Early 2021, this little girl entered our world. While pregnant, I noticed she was not growing like my other babies. She continued to fall behind and at 36 weeks was measuring 31 weeks. Some babies are small and you’re getting older, my kind doctor explained, but I knew. We visited the perinatal specialist early the next morning. She recommended immediate delivery, and we headed to the hospital ready to meet our tiny girl. She was just beautiful at 4 lbs 11 oz. Then, the NICU nurses and doctors began pointing out differences. It could be nothing, they said, so I assumed the best. She was so swaddled and looked so perfect to me. That evening, I took off her little hat and opened up her swaddle and really saw her for the first time. She didn’t look like my other babies. I looked up at the nurse and said, there’s something wrong with my little girl. She nodded. My heart broke. The fear of the unknown and the hurt for her future pained Danny and me, but only for a night. The morning brought great hope in our Savior who does all things well. We rejoiced profoundly in her little life. We thanked God for giving us this most amazing gift! We embraced the future and trusted our kind, loving Father. A year later, Selah is thriving and an absolute joy! She should grow up and live a beautiful life. She’s still a peanut, weighing almost 12 pounds. She’s rolling over and working on sitting up. She will always have her mosaic trisomy 22 diagnosis. Her left limbs are shorter than her right, and she likely has hearing loss in her left ear. We monitor certain organs, scan for tumors, and she’s often ill. She has a team of doctors and therapists navigating this incredibly rare chromosomal abnormality. But, her smile brightens our lives daily! God knows what He’s doing. He’s worthy of our trust.
Life isn't always what we expect. There are unexpected blessings, devastating losses, and shattered dreams. One truth remains: God will never leave us or forsake us. Living with a child with disabilities will forever change you. The course of your life can be redirected overnight with one diagnosis. The life you dreamed for your child, yourself, the retirement plans that were made, the saving account that is drained from medical bills, countless specialists, surgeries, and appointments all create an overwhelming burden. Yet, this little life is depending on you and looking to you for love, support, and every possible need. Guilt may creep in, as you know their life is not a burden but a beautiful blessing. I am here to help as you grieve the loss of your previous dream and embrace a new dream. I will help you navigate the journey ahead and support you as you nurture those in your care. There is lots of beautiful living ahead.