“‘Your child has a disability called Holo-pro-sen-ceph-aly. Children with this disability typically do not live long lives.’ That statement changed my life forever. It was in that moment I felt like a failure as a mother. I sobbed and blamed myself for whatever misstep I made during my pregnancy that caused this ‘unplanned problem,’ I did not know it yet, but that moment of despair tied me to other mothers in the world getting similar news.
My journey started during pregnancy unaware of what was to come. After my husband and I found out we were having a girl, both hesitation and excitement filled my heart. I was only hesitant due to my teenage years, thinking this was payback for all the ‘teachable moments’ I created. My expectations evolved to plans, which was my first mistake. I planned our whole life in my head, including traditions we would create to rules I would enforce. Pregnancy was not a complimenting feature on me. I was miserable and short-tempered, but my dreams of my daughter kept me going.
The delivery day was typical in terms of water breaking, getting the best drugs ever, and our beautiful baby, Payton, being born. Everything seemed fine until it was time to breastfeed. She started having issues breathing out of her nose. I was scared, but my thoughts were, ‘The hospital is the best place for her to be.’ Barely getting to hold her, she was moved to the NICU. The hospital proceeded to discharge me WITHOUT my baby. That was one of the hardest things I had ever had to process at that time. It was so mentally and emotionally draining because no one could give me an explanation as to what was wrong with my baby. Five days of the NICU was summed up by a narrowing in her left nostril that should get larger as her face grows. With that promising news, we went home.
We got her home and like most new parents, the feeling of being overwhelmed overtook our household. Thankfully, our parents came in to save the day (and nights), so we could adjust to our new normal. After about two or three weeks, Payton and I were alone at home during the day. One day, she stopped eating and cried most of the morning. While on the phone with my mom, she pointed out I should take her to the doctor because it sounded like she was in distress. In my mind, I thought they would send me home with Tylenol and instructions. But the doctor came into the room and sat next to me. She said, ‘Go home, pack a bag, and go to the hospital. The ENT team will be waiting for you.’
I was terrified and alone. My husband was at work and so was everyone else. I called close-by family and my brother in law met us at the hospital. While I was checking her in, she had a seizure and stopped breathing in my brother-in-law’s arms. They rushed her upstairs and started working on her immediately. Trying to be strong and not freak out was hard, but I managed to hold it together until they got her stable. The next day, the ENT doctor said she needed surgery to open her airway. Her little body was working too hard. Of course, we consented. Nervously and prayerfully, we kissed and hugged our daughter.
The surgery was successful, but the doctor had other news. He told us he saw something that made him think she had an underlying condition. He scheduled an MRI for confirmation. Then he sat me down and confirmed she had Holoprosencephaly. The next statement out of his mouth was, ‘Children with this disability typically do not live long lives.’
Holoprosencephaly is basically where the two halves of her brain did not fully separate. It would cause physical and mental delays. The medical team told us not to Google stuff because it made everything seem worse than what it really was. But I did not listen. I needed to know what we were truly up against. It was not pretty, but it was informative. That whole 2-week period of staying in the hospital was brutal. She ended up getting a G-Tube (feeding tube) and was diagnosed with Diabetes Insipidus. Then we finally got to go home. Keep in mind Payton was only a month old at this point.
So here we were, at home with a type of normal we were not prepared for. In all honesty, I felt like my love was strong for our daughter but did not know how to apply it. This was uncharted territory I did not think I would ever be in.
Let me ask you something, Moms. Have you ever felt like you did not know what you were doing with your kids, but you could not let your naysayers see you trying to figure it out? You just had to go full steam ahead? I still have moments like that, and Payton is 5.
The hospital did refer us to a few resources. We did enroll in Early Steps (therapy services for children under 3 years old), but it was so much information coming at me at one time. We were fortunate enough to have a great Occupational Therapist at the beginning of our journey. She helped me in more ways than therapy. She was kind and truly helped me navigate my mental space on how to care for Payton. We relied very heavily on her doctors and their recommendations.
But I will tell you when things started to change. One day, we were at appointments all day and I was exhausted. Our OT saw me and said, ‘No therapy today. Go get some sleep.’ She even helped me get Payton to sleep. It dawned on me it was okay to stray from the instructions that were given to me. This is my child and I need to step up my perspective.
My mindset shifted. I went from asking questions from a scared place to really taking charge and asking from a place of ‘I need to be educated to make informed decisions on my own.’ I started establishing a schedule and after a while, Payton had her own calendar of events and appointments. One thing that solidified that feeling for me was getting to speak to other parents that had Payton’s disability. I knew they understood where I was mentally. I cannot stress enough the importance of finding a special needs support circle. Join those support groups on Facebook, go to the conferences. When my family and I went to the Families for Hope Conference for Holoprosecephaly families, it became clear to me I would one day serve as support and guidance for other parents one day, as these wonderful people have done for me.
These days, I am living in the moment and putting her in a position to thrive (in whatever form that looks like). She’s getting older and likes to do big girl things, like putting on lip gloss, having slumber parties, and her version of girl talk with Mommy. She literally makes friends everywhere she goes, and I am in awe of her. Our normal is pretty cool. Every day is not cupcakes and rainbows, but there are more good days than bad days.
This special needs journey is not for the faint of heart. Just like parenthood, there is no playbook or rules. You must make your own guide for what works for your family and be clear about those expectations with everyone who matters. My husband and I are so blessed to have THIS kid in our lives. God gave us an awesome responsibility to care for one of his unique children. We savor every smile, snuggle, and sleepless night. We trust the process we have put in action to help Payton reach her milestones. Payton has made me a better person and helped me see people through a different lens than I would have otherwise. Empathy and understanding are gifts I cherish every day.”
This story was submitted to Love What Matters by Shanéy Washington from New Orleans, LA. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories about special needs parenting:
‘Her brain doesn’t look normal.’ The odds weren’t in our favor. There was a 1% chance she would live six months.’: Baby born with Semilobar Holoprosencephaly defies the odds, ‘She blows us away’
‘I was divorced, he was divorced. There wasn’t a light at the end of the tunnel. It was there, in each other.’: Mom re-marries after ’emotionally abusive’ relationship, now ‘beautifully blended family’
‘All done?’ she whispered in my ear. ‘No, sweet baby. This is just the beginning.’: Mom of 8 learns of daughter’s cancer diagnosis day after adoption finalized, husband leaves, ‘How was this my life?!’
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