This year has marked a lot of “firsts” for my family. It is the first year without with our son Noah Mathew Leos, who passed away at the age of 5 ½ years on November of 2015, after a valiant battle with B1 Variant Tay-Sachs Disease. We have been blessed to be the parents of three remarkable children: Antonio, Noah and Marina. Our middle child Noah was affected by the rare genetic disorder that progressively destroys nerve cells.
My husband Hector and I have been married for 16 years and love celebrating special occasions, but this year the holidays have been heavily bittersweet. This Father’s Day will be Hector’s first as a bereaved father.
We have been pregnant five times, and with three children, the familiarity of heart ache that comes with losing a child is tragic every single time. Noah’s loss has been much more grueling because of Tay-Sachs cruel disease process.
Immediately, most friends and people we encounter think of my grieving process and will ask how I am holding up, but bereavement tends to be more taboo among grieving dads.
Father’s “fix” things: the flat tire on the bike, the never ending honey-do list, they work tirelessly to provide for their families and sometimes that leaves them with less family time. For fathers who have experienced miscarriage, loss of a child, or have a child affected by illness, there is no immediate fix, and that makes the challenge even harder.
Hector would come home after a grueling day at work and share in the demands of having a medically complex child at home long into the late of night. Hector is quite handy, he loves solving problems, repairing multi-million technical equipment at work. He loves analyzing schematics, but for a disease like Tay-Sachs, there isn’t a fix. There is no cure. I think many fathers can relate in not being able to make something better, not for lack of trying but because some problems don’t have solutions. For any father who has ever faced such dilemma, the sacrifices you make don’t go unnoticed.
For the father who comforts the saddened wife after another negative pregnancy test, for the father heartbroken over the loss of miscarriage, for the father who has lost a child, and for the father fighting alongside your child affected by illness- you are commended. There is brotherhood in fatherhood, and for those who don’t have an immediate “fix” for life’s clamors- this is an even more special band of brothers.
Those of you who cry alongside your wife, who are strong for your wife, who hold her hand and remain brave despite not feeling that way inside, you are our hero! When your heart is wilting inside and you feel you can’t allow anyone to see you in pain, you remain steadfast in the hard times. You are our hero! You will always be our hero, and we celebrate with you today and especially on Father’s Day.
In honor of Father’s Day, we are sharing stories of amazing local dads.
Zoe is a SAHM of mother of 3 amazing kids. She and her husband are recently bereaved after the loss of their son Noah, in November of last year. Zoe enjoys writing and is working on a palliative care initiative in the Corpus Christi community.