Staying Home Instead:
Special Mothers with Special Needs Babies
From: NEW BEGINNINGS, Vol. 18 No. 2, March-April 2001, pp. 58-60
"Staying Home Instead" is a regular feature of the magazine NEW BEGINNINGS, published bimonthly by La Leche League International. In this column, suggestions are offered by readers of NEW BEGINNINGS to help parents who choose to stay at home with their children. Various points of view are presented. Not all of the information may be pertinent to your family's life-style. This information is general in nature, and not intended to be advice, medical or otherwise.
I fully expected some feelings of isolation after my baby was born and I quit my job. But when my baby was born with a heart problem, all of a sudden I felt really alone. Aside from all the medical issues I had to deal with, there was the emotional pain. It was painful to go to mothers' groups where everyone had babies with normal problems. Their concerns seemed so small compared to mine. They worried about being awakened at night to nurse. I worried about going to the hospital in the middle of the night. It seemed as if no one there had had an experience similar to mine. I love my sweet baby girl and wouldn't trade her for the world, but sometimes I feel like all day every day with her extraordinary needs is just too much. What do other mothers of special needs children do to avoid feeling alone and overwhelmed?
Having a baby with life-threatening complications really puts life in a different perspective. My first son was born with a complex congenital heart defect. I remember vividly my feelings at the time. Sometimes I just wanted to shout, "Who cares about that?" How could I find the emotional strength to pump after giving my baby over to strangers so they could open his little chest, not knowing if I would see him alive again? What about all those wires and tubes? What about nursing my baby when he was in pain? These are the issues I grappled with, mostly alone because I couldn't find anyone with whom I could truly relate. I prayed a lot and relied on family for emotional and practical support, but I still feel I had to bear the "mother pain" alone.
Even though I often had a very different perspective and different concerns, I still found other mothers to be a tremendous support. Just listening to them voice some of the typical concerns of parenting helped. Often, things I thought I worried about because of my son's medical problems were just normal new mother worries. Knowing other mothers had many of the same fears and worries helped me feel a little more normal. Also, hearing all the benefits of breastfeeding for every baby kept me motivated to continue nursing even when it was complicated. My baby really needed the benefits of breastfeeding! It was the one thing I could actively do to help him. That really empowered me. He'll be five years old this spring. He is very bright with a strong spirit-real joy in our lives!
San Diego, CA USA
I am the parent of five children; my fourth child has autism. While I do not have the problem of going to the hospital with him, I do sometimes envy mothers of average children who sail effortlessly through their various developmental milestones. The thing that has helped me the most has been to join online support groups for my son's disability. Websites like yahoogroups.com offer support groups for all kinds of situations. You can probably find one that suits your needs and make friends on it. The best part for me is that whatever times I have available, someone is likely to be there for me. I have email friends whose children have autism who live in England, New Zealand, Canada, and Australia. We can share our hopes and concerns, and discuss our common problems. I bet somewhere there is a group that would meet your needs and if there isn't, then consider starting one!
Portage Ml USA
My heart goes out to you. I fully understand how hard it is to feel alone with a baby who is different fiom other babies. My oldest child has special needs, and her infancy and toddlerhood were very painful for me. I often felt very isolated, especially when I was with mothers whose babies were developing typically. Over the years, I have found it most heIpful to talk to other women whose babies have some sort of medical problem or developmental disability. There's a sense of fellowship there that I haven't found anywhere else. Perhaps the hospital social worker or the nurses who care for your baby can help you find other mothers who have babies with similar issues. Many mothers find support groups helpful. You might find one at your baby's hospital or the parent organization that corresponds to your babys diagnosis. Again, the social worker or nurses should be able to put you in touch with one. If your baby is in an early intervention program (a program for babies and toddlers who are at risk of developmental delay), you may find parent support and networking there. I urge you to reach out and find another mother in a similar situation to talk with. It makes a world of difference. All best wishes and a hug to you.
Newtonville MA USA
My second child was born with Down syndrome and a heart problem. I remember hesitating to tell people about my daughter's problems because it seemed such a lot of bad news to relay to them, especially to other mothers in my La Leche League Group. But this was the way things were, and I found that talking openly about it helped both others and myself Talking about my concerns with other mothers was a whole lot better than just rehearsing them over and over in my brain. I tried not to go on for too long and to be hopeful in what I said, and I answered questions about my babys health problems patiently. I found that accepting others' natural concern for me and for my baby, though not always easy, made my worries more bearable.
It was sometimes hard to be around other babies who were about the same age as my daughter. I made a conscious effort not to compare her to others and not to compare our situations. Doing so only left me feeling sorry for myself instead, I focused on things I had in common with other mothers-not getting enough sleep, diapering woes, how babies all have very different personalities. While the problems I was facing were of a different magnitude than those faced by mothers of normal babies, the problems still fell into the same categories: Is my baby healthy, growing and developing well? Am I a good mother? There was common ground for discussion.
It is also enormously helpful to find a support group or at least other families who have experienced the sort of difficulties you are facing with your daughter. Perhaps the heart specialist who is caring for your daughter or someone on the hospital staff could put you in touch with another mother who has dealt with similar issues.
Being home all day with a tiny infant is difficult for most women, especially first-time mothers who may not have anticipated what these early months are really like. Do what you need to do to take care of yourself physically, emotionally, and spiritually. While,you may feel that your tiny, delicate daughter needs you every single minute, you may need a break from time to time. Encourage your husband to get involved in your babys care, as well as close friends and family members. With someone you trust caring for your daughter, yoteu be able to get out and take a walk or just get away for an hour or two. Do something you love to do, that will take your mind off your problems. Adjusting to being at home with a baby is hard, even under-the best of circumstances. Reassure yourself that you are doing the best you can in a
difficult situation, and that things will get better. Worry only about what you need to worry about today, and spend lots of time loving your baby. Things will get better-sooner rather than later.
Oak Park IL USA
As the mother of an 18-month-old daughter with Spina Bifida, I offer you some of my thoughts on being the mother of a special needs child.
First, you may need to work through a period of grieving. You are not mourning your daughter, whom I'm sure you feel lucky to have, but you maybe mourning the child you didn't have. The "perfect" child, the one you were "expecting." It seemed to me after my daughter was born that I saw these perfect babies everywhere and I struggled with feelings of jealousy.
But in time, I came to see that my playgroup and LLL meetings could serve as a forum for me to see my child as a "normal" baby. After all, I was also dealing with sleep deprivation, cracked nipples, and a toddler. While I am very willing to discuss my daughter's medical issues, I see now that she is more than any medical diagnosis. She is Hannah, a ull human being with unlimited potential. So I tried to focus more on the regular baby concerns I had when attending such groups.
By attending such groups, I made some new friends who are supportive and concerned about my daughter and me. I also came to see there are a lot more special needs children than I previously thought. Some special needs are obvious to the casual observer, and some are not. And I am now able to offer a hug or a word of encouragement to other new mothers of special chddren.
I also urge you to seek out any assistance your community offers. Perhaps this is something you can discuss with your baby's health care provider or a social worker. You may find a playgroup for special needs children.
I urge you to stay with your mothers' groups, especially LLL. You may not recognize how difficult this time is until you are past it, and allowing yourself to become isolated can make things more difficult. In time, you will make peace with your daughter's difficulties, and be able once more to smile at the "perfect" babies.
Auburn MA USA