We were relieved to have a secure car seat ready and waiting for her, along with all her basic necessities. We were planning a home birth as we always had quick and hassle free deliveries with our other 𝘤𝘩𝘪𝘭𝘥ren, and we had such a wonderful experience with our precious home birth.
My water broke one night, after laughing hard at something, I told my husband, Jeff. He took me by surprise because we were three weeks away from our due date. The laƄor took longer to activate than he expected, but once he started, ShelƄy was quick to arrive.
As he pulled her closer to my chest, I noticed that her ear looked small, but I chalked it up to typical newborn softness and just soaked in that precious moment with her. I could tell something was wrong by the look on our midwife’s face. As he lifted ShelƄy off my chest to give me a better view, I saw that she looked different. My inner mom started shaking and I thought, ‘So what? What’s the point of showing me her differences? I just stared at her in awe, with nothing but love and admiration.
In the midst of my postpartum haze, I realized that I wasn’t getting enough air. She was almost gasping and was quite purple. My mother’s anger turned to concern, and she was grateful to have two midwives there, who could spot warning signs so quickly.
The next few moments were a whirlwind of emotions as EMTs arrived and took ShelƄy away. Jeff traveled with her while I stayed behind with my midwives so they could assess my stability and clean me up and take me to the hospital. That was the longest hour of my life. They gave me a Ƅagel that I really didn’t want to eat. I sat in a rocking chair, empty-handed and heartbroken. I really wanted to get up and go out in whatever car I could find, just to go with my girl. It was pure torture.
When we finally got to the hospital, they took me to a room where my dad and Jeff were waiting. The reality of our situation hit me like a ton of bricks at the time, but I tried to maintain my composure so I could listen to whatever information the staff had to give me. They were still working on Shelly, making sure she was stable before taking us to see her.
When we walked into her room, my heart sank. I couldn’t see much of her pretty little face because there was tape and duct tape. If they hadn’t found a source of life for her, I would have pulled them out and run to her house where my mommy heart wanted her to be. I should have come home to her couch taking care of her, surrounded by Jeff and our kids, smiling and admiring every inch of her. But we were here, in this hospital room, with the nicest people you’d ever want to meet (at least not in this circumstance).
That first night was filled with many assumptions instead of answers, but those assumptions ended up being correct. Our daughter has Treacher Collins Syndrome. She has underdeveloped ears, cheekbones, and jaw that make her look a little different than most of us. Her jaw sits far enough back for her tongue to press into her airway, so she had to undergo a tracheotomy to help her get enough oxygen. She also has a stomach feeding problem, as eating her mouth was a long and complicated learning experience for her.
He spent the first five weeks of his life in the NICU. We were visiting every day until I felt bad and that day, her grandparents came up to love her. I just remember crying every once in a while all day, missing my 𝑏𝑎𝑏𝑦 girl, while simultaneously feeling horribly guilty for not being present enough with my other children. It was a struggle trying to find a balance between the hospital and home.
Courtesy of Emily T.
So many people sent meals, 𝑏𝑎𝑏𝑦 sat down, sent gas cards, blessed us with good wishes, and did what was necessary so that our focus could be on getting our 𝑏𝑎𝑏𝑦 home to where she stayed. The outpouring of love and support took our breath away.
In the two years since she moved home, ShelƄy has spent many hours in therapy at home and seeing doctors and specialists. We have put a lot of energy into doing everything we can to help our family adjust to a new normal while making them feel comfortable and safe.
She has had one outpatient procedure since her time in the NICU and has many more surgeries and procedures ahead of her, but we know she will get through it all because she is an incredibly strong and determined girl.
The impact that ShelƄy has had on our lives, as well as the lives of so many people around us, is inexplicable. She has shown that her disability will not stop her. She is a brave and headstrong girl who likes to dance to music, climb on all the furniture, and try her best to keep up with her older children. She loves a lot, protests a lot, and plays even harder.
Currently, the only therapy ShelƄy has is speech, and we are also working on sign language. For a long time, she had it easy in this department because all she had to do was point or squeal at her pretty little eye and whatever she wanted would show up. Now she’s learning that she needs to sign or speak words to get what she wants and let me tell you, her two-year-old attitude comes out full force in those instances.
She is so fun, so loving, so full of life, curiosity, charm, and courage. We always hear such wonderful sentiments from loved ones and strangers alike, about how she has impacted them in one way or another. It makes our hearts soar to know that this girl can bring so much light to the world without lifting a finger.
We never knew our lives would take this turn, but we are so thankful that God has chosen us to love and raise ShelƄy Lyn. There are so many difficult things about having parents with special needs: worry, fatigue, loneliness, fear…. But the blessings far outweigh any darkness and we are beyond the blessings of ShelƄy and the rest of our 𝘤𝘩𝘪𝘭𝘥ren. Pouring yourself, your whole soul into another person in this way, is the greatest honor we could think of. Our faith has been strengthened, our voices have found each other, and our vision of the world around us has been thrown open. Shelly has changed all of our lives for the lyrics.
If you are a new parent with special needs, in any capacity, we want you to know that you are capable! You are so unlucky! You will encounter a lot of struggle as you walk through life with your precious 𝘤𝘩𝘪𝘭𝘥, but you will see that every moment of pain, every sleepless night, every medical scare, every moment of fear is worth having here with you. They will exchange you for the letter. They will have such a wonderful impact on the world around them. Keep pressing forward!”
This story was given to Loʋe What Matters Ƅand Jeff and Emily Terry from Michigan. You can follow his journey on Instagram. Do you have a similar experience? We would like to hear about your important journey. Adapt your own story here. Be sure to sign up for our free email newsletter to get our latest stories and YouTube for our latest videos.
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198 Shares Tweet Email act kindness, 𝘤𝘩𝘪𝘭𝘥ren, Compassion, craniofacial differences, facial deformities, facial difference, family, tuƄe feeding, health, home birth Kindness, loʋe, Loʋe What Matters, мoм of six, мmother, мotherhood, NICU, nicu 𝑏𝑎𝑏𝑦, NICU Life, parents, parenting, special needs, special needs мoм, Treacher Collins Syndrome “What are we supposed to do?” It must be my fault. I turned to Google for answers and was terrified.’: Mom has surprise 𝑏𝑎𝑏𝑦 with Down syndrome, ‘Life looks a lot different now than 5 years ago’ It wasn’t until I woke up that my wife and I really learned it was my 11 year old son. Absolutely melted my heart!’: Nurse’s dad says ‘the little things you’re doing are so much bigger than you think’
