There is Always Hope
by Ali Deal
I am really not one to share a lot. I was a shy child hiding behind my mom’s skirt. It’s interesting how God uses ordinary people who are totally unqualified. Because of everything that has happened in my life, I do honestly feel so totally unprepared and unqualified. However, I have learned that there is so much power in being able to say to someone, “I know how you feel.” By sharing the stories of our kids’ struggles, my husband and I have found so much healing in helping others carry their burdens.
It turns out we all have a story, and when we share it, we will never know who and how many we touch this side of Heaven. It’s never comfortable for me to put myself out there, but I realize it’s what God has called me to do. The reward is being able to tell people, “There is hope.” Or crazy medical stories.
Start with the birth of our daughter, Rosemary. Her name, hilariously, means “remember.” And believe me, we will remember. Although I thought we would never forget all we have been through, each year, it does feel more distant. However, when I recall the nightmare, parts of the story creep a little too close to comfort.
Rosemary was born a healthy 6.4 pounds on April Fool’s Day. It had to be the easiest delivery known to mankind. Everything was wonderful. I kept trying to feed her and was not successful. As so many parents with issues do, I justified it away. “She’s tired from the delivery,” or “Her stomach is only the size of a cherry.”
However, one of the nurses at Wadley Regional Medical Center (God bless you) shined a flashlight in her tiny little mouth and found a cleft palate. The entire roof of her mouth was split down the middle and opened up into her nasal cavity. Our world stopped in its tracks.
When the neonatologist came in and shut the door, he explained all of the dangers and issues that come along with this malformation. He explained that this could be part of a syndrome and that she could have major difficulties speaking. He said she would be tiny and sickly. He said we needed to understand the severity. I was stunned.
What was hard about having a child with special needs is having to work with your spouse on taking the news in your own different ways. I appreciate concise, factual talk, no sugar coating. Give me the cold, hard facts. Cody prefers them wrapped up in a package with a little hope tied up with the bow. This news was blurry. It was neither clear nor hopeful. It was a big question mark. We had no clue what was ahead of us.
Since she had little sucking ability, we basically fed her with a bottle that was like a water gun. As she attempted to suck, we squirted, hoping we would be in sync with each other. It was hard, and it was a disaster. We started feeding therapy when Rosemary was six months old with Lori Duncan who, in our opinion is an angel from heaven and a blessing to Texarkana. Lori was Rosemary’s number one advocate.
We are still with Lori to this day, and I call her our “bulldog of a therapist.” She has been a hero in Rosemary’s story. However, at the time, the doctors were still looking at her under a magnifying glass, and I wa dealing with postpartum feelings. Rosemary was not following normal paths, and several doctors were puzzled about her.
In those first few months of life, how a mom bonds with her child is through feeding. It’s usually a peaceful, special time. Our feeding times were like a wrestling match, and I had to think like I was taking the ACT. It was a disaster. We would be thrilled for her to gain an ounce, and cry when she lost an ounce. I was all too much.
I remember one particular day feeding her one milliliter a minute for one whole hour, hoping she could keep it down. We were on every prayer list in this town and receive handwritten notes and prayers daily. What was hard for me is that it was a known fact that the nurses could take better care of my baby than I could. It devastated me and stripped me of my rights of being her mom. I felt disconnected. I was more like an assistant to the nurse, and deep down I resented it. There was not much I could give her.
The weight checks at her doctor went on and on a few times a week for the first year of her life. I was familiar with the break room in the doctor’s office. They would yell, “Hey, Ali! We have brisket in the break room,” and I would walk back like I owned the place. At this rate, I was close to owning it. She needed to be 18 pounds to receive the anesthesia needed for the length of a cleft palate repair surgery.
At a year and a few months, she finally weighed 17 pounds, and they booked her surgery. We were thrilled and hoped this would really help our little girl. I’m leaving out three hospital stays at this point in the story. At one hospital visit, no doctor or nurse at Wadley could get an IV in Rosemary. They finally found a pediatric ICU nurse who had at one time worked in Life Flight, who was now a farmer in New Boston. He came in overalls and a trucker hat to Wadley and stuck her on his first try on this desperate Friday night. To us, he was an angel. That was a wild year, but God took care of us, and we didn’t lose hope.
The cleft palate surgery went perfectly. They fixed the top of her mouth kind of like a quilt… patches here and there. It looked great. Rosemary handled everything like the ultimate champ. She stole the heart of every doctor and nurse as she was always so happy. She never whined or complained about anything. She would dance back to the operating table. The surgery was done, and I finally had my baby. We headed home to Texarkana in little tiny pink arm restraints. I was ready to learn how to be Rosemary’s mom and not her nurse.
Things were great… until a few months later. She still was not gaining weight. We now know, she is just a tiny little thing. But since the doctors thought this might be linked to a syndrome, they still looked at her under a microscope. There were scopes, MRIs, and multiple doctor appointments each week. One doctor told me she was just a big “question mark.”
I was just starting to discover my maternal instincts with Rosemary when the doctors said the dreaded words that nearly put me into the fetal position. “FEEDING TUBE.” I crumbled. I felt worthless. I couldn’t even meet my child’s basic needs. I couldn’t feed her. I knew it was best for her and signed her up for the surgery, but everything in me resisted it. Other doctors’ orders were no food or liquids by mouth until we could tell if she was aspirating.
I cried thinking about us going to the beach and all of the kids drinking Capri Suns and other fun drinks and her silently watching. However, we got the tube. It was another successful surgery for Rosemary, and the feeding tube was in place. Then Cody and I had to receive feeding tube education. I remember staring out of the window and being in complete denial that I was having to do this.
The first time we put medicine through the tube Rosemary freaked out, and I watched her oxygen levels plummet to low numbers. Her lips turned blue, and hospital staff thought she was about to code. The nurses got her back quickly, and I was frightened, but I was also amazed. This little girl was a fighter. I could see it in her eyes as she fought back for oxygen.
I remember her sleeping through the first couple of tube feedings. As strange as it was, it was very peaceful. And peace was a good thing at the time. I finally felt good knowing that I was nourishing her through an alternative means. However, I was not pleased with the recommended formulas. They were packed with sugar and listed with the first ingredients was always “corn syrup solids.” I knew enough about nutrition to know that this was not what I wanted for my child. She was not getting the best nourishment.
I combed the Internet looking for information. I finally started making my own blends, with the help of our “angel speech therapist,” Lori Duncan. This is when I began to learn that sometimes Moms just know best. I would put straight carrot juice, aloe vera and bright green juices down the tube. I saw Rosemary respond for the better. God led me to a functional medicine pediatrician in Frisco, Texas. She informed me there was an organic whole food feeding tube formula on the market, and she worked with my insurance company to get it covered. It included things like flax seed, turmeric, chickpeas and spinach. It smelled like dirt and earth, but she couldn’t taste it. It went straight to her stomach!
This was a total game changer. As I fed Rosemary real food through the tube, I watched her come alive. Her skin became like velvet, and her brown ringlet curls started growing and shining. I started being able to clean out her closet because she was finally growing out of clothes!
I grew to love the feeding tube. If we had a long day of swimming and she fell asleep in the car, I could still plug her up and fill her with any kind of nutritional goodness I wanted to. If she was fighting me on taking medicine, I would wait until she fell asleep and plug her up to the tube! Something I dreaded so much became such a blessing in my life.
I laugh remembering one day the preschool teacher called me, “Um, hi! Rosemary is on the playground, and her tube is undone, and she is shooting out stuff from her stomach across from the playground like a water gun. We don’t know what to do!” I hurried to Target for an Ace bandage. One of my friends met me at the front of Target and paid for my items. This happened so many times in this community. People have been so kind.
From that point forward, we just wrapped her up around the middle with the Ace bandage. I discovered that cutting the legs off of a pair of tights made a perfect band for her to wear like a little tube top over her feeding tube. One day, the tube broke and my husband and his friends at State Bank fixed the feeding tube with some Duct Tape until we could get to Little Rock. We rigged it, Texarkana style! I find so much joy in helping moms accept the feeding tube. That feeding tube ended up becoming one of my best friends.
Wouldn’t you know, when the nutrition from the healthy formula made her thrive, and it was time to take the tube out… I was sad. The thing that I had dreaded and hated the most, the thing that made me feel like the worst mom ever, the feeding tube… gave me the power to help my little girl the most. And now I was so sad to lose it. I wanted all three of my kids to have them then.
As much as I hate to admit it, not me, but the whole medical community saved my daughter first. Then the holistic/nutrition world gave her the gasoline to become who she was meant to be. Then I was able to be her mom.
There are so many scares I left out of this story… scary rashes covering her body, dehydration, electric shock therapy for developing swallowing muscles, so many swallow studies, MRIs, hip braces for walking, low muscle-tone, then hyper muscle tone, multiple ear tubes, multiple FAILED hearing tests, a couple of nose surgeries, multiple blood draws, hundreds of vitamins, 10 surgeries total, countless therapies and evaluations, antibiotics and medications, and anti-depressants for me, enough prayers to cover the earth, many miles in the car, many fights between my husband and me, a lot of making up and apologizing, a brother diagnosed with type 1 diabetes, and a newborn brother with an abnormal newborn blood screening.
From that point on, besides driving her all over the town for all of her different therapy appointments, I finally get to just be her mom, and I am loving it!
I use this quote to wrap up our ever-unfolding story, “I would have never been brave enough to choose this journey, but I would do it all over again because it has shaped my belief and faith in God in a way I would never have been able to understand.”
The doctors can tell you anything they want to; they can give you any diagnosis possible, but one thing they can never take from you is hope. And in a story like this, a little shred of hope is all you need. And a few wonderful doctors and therapists! Our Texarkana heroes have been Lori Duncan and Cindy Jennings (speech therapists), Dr. Larry Hartzell of Arkansas Children’s Hospital and Dr. Paul Whitt of The ENT Group (surgeons), Dr. Rachel King and Dr. Annie Baker (pediatricians). We have a superb medical community who thrives on helping children!
Please reach out to me if I ever can help you. It’s MY therapy!
