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Every day there are families whose dreams of becoming parents
are crushed by prenatal genetic testing. Every family wants to have a baby who
is physically and mentally healthy and happy, but sometimes life sends them on a
This morning, at the request of her doula, I spoke with a 31-year-old
woman whose unborn baby had just been diagnosed with Down syndrome. She didn't
seem overwhelmed by fears or doubts, at least, not by the sound of her voice.
She talked about the testing and explained that it had been revealed over
several tests and now it's nearly confirmed. As she hadn't spoken with anyone
parenting a child with Down, she said she was looking forward to hearing what
I'd have to share.
I suggested she start by just talking or asking me questions—I
didn't want to project my experience on her, or color her individual sacred
journey. She shared many concerns, and we spoke in small details about most of
them, but her greatest concern was about the unique and separate experiences
she and her husband were having regarding the diagnosis. While she seemed fully
on board, her husband was having a difficult time accepting the situation and
what it will mean in the long run for their family and their child.
After our conversation, I thought I'd share some suggestions of
what to do (and what not to do) if you get an unexpected genetic diagnosis
during your pregnancy:
1. Do not rush
into any decisions
No parents start a pregnancy expecting a genetic test
to come back with some life-changing information. But if it does, do your best
to take your time dealing with your feelings, fears and choices. Do not rush
yourself to make any decisions.
I told her was that if she was willing to parent her child, she must trust that she will become the mother her child needs her to be.
2. Allow your
partner to feel how he or she feels
If you and your partner are having different reactions
to the diagnosis, or are having different feelings about what to do about it, know
that that is OK. Give each of you the time needed to process feelings and information.
Getting a genetic diagnosis is difficult, confusing and scary. It is our tendency to assign blame and to look for meaning, however,
there is actually no one to blame and no meaning to be found. Maybe when the
smoke clears, you may discover some personal meaning but blame is never a
factor. These things happen, and that's that.
4. Ask for
Asking for help and support seems simple, but in truth
it's not. Ask for support from people who are supportive. If you have a history
with people who tend to run from challenges or shrink at the sign of the
unknown, they are not your support system. Ask for support from people who
don't scare easily or back down in the face of obstacles.
5. Don't judge
If you feel bad, scared or disconnected from your
child after the diagnosis, don't judge yourself or make yourself wrong for
struggling. It's OK. If you decide to terminate the pregnancy, be sure to
love yourself for making the right decision. There is no shame in your choice,
and you shouldn't feel guilty about doing what you need to do.
This is a subjective recommendation, but I suggest staying
off the Internet and not over-researching the diagnosis and outcomes. If there
is a foundation that represents those with the diagnosis, I do suggest you
reach out to the staff members. For instance, if Down syndrome is the diagnosis,
call your local Down Syndrome Society chapter and speak to someone about
programs or ask to be connected to a family. Do "live" research that will allow
you to touch your humanity rather than browsing through information that could just
scare you. It's always best to see how people
are living with something and being victorious.
My conversation with this young woman ignited all types of
feelings within me. It took everything within me not to cry during our talk
just because I remember how scary it was to be pregnant and anticipating a
child who would have genetic difference. I feel that I'm now a grounded and
courageous parent of child with Down, and I didn't have anyone like that to
speak with. The last thing I told her was that if she was willing to parent her
child, she must trust that she will become the mother her child needs her to
be. Her love for her child will grow her and call her forward to discover
parts of herself she never knew existed.