Navigating the Early Years with a Special Needs Child: Brooke’s Story
Unexpected Challenges and Unexpected Angels
Welcome readers to Part 3 of our series on the life of Brooke and her family’s journey through raising a special needs child. This section begins where the previous one left off—Brooke had a successful birth and arrived home without the need for any medical devices. Although everyone who knew her wishes that following her arrival home everything was smooth-sailing, the reality for all special needs parents is that things can go from great, to good, to okay, to bad, to worse very quickly. Eventually however, there is a point where you as parents learn, adapt and are able to settle into a routine. Getting to that point however is filled with lessons, wins and failures as you fully understand all the intricacies of your child’s specific needs.
This article will highlight the first 18 months of Brooke’s life and what an intense journey that was for her and her parents. However, while this article is meant to highlight some of the toughest experiences they faced during those first eighteen months of her life, it is also meant to uplift and inspire. Therefore, each section below while highlighting a crisis will also mention “angels” who came in to help Jason and Alicia in times they needed it most.
The First Few Months: Adjusting to a New Reality and Angel #1
Bringing Brooke home marked the beginning of an intense and journey for Jason and Alicia. Readers who have been following along this story will recall that Brooke was born in early October and just a few weeks before her birth Jason had been laid off of work. Alicia was doing cosmetology on the side and also working full-time at a day-care. Once Brooke was born she only had 4 weeks of maternity leave before she was “cleared” to go back to work. “Those first months, Jason got to stay at home with the kids, and he did great. Let me just tell everyone that the house was so clean and food was always cooked and dinner ready when I came home. Because he is great at that! He was a much better stay at home parent than I probably could be because I am just naturally disorganized and well….I’m all chaos,” she laughs so genuinely before adding, “He would also go alone or with my mom to all of the doctors appointments and therapy appointments for Brooke that I couldn’t make. That was hard for me because I felt I was missing out, but we had to make money.”
So early November Alicia was back to work and while she loved sharing their first Thanksgiving together a few weeks later, Christmas was just around the corner. Speaking to her at her lovely home, just across the street from where her mom and dad live, she shares, “See back there? Well we weren’t living in this house when Nathan and Brooke were born, we were living in a little single wide trailer at the back of the property. We had a whole lot of love, but not a lot of space and not a lot of luxuries.” In a time of financial hardship, added pressure of the holiday approaching, weariness, stress and worry she recalls the first of many “angels” who came to support the family unexpectedly. A week or two before Christmas a stranger approached their home, “It was in the evening, and dark too because it gets dark so early that time of the year. We saw some headlights coming up towards our place and this gentleman gets out of his car and comes to our door. I had no idea who this man was at the time; He comes up to our door, hands me this basket and says, ‘My wife and I just heard about Brooke and we want you guys to have a really nice Christmas with your family’. I think I said something like, ‘Thank you so much—that means so much to us.’ And then they left…just like that! I go back into the house and when he handed me that basket I just saw some fruit and thought it was a normal fruit basket. That alone was a thoughtful thing to do, but then we opened it up and there were cards inside.” Upon opening the cards, Jason and Alicia (young twenty-something parents with two kids under the age of two) got an incredible surprise. The stranger “angel” had gifted them with pre-paid gas and grocery cards of a sizable amount. With tears in her warm eyes Alicia recalls, “That money for gas, well we were driving almost daily back and forth down to Charlotte to see these specialists for Brooke—gas was a huge expense for us. To have our groceries covered too was just, I don’t really know the word to say how much that helped us.”
Sixteen years later, if you know Jason and Alicia now, they have paid back that amount dozens of times over in cooking for the youth of the Young Christian Athletes Association or the youth at Blazin’ Trails. When asked what she would do now if she again met that kind “angel” who changed their life with an act of kindness, Alicia says, “I was able to meet him and his wife at our old church years ago when they visited. Now, I just want to share what they did for us and tell people how much they changed our life that winter. We were so young and pre-occupied that I don’t even know if I thanked them enough. Now if I could see them again–I would hug them first and then probably cry. Then I would show them pictures of Brooke and Brooke’s Round Up and let them know how much their kindness mattered to us and the hope they gave us.”
After the joy of that event and sharing the holidays with their family, as the new year dawned new medical situations continually arose. Those winter months were long and challenging for the young family. Yet, through the unpredictability, Jason and Alicia began to grow not only stronger as parents to both Nathan and Brooke, but also stronger as a couple. The family learned, adapted and survived—and spring quickly came and summer approached. The young family of four had their first vacation in sight—a well-deserved vacation with their extended family to the beach. It would be a time of rejoicing and relaxation—well that was the plan…
A Life-Changing Incident: An Unexpected Seizure and Angel #2
During the aforementioned spring Brooke started physical and occupational therapy. It was at this point that Brooke was interacting with medical professionals on a regular basis who had the knowledge and experience to pick up on little nuances in behavior that an infant or a non-verbal patient exhibits. Some parents who have a special needs child might know the severity of their child’s disability right away, others like Jason and Alicia might not have that knowledge upfront. Each day was a waiting game, filled with appointments and tests, as Jason and Alicia flipped between hope and disappointment, trying to grasp the full extent of their daughter’s condition. “We definitely knew about the CMV at first, and of course the Microcephaly, but as the months went on and she was not hitting the milestones for “normal child development” we were told she most likely had Cerebral Palsey as well. It was her physical therapist who first said that Brooke might be having seizures,” Alicia recalls.
With Brooke on Medicaid due to the family’s financial situation and her disabilities, the best and timeliest of medical help wasn’t exactly “available”. Alicia says, “When her PT first mentioned seizures, I had no medical background and so I didn’t know what to look for or notice. But I took their recommendation and I booked an appointment with a neurologist. I was told the the waiting time was 6-8 months with her insurance” her eyes gloss with tears and she tightly grips the tumbler she’s holding as she continues in a soft voice with a mix of rage and sadness, “Looking back now, that was just unacceptable. How could that have seemed acceptable for some child so vulnerable?”
As they waiting for that appointment with a neurologist, still unknowing of the potential consequences of Brooke’s condition, the family set off for what was supposed to be a relaxing vacation to Oak Island, North Carolina. The entire clan of extended family stopped at a local Wal-Mart to do the week’s shopping. Gleefully, the ladies took their carts to handle the groceries while the men set off to the outdoors section to get fishing gear. Just a half hour into the trip, that glee turned into panic as Jason and Alicia faced an unexpected and life-changing incident for Brooke and themselves.
Jason had taken Brooke with him in her stroller when suddenly, Brooke began shaking and was turning purple. The initially happy day turned into a chaotic and frightening ordeal as “Mr. Mom Jason” quickly realized that something was seriously wrong. He ran through the store as fast as he could to find Alicia. Alicia recalls, “I saw him running towards me and in his face I could read it—something bad was going on. He just tells me ‘I don’t know what’s going on–she’s shaking and purple!’ And of course I didn’t know what was going on, but in what is truly, honestly a miracle to us this woman in the same aisle I was comes up and says, ‘I’m a retired nurse, your daughter is having a Grand Mal Seizure she needs to get to an ER NOW!’ This woman told us not even call an ambulance or strap her in a car seat—she said the hospital was less than a mile away and that we HAD to get there as soon as possible.”
Frantically, Jason and Alicia rushed Brooke to the ER at Dosher Memorial Hospital. Immediately the team confirmed Brooke was seizing and started care. Despite the high dosage of medicine, her seizure lasted almost two and a half hours. “Her oxygen levels had dropped to 20% which at that low of reading they told it was so low that the test wasn’t even reliable—her level could have been lower and all we knew was that just wasn’t breathing.” The result of that unexpected Grand Mal Seizure was that Brooke now suffered from twice as much brain damage that she had at birth.
Meanwhile, the rest of the family who was left behind at the store looked for this “angel” and she was nowhere to be found. The nurse’s timely intervention was nothing short of miraculous appearing at the precise moment they needed help and vanishing with equal mystery once Brooke was in safe hands. As Alicia says, “Now that I know what seizing looks like, if I ever saw another child experiencing what happened to Brooke, I would do exactly what that woman instructed us to do. She appeared in the moment she was needed most because we truly were stuck in shock and fear. Honestly she saved Brooke’s life that day.” The family spent a couple days in the ICU at Wilmington hospital while the staff got her on the appropriate seizure medication dosage. Then, they were able to take Brooke to the vacation home the family had rented and Brooke was able to go on the beach and see the ocean for the first time. In later years the annual beach trip was the highlight of the year for the family. Instead of the tragic and frightening first days of that trip—everyone remembered Brookes smile and delight with the warm summer sun on her face and the ocean breeze in her hair.
Something Isn’t Right: A Cry For Help and Angel #3
As briefly mentioned before, infant and non-verbal patients can be hard to to diagnose without the proper medical team that looks at the child holistically and pieces the puzzle together. It doesn’t matter if your Special Needs child is two-months or twenty-years old, their inability to verbalize what they are experiencing is a struggle for the patient and a source of frustration for their caregivers. Two medical issues that Brooke constantly faced in her first 18 months were (1) difficulty eating and swallowing and (2) constant (nearly continuous) bouts of aspiration-pneumonia.
Looking back on those two issues in hindsight Alicia recalls, “She was unable to really tolerate eating properly. We made her bottles to the be the consistency of milkshakes. We had to add rice cereal to them in order to make them thick enough that she wasn’t choking on every gulp. That was just our routine and what we did—because she couldn’t keep anything thin down. For the constant bouts of pneumonia, even in the warm weather months, the doctors just kept giving us antibiotics to treat it. So we followed their instructions and then she would get better for a bit, but it would always come back.” Like any parent they were doing the best they could to bring Brooke relief and to get her through to the next day. The routine of “what worked” to get Brooke fed and to alleviate her pneumonia became a habit, but as they later learned those two symptoms were linked. Soon they would discover that they were treating two separate issues with ‘band-aids’ instead of actually fixing the larger issue affecting her quality of life.
The winter following their summer scare at the beach, Brooke suddenly got worse one night. Alicia recalls, “We had been through pneumonia so many times with Brooke, that this time we knew something was different. She was really coughing and crying we could tell she was very, very sick. So we knew we had to go to the Emergency Room.”
Central North Carolina where the family lives is known for its temperate climate and generally mild winters. Likened to a comedy of errors, the night Brooke’s health went south just so happened to coincide with an extremely rare snow and ice storm. Readers from northern climates might be hesitant to believe this—but even with a dusting of snow schools will close down and businesses shutter. It’s due to the fact that this location is not equipped with much snow plowing and salting equipment because it would be so rarely used. Southerners are used to the news stations giving the warning and then everyone runs to the supermarket to buy bread and milk to “hunker down”. It’s just what we do.
Another layer of hilarity is added if you ever attended a family event with Jason and Alicia’s extended family—nearly every single vehicle is a 4×4 because they are big hunting and off road enthusiasts. Even Nathan and his cousins, all at driving age now, proudly pull up pictures of the latest additions to their hand-me-down trucks. At the time of Brooke’s medical incident however, cash strapped Jason and Alicia only had a little car and Jason’s work truck which was two wheel drive and a stick shift at that! With a smile on her face Alicia says, “The hospital was about 8 miles away but it felt like 80 miles. We had Brooke in between us and I was scared to death with every little slipping along the road. And poor Jason who is normally so calm, he was just focused and ‘in the zone’. I laugh now, but yes it was terrifying just getting there! When we arrived, I don’t know in that moment what I was more happy about—getting Brooke to the hospital or just getting all of us out of that little truck!”
The concerned parents did the right thing taking her there. Once at the hospital Brooke tested positive with RSV “Respiratory Syncytial Virus”. Unfortunately this was a time when the doctors’ failed little Brooke. Despite having RSV, and pneumonia, and her oxygen levels registering a little low—they declined to admit Brooke and instead sent the family home. “All I remember is them saying that they couldn’t do anything more for her. It’s so hard because when you have someone as medically fragile as Brooke, maybe it’s harder for them to work on her in our little local hospital. But they just sent us home and I felt so defeated.”
Thankfully, just a few hours later when morning came, Alicia called one of the doctors that had seen Brooke previously in her practice. “I called Dr. Benton because I just needed another opinion; the situation did not feel right to me. Honestly, Dr. Benton was a Godsend. I explained what had occurred at the ER and she was as shocked as I was that Brooke had not been admitted. She directed us to Levine Children’s Hospital that same day. She even called for us and told them that we would be coming.”
After getting examined at Levine’s, the two constant medical issues that plagued Brooke (difficulty eating and constant pneumonia) finally made sense when they were viewed as joint issues. Right away, the team there knew that Brooke needed to undergo a “swallow study” to determined what happened when Brooke tried to eat food. Alicia says, “They discovered that every single time she was swallowing she was “aspirating”. Essentially that means that all of the food was going into her lungs. Anything we put in regardless of the viscosity of it, was going into her lungs.” It was determined that the best solution for Brooke was to install a feeding line so that she would no longer be required to get nutrition through the traditional way. Not only would this stop the constant bouts of pneumonia, this would also allow Brooke to receive more nutrients which she needed to get strength and grow.
Brooke spent two and a half weeks at Levine’s getting the care that she really needed. Once she was finally discharged, Brooke was healthier than she had been in a long time and her parents finally had a solid plan to follow. It wouldn’t have been possible without Dr. Benton as Alicia says, “The fact that she took my concerns seriously and listened to me, it was invaluable. She is another angel who touched our lives.”
In Hindsight – The Kindness of Strangers
The early months with Brooke were undeniably intense, marked by a profound learning curve and emotional highs and lows. Alicia and Jason hope that sharing these three experiences underscored the unpredictability and moments of grace that often accompany the journey of raising a child with special needs. Despite the steep learning curve, their love for Brooke fueled their determination to provide the best care possible. Amid the challenges, there were moments of light and humor that punctuated their days. Also, and Alicia found themselves becoming adept at tasks they had never imagined—they themselves becoming stronger as they helped Brooke to gain her strength.
In closing, it’s common for any person in a trying time to lean on family and closes friends for the bulk of the support to get through whatever faces them. However let us not forget that there are sometimes amazing strangers that can leave an indelible mark on our lives. It is a lesson in the power of being kind, generous, patient and caring to all of those around us. There is no better way to say this than just simply quoting the “Golden Rule” that Jesus spoke of in Matthew 7:12:
“In everything, therefore, treat people the same way you want them to treat you,
for this is the Law and the Prophets.”
***We would love to hear your stories of a time a stranger/”angel” touched your life in an unexpected way. Please feel free to leave a comment below so you too can remind others of the power of kindness.