When a baby is born without, or only limited sight, it has a major effect on the parents, their family and friends. Parents, family and friends react differently and those outside the family unit often do not know how to react or give support.
The parents may be shocked, feel angry and/or guilty, blame each other, experience fear, helplessness, sadness or they may deny all of these. They will need to be guided through the natural grieving process.
The incidence of divorce in families with disabled children is exceptionally high, partly due to the obvious stressors and pressures of having a disabled child, but also partly because parents may be experiencing the grieving process in unique and individual ways and may be unable to offer each other the love and support they need. Dealing with the grieving process head on will not only help yourself and your child, but also your marriage!
Not everyone goes through the grieving process, and not everyone who does go through it does it in the order described below, nor may they even experience each part of the process. It is an entirely individual experience. This can be particularly difficult for married couples who find themselves on opposite ends of the grieving process.
Denial or disbelief – saying it is not true
- “While I was still in the hospital after Tony was born, the paediatrician told me that he was blind, but it didn’t sink in. I really believed that all I had to do was to get him home and then he would be okay.”
- you may find that your emotional responses to things that would have made you cry, laugh, etc. are all more muted and you might struggle with sleeplessness.
- You may feel withdrawn from the world you usually inhabit and unable to say how you feel. This can put a strain on your relationships, and if you have decided not to confide in anyone about the diagnosis you have been given, they may feel confused, offended, or concerned about your apparently sudden personality change.
- You may simply ignore the issues surrounding your child’s blindness: if you are not addressing things then they can’t be happening.
Anger – being cross with each other and even God
- “At first I was terribly angry and bitter, and I blamed God. I have since learned to adjust to my son’s disabilities. Never will I accept them, but I will continually adjust.”
- Blaming yourself, your partner, your prenatal or post-natal care, your housing conditions, your mother’s “little drink problem,” that spray you used on the cat, all allows you to indulge in a search for a reason that has little to do with informing yourself about your child’s condition and lots to do with a need for a scapegoat.
- The “why me” question can exhaust you looking for answers and often the only answer you are likely to get is “why not you?” “Why did God forsake me?” You may ask, but God did not forsake you — you had a baby with special needs!
- Does it really matter how your baby came by the condition? Will it help if you track down every member of your husbands’ family to prove that it must have “come from his side?”
- Will your baby be blind regardless of How’s and Why’s? The distraction of the anger phase can give you useful time and motivation that you need to let others know what’s happening with your child.
- If you feel you have to say to your family or your neighbours or the postman “My baby is blind because of a genetic issue in my husband’s family” then fine. When you remember saying that next year you may be embarrassed, but at least today the information is out there and you are starting to deal with it—after a fashion!
Bargaining – talking to each other and to other people trying to make sense and coming to agreements
- “I know Simon has delays—I just keep expecting them to go away. I wonder what I have done wrong that he still has these delays.”
- This is the fanciful part of grieving! You may not be sure who you are bargaining with, but very often as parents we come to a position “negotiating with the cosmos.” Are any of these statements familiar to you?:
- ✓ • We are hoping that she’s not so severely affected (by whatever).
- ✓ • The doctors say it is a very mild case.
- ✓ • Scientists are searching for a cure; they are very hopeful.
- ✓ • He’s affected to this degree; we couldn’t have coped if it had been worse.
- This can bring a subtle skewing of your ability to see the facts as they are. If you entrench yourself in the position that you can cope with, say, blindness but not blindness and deafness, are you truly open to seeing your child for who she is?
- Negotiating with an apparently silent deity or universe is a facet of bargaining that can leave you with a profound feeling of isolation but being aware of what you are experiencing and knowing that it is finite often helps.
- Bargaining can often, too, lead to a false feeling of acceptance.
Sadness – feeling sad and depressed
- “After a few tries of going to the shops or to church, I just stopped. I couldn’t stand how people looked at my baby (or at me).”
- Depression also can make an appearance whilst you are coming to terms with your grief. You will be aware that there is far more to dealing well with depression than can be covered here. If you are currently suffering from the effects of depressive illness, GET MEDICAL HELP! That you should deal with it, is paramount.
- You may feel that there is no reason for you to be depressed, you had a child; no-one died. It is reasonable to say, however, that you are grieving for the child you expected to have; no parent starts out thinking “I hope my child will be blind.” That would be ludicrous, so when your child is diagnosed as blind (and everyone hopes fervently for another outcome) there is a kind of bereavement.
- You have every right to grieve: for your hopes, for the trauma you have been through, and for your child and the limitations this condition gives him.
- There is an unexpected positive to be seen in depression, paradoxically, because this is the immediate forerunner of acceptance and means that you have accepted the facts of your child’s condition, at least to some extent (or why else would you be depressed?)
- “From my child, I have learned to love unconditionally. My life has been opened up to include experiences I never would have considered.”
- This will come. You will accept a new reality for yourself and your family. You will come to visualize a practical new way forward, embracing the new reality and accepting the burden of the work that lies ahead.
Because they are scared that the baby may be injured, parents can become overprotective. Therefore, they keep the baby away from their siblings and from friends. Children who can see, will thus avoid the baby who cannot see. Every child, blind or sighted, must go through the usual bumps and knocks and falls and getting into difficult situations that are so very helpful in learning how to survive. Your child is entitled to those experiences which, in many ways, represent the beginnings of his or her learning how to contend with life.