I am writing this article in the recovery room of the pediatric surgery unit at LIJ Medical Center, as I await a room placement. My son, Shaya, has just undergone minor surgery. Though, baruch Hashem, all went well, the doctor feels that he should be kept for observation overnight.
As I watch the other children and their parents around me, I am given the time and space to reflect. Every morning we say, “Elokai neshamah sheNasata bi — Hashem, You have placed this soul within me.” We know that Hashem chose to place each child’s neshamah in his body and prescribed for him a future together with a specific set of parents.
Yet it is not the parents alone who struggle with the test of caring for a special needs child. The child’s siblings are tested in their role, as well.
A very sweet and innocent child once said to me, “Rebbetzin Feiner, I know why Hashem didn’t give you any other children. It’s because Shaya needs so much special care. But when he gets better, Hashem will give you more children.”
This child’s purity highlights a complex situation that is often so challenging. Who is caring for the children of the woman whose child is in the next bed? There are another four at home, and the child who is here will be hospitalized for at least another three days. While I wonder how I could possibly attend to another child with the overwhelming amount of emotional energy that my son’s needs require of me, I am confident that if, halevai, He would give me more, I could handle it.
Yet I have seen many mothers of one or two multiply handicapped children who successfully attend to many other healthy children. How do parents succeed in juggling the needs of all their children when one child’s weight is so much heavier?
Although I cannot rely on any personal experience to answer this question, I can offer what I have learned from others’ life experience and hope that what I have observed will be helpful to others.
It’s All about Focus
The value of time spent with others is not assessed by the quantity of that time but rather by its quality. A parent can be in the same house as a child all day and not have spent any quality time with her at all. On the other hand, one hour can be so very precious when the child knows that the parent’s focus is exclusively on him or her.
The infrastructure of Klal Yisrael teaches us that personal value is not based on shevet, status, or gender. Similarly, children must be shown that though one sibling may command more attention from their parents, the extra time spent with that child never detracts from the value of their other children.
It is normal for children to feel resentment and frustration, and parents must keep watch for times when these feelings begin to display themselves in unhealthy ways. If they can, the parents should try to find a special activity that can uplift that child. If the needs of a special child are so overwhelming that parents lack the emotional resources to provide for the emotional needs of their healthy children, it falls to family and friends to be aware and pitch in. Often a “big brother” or “big sister” is the best outlet for such a child and can help fill the need for parental attention, especially during a crisis.
Nothing replaces the love, care, and attention that children crave and need from parents, yet families faced with the challenge of raising healthy children along with a special needs child often merit extra siyata d’Shmaya with their healthy children. When meeting these siblings, both as children and later as adults, we commonly find them to be kind and giving individuals whose values and middos reflect the benefits of having been raised alongside a special needs child.
In It Together
Another point to keep in mind is that prior to Hashem matching the special needs child to his or her parents, He matched those parents to each other. Thus, the Hashgachah is even more specific in this relationship: first, vis-à-vis the parents and the child, and second, vis-à-vis the parents with each other regarding how they will raise the child.
Having a special needs child can be a tremendous stress on shalom bayis. Both parents will face their special needs child from their own perspective, with differing amounts of frustration and disappointment. Unfortunately, sometimes one parent accepts the child lovingly with his or her differences, while the other remains in denial or, alternatively, persists in pushing for every possible medical and therapeutic intervention that could possibly enable the child to progress.
When a couple has a child, the spiritual unity they have reached becomes actualized in their child. Neither one is more or less of a parent to the child. Any decision regarding the child’s future must be shared. Any division of care must be based on a unified assessment of how they can best care for their child. Often, much of the load lies on the mother. It is important that both parents recognize their shared responsibility, and if one of them is carrying more of the burden, the other must express the requisite appreciation.
Having a rav to approach for guidance in such a case, as in any other, is imperative. If the aforementioned assessments are skipped and the responsibility ends up skewed, it can become a tremendous source of resentment. Turning to an objective person for advice is invaluable. The Torah figure can also guide parents in realizing what is realistic and necessary hishtadlus for their child’s progress and what is not.
Spouses must keep lines of communication open and ensure that their respect for and commitment to one another remains strong. At times professional intervention can be helpful, but the bedrock of these efforts is remaining focused on the basics of shalom bayis.
When my son was five months old, one of my teachers taught me a great shalom bayis lesson. My son was then hospitalized at ALYN in Yerushalayim, and his situation was relatively stable. My teacher arranged for her daughters to stay with him for two days and persuaded me to spend a Shabbos alone with my husband.
Up until then, we had been spending every Shabbos since his birth in the hospital. Sometimes we slept at home, but we always walked for almost an hour over the hills of Yerushayaim to be with our son on Shabbos day. I learned early on that to be a good mother to my son I needed to take care of myself, yet my teacher taught me that to be good parents, we needed to take care of our marriage. We spent a rejuvenating Shabbos in Tiveria, and I am forever grateful to my teacher and her family for their help!
Parents can only be the stable, unified force that their children need when they protect and continue to cultivate their unity, not as father and mother, but as husband and wife. Time must be taken from their busy schedules on a regular basis to be together. It need not be on Shabbos, but it must be more than a fleeting ten-minute supper or the five minutes before one of them dozes off. Every child benefits from the security that comes from having parents who personify ahavah and rei’us, love and friendship — not only for their children but also for each other.
Husbands and wives are the parents of the children that the Creator blessed them with. Brothers and sisters are the siblings of the child who was placed by Hashem into their family unit. Every family is a microcosm of the family we call Klal Yisrael. Our “Parent” is the Ribono shel Olam — He cares for us and attends to us as both Father and Mother. He loves every one of us, and each of His children is so very precious in His Eyes. He loves us for who we are, despite our faults or disabilities in serving Him. He is always hopeful and confident that we will improve and return to Him. When we do return, we are promised that, just as when we stood at Har Sinai, once again there will be no infirmity or disability in Klal Yisrael — may it happen speedily in our days!
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