I Will Always Be Here for You

The day you were born, a little over fourteen years ago, I would never have imagined the journey that I was about to start on. That first night, as you slept on my chest, skin to skin, I cuddled you and whispered that I would always be here for you. Little did I know how much this would mean literally, how much you would need me. And how much I would need you.

A few days after we went home, you were sleeping all day and keeping me awake all night. The pediatrician said there was nothing to worry about, that your circadian rhythm would kick in. But you kept not sleeping at night. After a couple of months, I was exhausted from sleep deprivation, I weighed less than before I got pregnant, and I got sick constantly. People told me to sleep when you slept, during the day, but I couldn’t do that because I had to take care of your three-year-old brother who needed his mommy and didn’t understand why she was so tired and crying so much. My little boy… How much his life got turned upside down… I wanted to breastfeed you no matter what, because I had nursed him until he was six months and I wanted both of my kids to have the same thing, I didn’t want to shortchange you. And the more I persisted, the more tired I grew, the less nutrition you got, and the more crying you did.

I knew something was off, I knew it in my gut. Mothers know. Everybody told me I was crazy, I was too stressed, I was sleep-deprived, and things would get back to normal. But I knew they wouldn’t.

By the time you were four months old, you were not gaining enough weight. Often you would throw up an entire feeding. The pediatrician became concerned and ordered some labs. That memory of holding you while they were poking your tiny arm to draw your blood, it still breaks my heart into pieces... But they found nothing. Over the next few months, I started feeding you formula to help you gain weight, and you slept better. That soothed my anxiety for a little while. But as months went by, I could tell that something was off. I didn’t want to compare you with your brother, but it was obvious that you did not reach your milestones. You had low muscle tone, you didn’t sit up, you didn’t crawl... But aside from that, you were a happy, smiling, adorable baby that we loved beyond any words. You didn’t give us only worry, you also gave us those incredible moments filled with joy and hope. When you started walking at two and a half years old, I thought my heart would explode with happiness.

During the first three years of your life, you saw dozens of specialists - neurologists, osteopaths, holistic doctors, naturopaths… even a shaman. None of them could give us an answer as to what caused your delay. Then one day, when you were three, they decided to test you for muscular dystrophy. They had to do a biopsy, take a tiny piece of muscle from your thigh to analyze it. I still see your little body on the gurney, your eyes closing slowly as the anesthesia kicked in, and I had to let go of your hand for them to take you to the operating room. It was like ripping my arm off my body. And the joy I felt as I saw you suck on a popsicle in the recovery room. You have always been so brave, more than I will ever be.

At four years old, you were officially diagnosed with congenital muscular dystrophy - more specifically: dystroglycanopathy, caused by a POMT1 gene mutation. You also have global developmental delay. All this medical jargon means nothing to me, except that your neurologist reminds me at each visit that research is under way, that they hope to find more about gene editing and possibly a cure. But until then, what difference does it make? You’re my daughter and I love you just the same. It’s just more challenging every single day.

But I knew long before that. You had been labeled “special needs” by the time you were a toddler. It has always been a rollercoaster of emotions, a struggle made of questioning, anger, and doubt. Why us? Why our daughter? First, I went through a period of guilt. Did anything happen during my pregnancy without me noticing? Did I eat something I shouldn’t have? Did I get some virus that didn’t make me sick but hurt my baby? Is it because I stopped taking those prenatal pills that gave me heartburn?

Your diagnosis answered part of those questions. Your condition is congenital, meaning that it is inscribed in your DNA. At that point, my guilt morphed into a different form, a more spiritual one. Was it karma? Did I deserve this because of my past mistakes? I began exploring that route. I talked to a spiritual guide who helped me make sense of all this. After hearing my story, he told me something that will stick with me forever. He said: “Your relationship with your daughter is extremely special and it goes both ways. You’re here to take care of her, but she’s also here to take care of you.”

He was right, you changed me. You made me question myself. I am kinder and humbler than before. Another thing I learned was to live in the present. Upon hearing that you would have significant intellectual delay, I started wondering what would become of you after your father and I would be gone, imagining your brother having to put his life on hold to take care of you. I became obsessed, not sleeping at night, and eventually sinking into deep depression. Until the revelation came to me: who knows what tomorrow will be? I learned not to project myself in the long term and live for the moment. Why should I worry about what will happen when you’re twenty while you’re only four? That was my ten-year respite.

Now that you just turned fourteen, I feel those demons catching up to me. The anxiety, the fear for your future. As you are growing, your difference is becoming more noticeable. Nothing breaks my heart as much as when I hear you say that some kids didn't include you and you were left alone. You are almost an adult, and so many questions are pressing in my mind and keeping me awake at night. On good days, I think to myself: you have learned so much, you have come so far! On bad days: you still have so many challenges to overcome! But I keep trying to live one day at a time. I trust you and I trust your destiny.

My sweet girl, I am still struggling to see your handicap as a blessing, not a curse. But there must be a reason why the universe chose me to be your mother, and I want to live up to it. For years, my dream was to save you, to cure you, to make you “normal”. I would have gone to the end of the earth to find the right treatment for you. But I was wrong. Now I know that loving you means accepting your challenges as part of who you are, embracing your difference, supporting you, being there all the way. And being grateful for how much you taught me. Your courage and your determination inspire me. Your thirst for love and affection made me a more loving person. I want the whole world to see you the way I do, this beautiful, funny, quirky young girl with a huge loving heart.

My daughter, you are a pure soul, just like the unicorns that you love so much. I dream of a happy and fulfilled life for you. I dream of you being surrounded by loving and caring people. I dream of you being accepted and appreciated for who you are rather than being judged for your difference. I dream of you making the world a better place. I wish with all my heart that a special someone sees how much you shine, that you have the wedding you dream of, the one you have been talking about for years, with a beautiful dress and flowers in your hair. In the meantime, as I promised you on the first day of your life, I will always be here to take care of you. And I am blessed that you are here to take care of me.