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.
Situation
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?
Response
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!
Cheryl Clifton
San Diego, CA USA
Response
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!
Salli Gamez
Portage Ml USA
Response
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.
Maggie Orr
Newtonville MA USA
Response
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.
Gwen Gotsch
Oak Park IL USA
Response
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.
Karen Coomber
Auburn MA USA
Last updated Wednesday, October 11, 2006 by njb.
Page last edited Sun Oct 14 09:30:36 UTC 2007.
