Yesterday I was riding a high as I got to share my good news…I’ve accepted a new position as a volunteer recruiter for the YWCA Court Appointed Special Advocate program! I will be stepping away from direct service with survivors of domestic violence after four years at the Domestic Violence Prosecution Center. My efforts will now be channeled into recruiting volunteers to become CASAs or guardian ad litems for foster youth. This position has some work from home benefits, is fewer hours, has hours that allow either myself or my husband to be at home with our kids and also allows me to step away from the exposure to vicarious trauma. Overall it is a great fit for both myself and my family as we transition from three to four.
Yet I came crashing down later in the day when I learned that both myself and my husband are carriers for cystic fibrosis. What that means is that our baby girl has a 25% chance of being diagnosed with the illness herself. Although this isn’t a definite diagnosis for our daughter the only way we can know with certainty what her future holds is with an amniocentesis. This is not something we’re willing to do for a number of reasons. One, it poses additional risks to Elli. Two, it wouldn’t change the trajectory of our pregnancy. And three, the diagnosis, although devastating wouldn’t create an immediate change for her care when we take her home from the hospital. So with that we will wait until she decides to make her debut and we hear the newborn screening results.
I held it together until hearing in greater detail what that could mean for her life – feeding tubes, growth deficiencies, frequent lung infections, routine appointments and treatments all with the goal of prolonging her lung function until the day arrives she would need a lung transplant. The reality of it all left me broken and sobbing. My rainbow baby is supposed to be my source of light and right now all I can see are those dark clouds looming over her future.
Yet it goes beyond concern for our unborn daughter. We didn’t elect to have genetic testing done with our now three year old son. Part of that was due to our own misunderstanding about what it entailed. We were also with a different provider and insurance. As to our knowledge he is a healthy and vivacious little boy full of life. He shows no markers for CF and his pediatrician did give me some reassurance that she would be surprised if his test results came back positive. However, he is a pint sized little guy, much like his mama. So for that reason she believes it’s best to ensure CF isn’t manifesting itself with a growth deficiency in him. So now we wait to be referred to a local children’s hospital and hope for the best results for both of our children.
Hoping that our prayers are answered and we are gifted with two healthy children that doesn’t alleviate all of our concerns. This will have an impact on our children’s likelihood of passing on CF to their own children once that day comes. So the day will come that we are reminded of these feelings and are brought back to this moment of concern and dread while we wait to hear if our grandchildren have escaped a CF diagnosis.
So if you’re a praying person I ask that you lift us up. I’m seeking comfort, acceptance and peace in whatever outcomes there may be. And if you’re not I ask for positive energy and well meaning thoughts. This is part of the journey to meet our sweet Elli Reese and no matter what we’ll celebrate her and these transitions we’ve been gifted as a family.
#rainbowbaby #rainbowmama #newbeginnings #hillsandvalleys #godswill #opendoors #newpossibilities #giveittogod #hiswill #hisplan #trustinginhim #pregnancy #girlmom #20weeksprego #halfwaythere #cf #honestparenting #childhooddiagnosis #motherhoodunfiltered #realmotherhood