Are you a parent of a child born with Down syndrome, we’d like to hear your story. Click here to share your story!
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Your Child’s First Name
Your Child’s Age
Do You Have a Website / Blog?
What is Your Website
Does Your Child Have Siblings?
No, not yet but we plan to have two more kids!
Did You Have a Prenatal or Postnatal Down Syndrome Diagnosis?
How Was The Experience Surrounding Your Child’s Delivery?
Very biased and insensitive
What Was It Like Bringing Home a Child with Down Syndrome?
We were in complete shock.
We didn’t officially get her diagnosis confirmed for another two weeks so we felt so much confusion on how to feel. We weren’t sure if we should be thinking and starting the process of our grief or if we should keep being hopeful that the doctors were wrong because they mentioned to us that they had been wrong before. Once we received her diagnosis we cried a lot. The hardest part was grieving the loss of the daughter we imagined in those 3 years trying to get pregnant and during the pregnancy and learning to love the little girl we were blessed with!
What Has Development Been Like For Your Child?
Amor is a rockstar! I am a first-time mom so I don’t have anything to really compare her development to other than what doctors say and observing other little ones her age. I try not to compare her to others because if she didn’t have Down syndrome she would still be learning and growing at her own pace. But from a medical outlook, she is very healthy and thriving! She is very much on track with developmental areas as she would for a typical child at her age. She has just started to rock on her knees and attempt at crawling! Her muscle tone is improving every day and her physical therapist and doctors tell me that she is very strong!
What Are Some Good Surprises You Were Not Expecting About Raising a Child with Down Syndrome?
The community and the amazing people that we have been adopted into has been the biggest blessing! We have been so blessed to work with some of the people that are on the show “Born this Way,” and going to the different support groups and therapies for Amor has allowed us to meet parents that have a kid that is the same age and will be her lifelong friend!
The biggest blessing is being able to meet new parents and use our story to bring them comfort as those before us shared with us!! I believe that is what truly changed our hearts and mindset from the grief to the love and joy found in our daughter. This has slowed us down to be more present in the everyday moments and has truly given our lives greater purpose. I never knew how much this could make me grow as a woman and as an advocate!
What Are Some of Your Favorite Family Activities?
We love to go to the beach! We also love to spend time with all the family and bbq, go fishing, and play outside!
What Challenges Have You Faced?
The biggest challenges have been from within myself. The grief in those first months was the most difficult time. Learning to give myself the grace and accepting that I am flawed and there will be times that I have to process how I feel when something new comes up or someone says something that I feel I need to defend my daughter. I am a very pleasing person so this has forced me out of my comfort zone to advocate for her and I am getting better at it, but it has been very challenging for me.
What Would You Tell Yourself When You First Received Your Child’s Diagnosis Now That You Know What This Journey Is Like?
I wish so badly that I could go back and tell myself how much good has come from this one extra chromosome. I wish I could show myself the endless smiles and laughs I would have with her every day. I wish I could show myself that my daughter would look so much like me when I was little ( I was very afraid she didn’t look like us when she was born) and how much my husband would love her! I would tell myself that she is not the daughter I dreamed of… that she is MORE than I could have ever dreamed of!
My mind and heart could have never have created a baby more perfect for our life! I wish I could tell myself that in that moment all the scary things the doctors were telling us was because they were talking from a medical standpoint but that our daughter was going to come home from the NICU and she was going to hit so many milestones! Most importantly I wish I could tell myself in those moments when I questioned how God could do this to us, or what had I done wrong ? Were we being punished? I wish I could tell myself … that I will LOVE HER! I felt a disconnect from her in the first days because she was in the NICU and it was hard to not feel like I didn’t have a baby because she was away and she was not what I envisioned.
Lastly, I would tell myself how much I will see that there was never a mistake, that she is exactly what our hearts needed and I will see that our struggle with infertility prepared us to become who we needed to be for this amazing little girl.
What Would You Tell a Family Whose Child Just Received a Down Syndrome Diagnosis?
I would tell them to just breathe and love their baby. Try not to compare your baby to others and give yourself grace for whatever you feel with each new experience. Listen to your doctors but trust your gut more than anything! Let your kid guide you at their pace and enjoy each new day you get to grow together.
Please allow yourself the time you need to process the news but also find your tribe and surround yourselves with those that are on this same journey because having someone who knows how you feel can be the most comforting thing in the hard moments!