sized you up, jotted down notes, asked many questions, and listened intently to all my concerns.
Not long after you were diagnosed as having Sensory Processing Disorder. Treatments and therapies were designed just for you and with a few months we all saw a big difference in you. At 18 months you communication skills had been around the 6-9 month level. By 24 months you were really catching up. You were keeping down solid foods and playing with toys. Sometimes you even looked at us and smiled.
Unfortunately, our insurance would only cover a small series of therapies and after that we were left on our own to carry out the therapies as we had been taught. Your OT reminding me often to remember to always educate myself so that I can be your best advocate.
But, you still weren’t sleeping. And you still screamed most of the day. Eventually, you began regressing again. I asked the team to see you again but was told they can’t re-enroll any child which had already graduated their program. They suggested I pay out of pocket for your treatments–something that no matter how I saved I could never begin to afford.
Your dad and I worked so hard with you. He quit his job and started working part time from home. We stayed with your grandparents in a tiny apartment so we could spend all of our time and resources on you. He took day shift, I took night. We rarely saw each other except to pass you off before we crashed for a few hours and tried to block out your wails and sobs from the other room.
I did my best by you, my daughter. I really gave it my all. And I wish that had been enough. But, my exhaustion got the better of me and depression started to take over my weary mind. As very, very much as I loved you, all of the sleepless hours of tantrums and crying all day wore on me. I could no longer think clearly enough to be able to advocate for you. I gave up on doctors. I stopped calling the school system. I stopped trying so hard. I cut off anyone who said anything unkind about you. It was just us, our family, alone doing our best and waiting for better days. I never trusted another person with you again. I kept you all to myself because I was too tired to fight and too scared to let you go.
You are nine now. Today you came home from your second day in public school and tears poured out of the sides of your long lashes. As big as you are, you climbed up into my lap and cried into my shoulder. The kids think you’re stupid. The teacher doesn’t explain anything. You can’t spell like the other kids. They don’t want to play with you. You feel so dumb and never want to go back. You asked me to keep you home forever.
And I want to. I want to more than I can tell you, my sweet little girl. I want to hold you in my arms and never let anything ever happen to you. Because you have gone through more in your short life than anyone ever should. You have overcome so many challenges that most people never have to face. When people look at you they can’t see any of that like I can.
My little girl, who wears only cotton with no tags, and skirts because pants make you itch. My girl who can’t wear socks because they feel like fire on her feet. My darling little lamb who would rather poke herself in the eye than ever feel the cold of winter on her face. My baby, with the hazel eyes and olivey skin, who has written a very extensive plan on how to make a time machine because you want more than any other thing in this world to be the first one to travel through time.
I love you more than anything in this world. That’s why I have kept you home this long. I wanted to keep you safe and give you a chance to grow in a safe environment before letting you out on your own. Because, I know the world can be so confusing and hard to navigate even when you don’t have any special needs to consider.
But, I have to stop being scared. We have to be brave, together. We have to give this a try.
Your mommy knows that you deserve much more than she can give you. She is tired and worn out and you need fresh energy. You need people in your life who can show you the way. Who can teach you the things your mommy doesn’t know. You need to learn to stand up for yourself and make friends and deal with hardships that we all face. You can do this, you just need to figure that out.
And I need to let you.
I want nothing more than to protect you from every bad thing in this world. But, my sweet girl, this is the best way I know how. Please, understand. Please give it your best. I promise, my shoulder will be here for you to cry on whenever you need it, for the rest of my days on this earth.
I will help you through this.
I love you, Eve.