FAMILY PLANNING WITH GENETIC DIFFERENCES

FAMILY PLANNING WITH GENETIC DIFFERENCES

It was almost a year ago when I first shared my unexpected journey into motherhood. As was true of those first few months, my life as a special needs parent continues to be full of surprises.

My future plan always included multiple children, all of which would be two years apart. Naturally, after celebrating our daughter’s first birthday, thoughts of number two start creeping in. Is it really time to start thinking about another pooping machine that keeps us up all night? If only it were that simple … Unfortunately, when your child has been diagnosed with a rare genetic disorder, the idea of more children becomes a lot more complicated.

With my first pregnancy, we did not pursue any screening or tests to detect chromosomal abnormalities or disorders. Not only would it not have changed our course for the pregnancy, but I think deep down I also believed, “that could never happen to me.”

Now the question becomes, “could we raise another special needs child?” Except it’s never that easy, is it? With that question comes guilt, confusion, anxiety, fear, etc.

If the answer is “no,” that means that if I had another child just like my daughter, I wouldn’t want her, right? Throughout my life, I somehow developed the belief that parents have unconditional love for their children and that means they don’t want to change a thing about them. Guilt used to (and sometimes still does) consume me on tough days when I want to wish away my daughter’s disabilities. Parents aren’t supposed to want to change their children.

It has taken me a long time to accept my feelings and I have realized it is okay to wish things were different for her. Would I change my daughter if I could? Absolutely! Does that mean I don’t love her unconditionally? Not a bit! I love her for who she is more and more every day. But it doesn’t change the fact that I would do anything to take away her daily struggles.

So when I ask myself if we could (or want to) raise another special needs child, the question becomes, could I watch another child struggle throughout his/her life like my daughter? Could I have another baby whisked away in the delivery room to spend countless days in the NICU? Could I watch another child get wheeled back to an OR countless times during his/her life? Could I watch two of my children struggle with daily tasks like eating, breathing, walking, and talking?

Even further, could we afford to raise another special needs child? Would our marriage survive the trials of raising another special needs child? To what lengths are we willing to go to ensure a healthy child? How will we ever decide what the best course of action for our family will be?

This time around, words (or acronyms) that I never considered or heard of have become common topics of conversation at our house – maternal fetal medicine (MFM), amniocentesis, termination, genetic counseling, chorionic villus sampling (CVS), donors, preimplantation genetic diagnosis (PGD), procedural risks, level 2 ultrasound. Weighing ALL these options is completely overwhelming!

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In our minds, we just survived the most emotionally draining and physically exhausting year imaginable. Could we sign up to do it all over again, but this time with a special needs toddler at home?

I don’t have the answers to these questions and unfortunately, no one will make these decisions for me (or so I’ve been told)! With the judgment that exists in our current society, it sometimes feels like all of the options are “wrong” in one way or another.

But I remind myself daily that the right decision is the one that is best for our family (and no one else) … and I HOPE I can accept whatever the future holds for us!

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