Chai Lifeline pays tribute to our heroic mothers in honor of the upcoming Mothers Day
Ora Lasko, Chai Lifeline Southeast
Suspecting that there is something wrong with your child is something that keeps you up late at night worrying. But actually receiving the news that there IS in fact something wrong with your child is enough to break a parent’s heart.
Getting the news that our son, Jake, had a rare genetic mutation called Hao-Fountain Syndrome at only eight months old completely turned my world upside down. In all the ways I’ve imagined my life, I have never thought having a special needs child would be part of the picture. It was something that I had to quickly learn to process and accept and then we had to figure out how our family was going to adapt to this diagnosis and how we were going to change our priorities.
When Jake was first diagnosed, people would tell me that God only gives you what you can handle and that I was meant to be the mother of this special child. But I think it’s rare to find a mother of a child with disabilities who says to herself, “Bring it on. I got this.” It took me many, many months to come to terms with this new life and I had to learn to be strong when things got tough, patient when things didn’t go as planned and brave when my baby was being poked and prodded. I quickly realized that I was my child’s voice now and I needed to advocate for him 100% of the time.
There is nothing more gratifying than having every doctor tell me all the things my son wouldn’t do and watching him far surpass everyone’s expectations of him, including my own. Jake has shown us what it’s like to work 10x as hard to reach milestones that are easily attainable for children his age. We were told he might never walk and now he’s running circles around us. We were told that we would be lucky if he ever spoke, yet at three years old, he is only one year behind where he should be. He has worked so hard to get to where he is today.
He’s taught us the meaning of looking beyond someone’s disability and loving them unconditionally. He’s taught us to laugh when things get hard and all you want to do is give up and cry. He’s taught my daughters to be kind to those who look different and to empathize with those who were born different.
Yes, life with him is challenging. Our days are filled with appointments and therapy sessions and lots of crying. But they are also filled with accomplishments that we celebrate to the fullest and moments that have us crying with laughter. They are filled with music and lots of dancing.
I don’t know what Jake will be like in 5, 10 or 15 years. I don’t know if he will ever go to college, if he will get married or have kids. And while I oftentimes find myself worrying about the future that everyone around him will one day have, I choose to focus on the now because right in front of me is the strongest 3 year old I know and my life would never be the same without him.
Jordan Harouche, Chai Lifeline New York
I was always close with my Mom, but throughout my sickness, I really came to understand how amazing she is. Her devotion and hard work to take care of me are unparalleled. Throughout treatment, she would try as hard as possible to make things comfortable for me. When I was feverish and hot, she would sit by my bedside with a damp towel for my forehead. When I was in chemotherapy she would give me foot massages to distract me. At one point I couldn’t stomach anything more than plain pasta, and so every night she cooked plain pasta.
It wasn’t just the physical things, but the emotional ones as well. Throughout my journey, I tried really hard to stay strong and positive for those around me. Being sick is scary, but so is caring about someone who is. However my mom could just read my mind, whenever something was wrong, even if I was smiling, all it would take was one look at my face and she would know. In the middle of everything, she was always there as a pillar of strength. She was the one person I could feel everything in front of, in fact, she and my grandmother were the only people I could cry in front of the entire time I was in treatment.
Throughout everything, she still managed to impart her values. I’ll never forget to say thank you to a nurse after she explained how hard their jobs must be and engrained that gratitude within me.
My mother is an incredibly sweet, giving, and most of all, hard worker. She does everything to its max; there are no half measures with her. In our house there is no such thing as heating up leftovers, my mom turns it into a gourmet meal, she doesn’t just “make” holidays, she creates feasts and hosts hordes of people. She doesn’t just work, she (and my dad) created a company. She wasn’t just there for me during my treatment, she was the driving force behind it. My mother is a constant source of inspiration to me, and I am grateful and proud to be her son.
Avital Weissman, Chai Lifeline New York
With the birth of each of my children, I felt overjoyed and excited to be a mother! I also felt pressure to be what others all thought I should be as a mother. It was hard for me to be true to myself as to what kind of mother I wanted to be.
That all changed a few months after my youngest child was born. His four-year-old brother was diagnosed with leukemia and our world turned upside down. I thought I had done something wrong. But the whole time all I knew was that I had to be his mother, his biggest advocate, and his best friend.
Hudy is the happiest and most loving kid. Although he knew he was sick, he took it like a person beyond his four young years. Encouraged by his oncologist, he was always smiling and joking. Although it was hard, I was by his side every moment. The baby came with us to every appointment, every hospital stay. Hudy, the baby, and I would spend three days a week at the oncologist’s office. Fevers meant ER visits at all hours of the night or day, and more hospital stays. A transplant meant changing hospitals, and another nearly eight weeks in the hospital. This became our new reality.
Hudy and the baby developed a really close relationship even at that age and are best friends to this day. They speak a language only the two of them understand and still read each other’s thoughts. Hudy taught me more about being a mother than I could ever have imagined. Hudy taught me how to smile even during the worst of times. Even an hour before Shabbat at the oncologist’s office, after receiving both a blood transfusion and a platelet transfusion and 104 fever spikes, Hudy was telling the doctor jokes. During a terrible allergic reaction (also, right before Shabbat) to a new medication in the hospital, all he wanted was for me to read his stories and build his Legos with him.
Even today, Hudy (now he goes by Yehuda) who is Baruch Hashem healthy and nearly six years post-transplant and cancer-free, still has a personality that everyone can learn from. He doesn’t dwell on the little things. He is funny. He teaches me every day what it means to be a mother. It is hard, but with a child like Hudy, you never take a moment for granted. With a child like Hudy, you learn to smile through it all.
Samantha Kayne, Chai Lifeline West Coast
When I was first diagnosed with cancer, my world stopped. School, friends, hobbies, everything now revolved around fighting for my life. Throughout it all, my mom was there, fighting for me, not just in the hospital and treatment but outside to make sure that I was living life to its fullest.
She made sure I had tickets to hockey games (at one point we were going to one a month) and that I got to go to plays and events.
Her devotion means the world to me, in order to take care of me, she even quit her job so she could be there every moment. Throughout it all, I got to see what real love is. I saw her devotion not just to my recovery but to who I was as a person. I love my mom more than ever and am so grateful for everything she has done for me.
Jayne Wexler, Chai Lifeline New York
Justice was diagnosed with Leukemia at nine months old, had a bone marrow transplant at age three, open heart surgery at 14, and recently a heart transplant due to his chemo-induced cardiomyopathy. My son has been through so much in his 17 years. Living with illness has shaped his character and made him empathetic. A memory comes to mind when Justice was in first grade. When a boy in his class had to be fed through a feeding tube, Justice put his arm around him, patted him on the shoulder, and told him everything would be okay. Justice’s caring nature, sense of humor, affectionate demeanor, and warmth help me through each day and make me a proud mom.
Motherhood hasn’t turned out as I expected. Instead of bonding with other moms of toddlers at the playground, I met them by the coffee machine in the hospital. After-school activities weren’t soccer and art class; instead we schlepped to PT, OT, and clinic appointments. Parenting techniques, consistency and discipline were impossible to maintain… and still are. On the other hand, missing out on so many normal childhood experiences has led me to appreciate the small moments we share. Taking a walk through the woods or cooking a meal together makes me grateful for how far we have come.
Sarrette Mcintosh, Chai Lifeline West Coast
My son Joe was diagnosed at 15 months old–it was life-shaking. When a child that young is sick, it’s even more of a responsibility. You need to be the voice of someone who cannot speak. It means around-the-clock advocacy and care. At some point, you simply forget about yourself, because your entire existence in those moments is to keep your child alive. Thank G-d Joe is alive and well today, not just because of incredible doctors and treatments, but because of my own mother.
My mom dropped everything so she could be there for me so I could be there for Joe. She was there when we flew to New York (even confronting her lifelong fear of flying), she was there during all the late nights, early mornings, medical meetings and treatments. Throughout it all she took care of me, she made sure I was eating, sleeping, that we went out after a long day at the hospital to do something for ourselves (even if it was just walking through a small street fair).
In hindsight, watching my mom swing into action the moment I needed her, had a large impact on me. While I always knew that she would always be there for me, it’s something completely different to experience. You get to feel that love and sacrifice in a different way.”
