This was something that I wrote a number of years ago. It was published in Spirit! Magazine, not under my name, to protect my children’s privacy. I am including it here, since I often find it helpful for new parents of special needs children. I hope that it will be a service too for others who may be reading it now.
I am a grateful mother of twin girls, both of whom have special needs, and one of whom is multiply handicapped. Caring for any children is a challenge. Caring for special needs children is a special challenge. So many people say to me: “I don’t know how you do it. I never could”. And, it is an odd feeling to know that people look at me and count their blessings that they are not in my situation. However, I count my blessings too. Every day I thank H”S (G’d) for making me a mother, and giving me the opportunity to improve my character and practice unconditional giving.
The road to parenthood was a difficult one for us. Our first baby died, a week after she was born. I remember when she was in a coma, and things were not looking good. A well-meaning friend said to me: “I prayed for your baby to die. If she would have lived, she would have been profoundly disabled”. I remember thinking – I wanted that baby any way I could have her. People do not have to be perfect to have a right to be here. In retrospect, I can say that was a test. Having had a child and lost her, I feel very grateful for the children that H”S has given me.
I remember my reaction when the doctor told me that one of the babies had the marker for Down’s Syndrome. Did I want to consider amniocentesis and selective termination? “No” I told her. I felt that you cannot second guess what H”S (G’d) has planned for you in this world. We are not in control. Everything that happens in this world happens for a reason. We all have choices: either we learn the lessons that we are meant to learn in order to earn our place in Olam Habah (the World to Come); or, when we leave this world, we will have lost the opportunity to fulfill our mission.
Yaffa, my daughter with Down’s Syndrome was born with a host of medical problems. She had a heart defect that required open-heart surgery when she was 2 months old. She was failure to thrive and was on a NG feeding tube and then a G-tube until September, 2008. On top of that, we discovered that she is significantly hearing impaired. Our life became a series of hospital stays, medical appointments, and therapy sessions.
One friend, to comfort me, said “you will have nachas (joy) from your daughter, you will just have different nachas (joy)”. The lessons that children with Down’s Syndrome have to teach us are important lessons for us all. On paper, Yaffa has so much less than others. Yet, she wakes up each day with a smile on her face, and a joy at seeing the ones she loves. Every day, she signs to me: ‘Mommy, I am happy today.” And, when she is not happy, she signs “excited” instead. How many of us, with so much more, live with such simple joy? We can all learn from such people, if only to learn the gift of gratitude for what we do have.
When we call these children special, there is a reason. With my children, I know that I really do not have to worry about them. They are truly under H”S’s special care. H”S loves all of us, and gives all of us what we need. However, with my daughter, she is surrounded by tremendous hashgachas pratis (divine providence). All I have to do is wait for the miracle, and miracles happen all the time. H”S truly takes care of them.
Although my children are different from other children, I believe that their neshamas (souls) are special and they are more closely connected to H”S. When my daughters were little, I used to play a game with them. I would sing “Mommy has a hat, what do you think of that, Mommy has a hat, what do you think of that? She takes off her hat, and gives her hat to Yaffa….” and the hat would be passed to Yaffa, and go around the room. Don’t ask me why, but, when I would put the hat on her, I wouldn’t see a hat, I would see a schrimel. To me, Yaffa looked like a Hasidic rebbi who might of passed away in the Holocaust. Now, when I look at my daughter—I see my daughter. However, I still believe that her soul is special. H”S placed her neshamah in her body because she has less that she needs to accomplish in this world, in order to achieve her lofty status in the World to Come.
Sometimes, my other daughter, Raizel, will say things that are so simple, and yet so profound. After Passover this year, Raizel dropped a bottle of raspberry syrup. The bottle shattered all over the floor. Syrup was everywhere. Raizel said to me: ”H”S wanted me to brake the bottle, because he wanted me to daven (pray) to him.”
Recently, Yaffa fell down and cut her forehead. For 11/2 hours, every time I would stop the bleeding, Yaffa would rub it, and make it bleed again. Any band-aid that I was able to put on, was promptly ripped off. I was distraught. Raizel began to daven: “Please H”S, please, bless my sister with a refuah shelemah (speedy recovery)”. Within 10 minutes, Yaffa calmed down, let me stop the bleeding, and put a band-aid on. I felt as if H”S heard her prayers.
Often, I say to myself—“this is a world of shekar (lies). Things are not as they appear. When the time comes for me to leave this world, and enter the Olam HaEmes (World of Truth) I believe that only then will I have the pure clarity of vision to fully appreciate the specialness of our children.
Having special needs children is a process of acceptance, developing one’s relationship with H”S and growing in emunah (faith) and b’tachon (trust in G’d). When the girls were first born, I focused on the fact that my other daughter, Raizel, was at least normal. I worried about their relationship, and whether or not my typical child would feel burdened by her special needs sister. The differences between the 2 seemed as if it was growing wider each day. However, at 18 months, I began to notice developmental delays. We had her evaluated. Much to everyone’s surprise, she qualified for early intervention services too. Now, we have 2 children with special needs, both with completely different issues.
Raizel looks normal, and her disability is invisible. I forget sometimes her limitations. It is a constant exercise of acceptance and patience when I am confronted by them.
Every day, I ask H”S that He should guide us to care for these 2 special children, and direct us to what is best for them. I know that I cannot do it alone. I can only do it with His help. I try my best to maximize their potential and accept their limitations. I trust that He is guiding us and that the wisdom and beauty of the gifts that He has given us will be revealed in His time.
Finally, coping with the challenge of children with special needs is a journey. One can only try and do the best one can, moment by moment. Then, be flexible and adjust to any changes that need to be made. H”S is in charge and everything unfolds according to His plan.
Here is one of Raizel’s recent art projects: