Maryam is 1

My dear Maryam, a year has passed since your miraculous birth and I don't know where to begin. One year ago today, your grandmother, your father, and I were in the delivery room with 17 medical professionals awaiting your arrival. We had no idea what your future would hold and whether you would even survive with the medical issues you had. At that time, we were unaware of the resilient fighter inside of you. Little did we know the vast way you would touch lives around you in the upcoming weeks and months. 

I asked that God not burden me with more than I can handle, thinking I may not be able to handle such a huge task. But God proved to me fairly quickly how you were anything but a burden. You were a blessing in disguise and you continue to open up doors of mercy and hope for us. Every day since your birth, I have learned something new. You have been the source of happiness, peace and contentment in our household. You are the glue our family needed to get us closer to each other. You are our teacher, and to say that I look up to you would be an understatement. 

There came a day in my life where I convinced myself that I will never learn anything about medicine. It never interested me, and even disgusted me at times. One day, my father who is a cardiologist tried teaching me how to look for an ear infection through an otoscope and I couldn't do it. Fast forward a few years and here I am with a mini hospital in my own home. Changing trachs has become a weekly routine and I talk to medical professionals more than my own friends. And the funniest part is, I'm actually enjoying it. Maryam, you taught me there is more to life than living for yourself. Caring for someone with special needs goes a long way, especially when they have a loving personality like yours. The selflessness and patience you have helped me attain is an indescribable feeling. 

Maryam, you have taught your older sister so much about strength and courage. You have opened a beautiful world of medicine for her, which she thoroughly enjoys every day as she pretends to suction her dolls, put trach ties around her baby's neck, and use a nebulizer on her lamb(lambie). Tasneem's love increases for you everyday. Seeing the milestones you reach is the best part of her day. Grabbing toys with your small right hand, kicking your small right leg, and attempting to roll are all the most exciting news for her. Tasneem is honored to have an amazing little sister like you. 

Maryam, you may not move your right hand as well as your left, but you have the extraordinary ability to move hearts like no other. Not a person that met you wasn't touched by you. You provide a sense of peace and tranquility to those around you. Never ever let your small right sided body get in the way of your pursuit at life. You will do great things and already have, more than you can imagine. You have no limits. You can do anything you aspire to do. Believe in yourself and in your ability to reach the sky. 

I can write forever about you and about how much you have changed our lives to the better. We struggle at times, but who doesn't? Everyone has a certain struggle in life but the key is to remember this life isn't perfect and that God will reward us in multiples for our patience. And you Maryam, remind us that every day. 

Thank you Maryam for what you have taught us and continue to teach us. Keep being the fighter you are; We will always be there for you. You have friends, family, nurses, PT's, RT's, doctors and so many that love you and will continue to be a part of your loving growing family. God is great. Thank you God for the infinite blessings you have given us. 

The best gift you can give Maryam on her 1st birthday is a sincere prayer for her health.

Struggles: our blessings in disguise

When I was little, I used to think this life was eternal. It was all about having fun and being with friends and family. As I grew older, I slowly discovered I was wrong. I learned about death and the hereafter. In my adult life, I often asked those around me why our daily life is seldom focused on the fact that we one day we will return to our Creator. In the back of our mind, we know that one day we will die and be accounted for our deeds, but our daily activities suggest otherwise. It is only when a calamity strikes or through a death of a loved one do we really remember and shift our focus back to the hereafter. And even then, that mindset of living for the next life doesn't last long. We eventually get sucked right back into the routine of the life of this world. This whole concept has boggled my mind and I often complain to my husband and close friends why that happens. Although I enjoy life, traveling, eating at awesome joints, hanging out with friends, I don't want that to be my focus. I need something that will constantly remind me that this life isn't what I'm living for. Last Ramadan, I was asked in a course I took to name 5 things I desperately want. I didn't want all 5 things to be worldly so one of my wants was to always live for the next life and not get caught up with this world. And a few months later, she came: my daughter Maryam. She would have many health issues that forced me to remember why I am living. Today as I write this, I've been living in the hospital with her for almost 2 months. Tomorrow we will discuss her prognosis with doctors and decide what steps we want to take regarding her. I have come to acceptance that even if it means that my life will never be the same again, I will do what I can to have her living comfortably at home with us. That may mean she will come home with a tracheostomy and ventilator. She will need more care and attention than ever before and she may have a 24hr nurse that lives with us temporarily. She won't be able to travel much and go out of the house as much as we like, but her presence will God-willing be the peace in our house. Our constant physical and emotional care for her will be our constant reminder that this life is temporary. 

When our life is lived without any struggles, we may have a hard time living for the next life. But when we have a struggle, whether it be adopted orphans that rely on us, a tiring job we must keep to provide for our family, a mother who lives with us because she has no one else, a sick child who is dependent on our care, a small house that barely fits the family, a home country we are no longer welcome in, or any other physical/emotional struggle, we can't help but remember that life is short. We aren't looking for the perfect life here. The next life is what we are aiming for. When we engrave that thought in our mind, suddenly, our daily struggles seem almost insignificant. When you seek the happiness of the next life, God won't let you worry about living the worldly life many try so hard to attain. 

For this very reason, don't cry over a calamity or hardship, but instead, rejoice. Know that God wants you to remember why you were created. If your life is a constant struggle today, rejoice in the fact that when you live through it with patience solely for Him, being content with little, then you WILL be rewarded immensely in the hereafter. Every good deed counts. Every single one. 

Maryam is my constant reminder to not live for this life, but instead, focus on the next. 

When fear became hope

Sometimes what you fear most can become the best thing that ever happened to you. I get angry at myself when I remember my state after finding out the baby I was pregnant with had health issues. I was sad and couldn't understand why God would test me with a baby who would have special needs and long-term disabilities. I was shocked and frustrated, almost depressed. Many around me suggested abortion, saying I wouldn't be able to handle such a difficult life. I was in distress, so I prayed and asked for the best. I prayed that she become the reason we, my husband and I, enter paradise. I prayed that we are strong enough to take care of her in the best of ways. I prayed to become a mother that doesn't live for this world, but one that prepared for the next, the aakhira. Her birth, Maryam, would teach me countless lessons, lessons I thought I would never grasp, that never crossed my mind, and that would change me forever. She still teaches me each and every single day. I realize now that she was the answer to all my prayers. She makes me strong and helps me overcome my fears. She reminds me every day that this life is temporary. Sometimes, I wish every single mother could have a child like Maryam, so they can taste the same sweetness and see how many doors open through a baby with special needs. Some expecting parents may worry when finding out their baby has health issues because they didn't "sign up" for that. They want a healthy child like almost everyone else. But what if I told you that you are the lucky one. You are the one that will be blessed. You are the one that will come out stronger. You are the one that will realize how selfish your world once was. You will be happy and content. Trust God and He will handle your affairs. 

Doctors today have told me that they don't know how much longer Maryam's body will be able to tolerate her right lung being collapsed and with it causing other health issues. Her immune system has proven to be weak and keeps sending her back to the hospital for treatments. Hearing this breaks me like nothing else. And it's ironic that months ago I was in distress about her birth and now I'm in distress about her ever leaving. For that reason, I am taught a major life lesson. Maryam has taught me that if God gives it to you, then you can handle it, no matter what it may be. And the most important lesson so far is to never get attached to this world, because sooner or later, it ends. But the hereafter is real. As God says: "وَالْآخِرَةُ خَيْرٌ وَأَبْقَىٰ

The Hereafter is far greater and more everlasting."

No matter what faces you and I in this life, remind yourself that no one lives here forever. One day, we will all meet our Creator. Maryam is teaching me these lessons now and she is just 7 months of age. I pray that she only increases my faith in God and takes from her name like Mary the mother of Jesus, and overcomes any obstacle that comes her way because of her trust in the one and only, God. Ameen. 

Sometimes what you fear most can become the best thing that ever happened to you...

Be Grateful

If staying in the hospital with Maryam for over a month has taught me anything, it is to be grateful. Yes, she has health issues that keep coming up and every time we tackle one medical concern, another one arises. Yes, our family life has been somewhat unstable from sleeping in the hospital to taking my older daughter to different family members for them to watch her, to my husband not working much and to us not having a social life at all. Yes, we don't know what is to come with Maryam's health needs and when she can even leave hospital and come back home. But with all this going on, all we can say is alhamdulillah. All thanks to God for all the blessings we have. Our daughter is sick and has an extremely rare syndrome but she has a hospital close to home that is taking great care of her. She is in good hands. She is getting the necessary medical attention and that is all that matters. Sitting right by her bed in the hospital now, I can't help but think of how many mothers out there have sick children but no doctors or hospitals near by. People are fleeing countries just to get a chance at finding someone medically trained to help. Staying here has taught me how worldly our world has become. Sometimes we are so focused on living the perfect life, and having everything the way we want. My family in Maryam's first hospitalization slept in the hospital in her same room for 3 weeks and we were content. It made us realize that we have so much more than what we need in our every day life. When everything is the way we want and we have it all, it becomes hard to be grateful. But when things are unstable, you realize how selfish you once were. In my head when I hear mothers complain about how their babies are driving them insane because they won't take their naps, or that they made a huge mess at home, I almost laugh inside and want to tell them to be happy. Be happy your child is healthy and at home with you. Look at the bright side of things. I know while I write this now, someone has it much much harder than I do. And for that, I say alhamdulillah. Thank you God. Gratefulness is a beautiful thing. 

An act of heart

I am writing this and I can't stop crying. I've been at the hospital a few days now with my 6 month old Maryam who was with born with a few health issues and suddenly things got worse, so she's getting different tests and exams. When my husband came back to the hospital today from an outing with my 3-year old, I told him I really needed a break from the hospital to get some fresh air. I drove to a nearby restaurant and sat outside enjoying the sunset and quiet dinner. I asked for the bill and the waiter gave me this note that read: "I noticed you had a Levine Children's Hospital lanyard on. I wanted to buy you dinner because I know how hard it is to be in the hospital. I wish you well. You are in my prayers". I realized I was still wearing the ID parent badge that parents wear while in the hospital with their kids. This note had me in uncontrollable tears. It absolutely blew me away. I was trying to stay strong and this sweet and giving gesture took the emotions out of me in a second. Unfortunately, this gracious person had already left the restaurant. I wish I was able to meet her and give her a huge meaningful hug. The world has some awesome people in it. Thank you. You touched me beyond words. #LCH 

I salute you

I have met some of the kindest most giving people throughout my daughter's journey with special needs. Her supervising physical therapist knew the health struggles Maryam was going through being admitted to the hospital twice this week, and she didn't leave our side. She stayed with me at home while I got ready to pack, came with me to the pediatrician to help me along the way, drove with me to the hospital and stayed until we were able to speak with doctors about what's going on. She got a call amidst all of this from her family saying that her father was admitted to the ER because of a fall. Her brother with down syndrome, who was the reason she went into the special needs field,  anxiously wanted her to be with him. With all that going on in her family, she didn't leave Maryam's side right away. She made sure she was in good hands before leaving to her family. I saw selflessness and sacrifice. I will never forget how she stood by me and cared so much about Maryam as if she was her own daughter. I have a whole new level of respect for all those in the field of special needs. It seriously takes a tremendous amount of patience to be in it. Hats off to you. 

My Therapist

As I was finding out more and more about Maryam's condition while I was pregnant with her, the more stressed and worrisome I became. A month before I gave birth to her, I sought help from a therapist. We spoke about how she could counsel me after Maryam's birth and help me emotionally along the way. We also spoke of strategies to heal my current worries and anxieties. Little did I know that Maryam alone would end up ridding me of these anxieties. The reason I asked for help became my actual treatment. Maryam has built me up emotionally in ways above my own capacity and has healed personal anxieties, many of which I thought would never escape me. Today, Maryam is my counselor and therapist in every meaning of the words.