A message from Valarie, baby Delila’s mom
One year ago – Mother’s Day 2020, I was two and a half months away from meeting my third and final baby girl. 2020 was a tough year for everyone with the COVID pandemic and living our new normal, but it was about to hit a peak for me when I got news just a month later I would have never fathomed. “It appears your baby has a heart defect from the ultrasound we did today. You will be referred to a maternal-fetal medicine specialist for the rest of your pregnancy. I am so, so sorry”. With tears welling in my eyes, I left the doctor’s office with my world crashing down on me. “How could this be?” I thought. These are the kinds of things you read and hear about, but never think that it will be “me” and “my family”. Read more about baby Delila’s diagnosis.
Fast forward to now, a year later, my world being sweet little Delila’s mom has been nothing short of a delightful, chaotic, blessing. At nine months old and 13 pounds, my petite little Alagille warrior is thriving, and full of smiles that melt my worries away even during the most stressful moments. Doctors had warned us that children with Alagille may be delayed in their development depending on the severity, and while it is challenging not to compare her progress to what my older daughters were doing by this age, I remind myself that in due time she will get there and conquer those milestones. Within the past few weeks, she has begun to sit up by herself and to my excitement, has started saying “mama” as her first word – needless to say, I am a super proud mom!
Delila’s diagnosis has challenged me and pushed me beyond limits I never could have even imagined. In her first month of life and with all the unknowns of her presumed Alagille syndrome diagnosis I would constantly think to myself, “this by far is the hardest thing I have ever had to deal with in my life”. During each poke and prod from regular blood draws, ultrasounds, echocardiograms, EKGs, and checkups, Delila’s strength and bravery inspire me to be strong and brave in the most challenging moments of every day. Being a working mom of three young children (one of whom requires constant medical care) is not for the faint of heart. Plenty of tears have been shed from frustration, tiredness, fear, anxiety, and stress, but it’s in these moments I think of my brave Delila, wipe my tears, take a deep breath, and keep going. Part of these challenging moments include trying to balance and spend crucial one-on-one time with my other two daughters who need it more than anything. Being a sibling to a child of a complex medical condition is not an easy life, and it is critical to spend quality time with them to let them know they are just as important despite all the care and attention their sister gets.
None of this would be possible without the help of our amazing family. Having family as a support system is invaluable, and I cannot imagine how we’d do it without them! Whether it be watching Delila while my husband and I spend one-on-one time with the big sisters, helping me shuttle them to and from daycare or preschool, or just caring for any of my children while my husband and I try to get stuff done, our family support system has kept us afloat.
Probably the hardest thing about being mother to a child with a rare syndrome like Alagille is thinking of all the “what-if’s” and “when” – these ponderings really take a toll on you if you let them. Every day is not perfect or easy to say the least, but waking up each morning and making a conscious decision to declare, and believe that Delila will live a long, happy life despite the condition her heart and liver are in and her rare Alagille syndrome diagnosis, is what keeps me going. I know I’m not a perfect mom and I mess up often while trying to balance it all, but kids are resilient, forgiving, and amazing, and they will love us despite what mistakes we make. Cheers to the rare moms out there who are out there rocking it or hanging on by a thread (like me most days). We live a life that only we will ever understand – give yourself grace and most of all don’t forget to take care of YOU!
A poem by Valarie Velasquez
It’s 9 o’clock and off to bed you go,
you’re swaddled so snug and your eyes flutter slow.
I’m so proud you finished every single ounce,
of milk filled with meds most can barely pronounce.
We managed to make it with no spit up today,
and daddy’s NG tube placement this morning caused no tears, hooray!
Your constant smiles despite what challenges you face,
remind me that your petite little body is bursting with God’s grace.
We shared a wonderful day with family and lots of love all around,
and for a moment mommy forgot the Alagille Syndrome diagnosis to which doctors say you were bound.
It’s true sometimes mommy let’s their words get the best of her,
but her mind and faith have grown to a much better place than they once were.
Especially after heavenly days like today,
good night sweet Delila, you had a wonderful day.