Thursday, October 4, 2012

31 Letters to the New Mom of a Child with Spina Bifida, Day 2: Making Your Press Statement to Friends and Family

Day 2:  Making your Press Statement to Family and Friends

Dear Momma,
Since finding out that your baby will be born with Spina Bifida, you have probably been bombarded with questions from friends and family members and you are still trying to comprehend the information yourself.  First let me say, it is okay to say, “I don’t want to discuss this right now.”  I basically went into hiding after we found out about our little Jaycie.  I was depressed, grieving and did not feel prepared to answer their questions.  Plus, some people do not have a lot of sense and they have a tendency to ask stupid, insensitive questions. 
I felt like I had to be polite to friends and family and even complete strangers when it came to my daughter’s diagnosis and afterwards I would feel sad and angry at their insensitivity.  I could have controlled the situation simply by having a “Press Statement” prepared and ready to roll off the tongue.  Most of the people truly care about you and your baby they just don’t know how to discuss it with you.  Let them know if they are asking too many questions, or if they are being slightly insensitive.  You know I had people ask me while I was pregnant, if my daughter would be able to walk or not?  To some people that may be a justifiable question, to me it isn’t.  Also, encourage your family and friends to find out all that they can from other sources, that way they are too busy to bother you with a bunch of questions that emotionally you may not want to answer.  On the other hand, some days you may find that sharing your knowledge is empowering; make sure that the one you are imparting the knowledge to is worthy of your time and emotional energy.  To the people that said, “will she be able to walk?”, I stated simply that: “one doctor said no, one doctor said yes, but it is ultimately up to God”.  In fact, the diagnosing doctor was extremely insensitive when we returned for our amniocentisis.  We asked to have a meeting with him after the test so that he could answer some of our questions.  We sat down in an office and he said, “There are different types of Spina Bifida.  Some kids with Spina Bifida can do all kinds of things,”  he said, “some can even play baseball, but that won’t be your daughter.”  WOW!  That hurt.  I refrained from punching him in the face, long enough for my husband to grab my hand.  I hadn’t even raised it yet, but apparently he saw it in my eyes.  With my husband’s firm grasp on my hand I stood up and told the doctor, “I guess we are done here, and by the way, you don’t know what my daughter can do!!  We will not be returning to this office.” And with that we left the clinic and we never did return to his office again.   The point of this letter is, people that love you will understand if you do not want to discuss it at certain times and people that don’t respect that; aren’t worth the emotional energy to explain it any ways. 

Here’s something you are welcome to use as your “Press Statement” on the days that you don’t feel like “chatting” about it: “Our daughter was diagnosed with Spina Bifida at our last appointment.  It is a Neural tube defect that occurs within the first 28 days after conception.  Doctors are not positive what causes Spina Bifida, it is thought to be genetic and they have noticed a link between the condition and a lack of Folic Acid.  Myleomeningocele, ( one form of Spina Bifida) does affect the nerves in the spinal cord, but until she is born and a little older we will not truly know her functioning level.  At this time we are not accepting any questions.”  ;-)

With Love and Prayers,


P.S. If you are a friend or family member then show your concern by saying things like “Do you mind to explain the condition to me?” or say,” I don’t understand what you are going through, but if you want to talk about it, I’m here.” Or even “We are praying for you and the baby.” You will find that by approaching the conversation this way the new Mom will understand your intentions for the conversation.  Please do not say, “What’s wrong with the baby?”  Respect the new parents when they say that they don’t want to discuss it.  It is not that they don’t love and care for you, they are just trying to “wrap” their heads around what is going on and in some cases they are busy trying to put the pieces of their hearts back together, as a family.  Respect it now and they will appreciate you later.

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