“When I was pregnant with Addie we went to our 20 week sonogram and were so excited to see if we were having a boy or girl. During the ultrasound the tech let us know we would be having a girl and we cried and hugged each other in excitement. Shortly thereafter, the tech told us we would need to speak to the doctor. We looked at each other in fear. The doctor explained, ‘Addie has an abnormality and needs to see a maternal fetal medicine doctor.’ We were so heartbroken something was wrong with her and left the doctor office in tears and full of worry. We went to the maternal fetal medicine doctor for more scans and an amniocentesis and quickly found Addie had genetic differences. All the possibilities about Addie’s life were shared with us but we had already fallen in love with her and proceeded with the pregnancy. It was hard and scary, but the dream of Addie made it all worth it. Geneticists could only guess what things could affect Addie but there is such a wide range of the possibilities we decided to see for ourselves and not put limitations on her. I’m so glad we took that leap of faith.
Five years ago, she was born. I remember being in the operating room for my c-section and a whole team of doctors and nurses in the room waiting to whisk her away to the NICU. We’d known she would have medical complications, but it didn’t make it easier when I didn’t hear her cry and they took her before I could see her. When I finally was able to see Addie in the NICU I didn’t see her hydrocephalus or sacrococcygeal teratoma (a tumor the size of a peach on her bottom), I just saw her. I thought ‘she was the most beautiful baby I’d ever seen. It was just us, Addie, and the nurse at that moment, but we would find out more about Addie and her chromosomal differences in the days, weeks, and months to come. At that moment I was just happy to have her.
The next day I had my husband Mathew wheel me to the NICU in a wheelchair to visit Addie. She was such a fighter. She kicked her legs, threw her arms around, and cried. The resident who was checking her out was making her angry and all I could do was laugh at how strong she was. I felt so proud of her and her fighting attitude. I took video of that moment and I love watching it over and over so I can hear her voice. It was the last time I heard her cry because she was intubated shortly thereafter for bronchomalacia (floppy bronchial tubes). I won’t lie, it was tough to see her intubated. It was hard to see her cry and not hear a sound. If you’ve ever seen someone intubated, you know how hard that can be.
Three months passed and I quit my job as a teacher. I stayed by Addie’s side every single day while my husband worked so we could pay our bills. It was hard to see Addie in such a fragile condition. At this point she’d had three surgeries; for her heart, to remove her sacrococcygeal teratoma, and for a g-button, and it was suggested Addie should have another for a tracheostomy. We fought Addie having a trach as much as we could. We didn’t want it. There was a certain stigma around it (It is considered ‘weird’ and ‘gross’ to have one.) and we didn’t want to put our daughter through that. After talking it over more and more we decided to proceed. It was the best thing we ever did for Addie. She had so much more freedom to move around despite still having lots of cords. I remember the first time I saw her lips after that surgery. I couldn’t stop kissing them and telling her, ‘I can’t believe your lips! They are the most beautiful things I’ve ever seen!’ They were such a sight to be seen since they’d been hidden by tape holding the endotracheal tube in her mouth for months.
The time after the trach was a roller coaster. Addie would have good days breathing well with the ventilator, having guests visit, or even getting to dress up for holidays, and she would have bad days with random illnesses or breathing complications. After a transfer to another hospital, returning back to our old hospital, a craniotomy, and a new diagnosis of epilepsy, we’d had many talks with doctors about Addie’s quality of life, the possibility of her dying, and their expectations for her life. ‘We don’t know if she’ll even live.’ As a first-time parent, it was terrifying. We hated having meetings with the doctors because we would always leave either crying or on the verge of tears.
One meeting in particular Mathew and I invited both sets of our parents to join us. Meetings somehow seemed easier when our parents were there. We definitely needed all the support and comfort we could get. At this particular meeting a doctor started listing all of the things Addie would never do. ‘Addie will never walk, never talk, never write, never go to school.’ My father and mother-in-law are the more vocal of our parents and I could see them fuming. My dad proclaimed, ‘You don’t know God! You don’t know what He can do!’ I’ve always given my dad grief for his outspokenness, but it was so great to hear that day. We just wanted to stand and shout. ‘YES!’ I know doctors have experience and knowledge, but sometimes, that can cloud the thought that they’re giving their best guesses and maybe, just maybe, God has other plans.
We knew the fighter attitude Addie had and we could see what this man couldn’t. Addie spent 10 months in the hospital that first year. The doctors never thought she’d actually make it out alive from the hospital, yet she did. At 10 months old Addie finally was breathing well, was healthy, and stable. The PICU made a sign for her when we left the hospital and I remember taking tons of pictures with her before we got in the car as a family of 3. It was wonderful.
As soon as Addie made it home, she started on occupational and physical therapy. An hour and a half session twice a week would wipe her out. She usually couldn’t last even an hour for the simplest of tasks. Still, her therapists showed up every session. They would work with her even as she slept, trying to wake up muscles and stretch her. They would use reflexes to help her realize to kick or march her feet in sensory bins as they held her. They would stretch her fingers and help her go from sitting to standing. This took years. Despite it all, Addie never got upset. She may have pretended to play possum to get out of therapy a few times, but I think Addie knew how hard she needed to work, and we always gave her as much support as she needed.
This summer, we made the change from having therapy in our home to going to the clinic. Addie was finally healthy enough, and we thought it would benefit her. The therapists expressed interest in trying to get Addie to walk in a gait trainer. They would lift her feet, one in front of the other. But one day, August 27th, when Addie was 5 years and 1 day old, Addie got in that gait trainer and lifted her own feet. She took 4 steps at a time. Then 4 more. And 4 more. I shouted, ‘She is WALKING!’ We couldn’t believe it. The therapists and I got teary. After years of work, after hearing from the doctor that she would never walk, Addie was walking! It was incredible. I said, “Oh my gosh Addie! You’re walking!” I couldn’t even believe it was real.
The days and weeks since then have been amazing. Addie is taking more steps on her own and it has only been a month since those first steps. She is getting faster, more deliberate and more excited. We have full expectations that this time next year she will be doing even more.
God had plans for Addie we could not even imagine. Plans for her to walk despite the odds have just been the icing on the cake. In fact, Mathew and I have been talking the last few months about needing to get a van for Addie because our little car just doesn’t have enough room for her equipment anymore. I can’t wait to have a van for Addie so we can take that gait trainer and practice walking everywhere! It’s an incredible miracle and we are going to continue to keep proving people wrong with all she can do! My main hope is one day Addie is able to just hold her head up by herself and walk even further and faster than the day before. It may sound like a small goal, but these are mighty goals in our eyes!
For any parents out there with medically fragile children, I can’t encourage you enough to have faith in your children and their abilities. Keep a mindset of having no limitations, support them as much as possible, and most of all, keep your faith.”
This story was submitted to Love What Matters by Stephanie Wolfe of Waco, TX. You can follow her journey on Instagram. 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.
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