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Family and friends can be a very important source of comfort
and strength during a pregnancy diagnosed with twin to twin
transfusion syndrome. It is often difficult, however, to
have time to devote yourself to explaining the disease to
them. If you would like a packet mailed to anyone in your
family, for example, the babies’ grandparents or close
friends, please call, or have them call the Foundation at
440-899-8887 and we will mail this to them and talk with
them on the phone. If you are in the hospital, you may also
call toll-free at 800-815-9211.
Family and friends need
to know that twin to twin transfusion syndrome is not hereditary
or genetic. The babies are completely normal and healthy
babies, but they are at risk for problems because of the
disease in their shared placenta. Twin to twin transfusion
syndrome is completely random and it is not something that
was caused by something the parents did or did not do. It
is also not something that the babies are doing to each
other. Everyone is an innocent bystander. These are often
first concerns of families. Sometimes family and friends
say terrible things to parents not realizing they are ultimately
blaming them for the problem. Going over these basic facts
listed above can be helpful in ending hurtful comments.
Family and friends can
best give support to the diagnosed parents by letting them
know that they and their babies are loved and are being
prayed for (look at the section on ‘quotes’).
Sometimes nothing needs to be said. Just having them hold
the parent's hand and letting them cry, or letting them
be hopeful and encouraged, is more meaningful then words
could ever be. Friends and family can help simply by explaining
to the parents that they don’t understand completely
what they are going through or what they need. Parents can
tell them how they can help by saying, “If you love
me, then please trust me, that this is what I need from
you.” This will help make family and friends feel
that the door is open for their involvement and they will
be more then happy to do what the parents have said.
Ways that family and friends
can help diagnosed parents include: helping with other children,
providing meals and housecleaning, driving to appointments,
helping shop for the babies, bringing magazines to read
while the mom is on bedrest, making a cooler of food by
the mom's bedside, making gifts for the babies, buying things
to make for the babies like needlepoint projects, searching
the Internet for more information, bringing books from the
library, and letting the parents know their babies are very
important and worth fighting for.
When we go through difficult
times in our lives, we realize what life is truly about.
It is about our family and friends. It is about our children
and being parents to them and loving them. Encourage the
parents to try to surround themselves with people who bring
comfort and peace. Have them separate from those who add
stress, who are not willing to try to understand, and who
cause emotional pain. Those that truly love the parents
and are close with them will always be there for them no
matter what. We always remind them that God is with them.
They are never alone.
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