Blazin' Trails Cowboy Church

Introduction To Part 2

The bible is full of indications that God loves and cherishes all human life as special and worthy. In the Book of Jeremiah (1:5) God says to him, ““Before I formed you in the womb I knew you, And before you were born I consecrated you.” Naysayers and non-believers may say, “Well IF God said that—Jeremiah was specifically chosen to be a prophet and that doesn’t mean everyone is like that. As a response to them, we Christians are reminded that in Psalm 139:13 David writes, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

All parents expecting a child for the first time at one point experience a whirlwind of emotions. Fear and uncertainty take hold one minute and the next minute overwhelming excitement and joy. However, finding out that you are expecting a special needs child is a life-altering moment, even if they are not your first child. Hearing the news that your child will not have a “normal” life or anatomy can bring on heightened emotions. For many parents, this news can be overwhelming (and if we are honest), even devastating—devastating not because you do not love the child but because you are concerned that the child will not have all of the opportunities that parents dream their children will have. It is important to acknowledge these feelings as valid, and common, and nothing to be ashamed of. They are part of the journey.

Alicia and Jason hope that this part of the series will help other families who have faced a similar predicament as theirs—the news that your unborn child will be different and that challenges will lie ahead. In a candid admission, they are sharing here the additional medical pressure from “experts” and “specialists” they faced to terminate their pregnancy once it was discovered that their child would be disabled. They know it takes resilience, love and most importantly faith to move forward with confidence that your Special Needs son or daughter deserves the gift of life no matter the hardships that your child or you as parents might face.

How Brooke’s Story Began—Surprise!

Brooke was not Jason and Alicia’s first child; their son Nathan was born July 9^th, 2007, four months after their one year wedding anniversary. Reflecting back on their marriage and first time as a young newly-wed couple Alicia says, “We were so young when we married—oh we just fell in love. I wouldn’t say we exactly were ‘trying’ to start a family so soon—we just trusted whatever God’s plan was. To be honest, when I was a teenager, by the time I was 16, I had already had several surgeries to fix some of my ‘reproductive parts’ as they call them. I was told it would be very difficult to conceive—if it was even possible at all! And Jason knew that going into it, but we just loved each other—well I guess I should say love each other because we still do—but we knew it could be really hard to have a child of our own. So when I found out I was pregnant with Nathan I can’t even describe how happy I was—especially because I was told it may never happen.”

Speaking with her yesterday at a Father’s Day cookout with the whole family, Alicia said, “Pregnancy with Nathan wasn’t exactly ‘easy’. He was a very active baby. I stayed sick as a dog with him. He was doing flips constantly inside of me!” Then, in a perfectly spontaneous, non-choreographed moment Nathan (now 16) was spotted doing intentional belly-flops into his grandparents pool.

When he was born, proud first-time parents Jason and Alicia couldn’t wait for him to be part of the brood. Alicia says, “I remember I was just overjoyed going to Thanksgiving that year and Mama and Daddy’s house. I was the last of my siblings to have a child of my own. I love all of my nephews so much and even to this day I just consider all of them my “kids” because we are such a close-knit family, but to have my own child with Jason it was just really special. Nathan was our addition to the crowd and he was such a joy.”

By March 2008, their house was already filled with toys and diapers and bouncers. Jason and Alicia were already busy, young parents in their early 20’s with a then seven-month-old son Nathan. Then, life threw them a curveball when Alicia found out she was pregnant again! Talk about a surprise. The young parents were excited, but also nervous…and maybe even a little worried.

They hadn’t planned to have another child so soon, but as the saying goes, ‘Man makes plans, and God laughs.’ Alicia says, “Brooke was not planned…at all! I mean we were young, we had our hands full with Nathan who was a wonderful baby, but still he was our first child and so as with all parents you have a learning curve. Then when I found out I was pregnant I was initially in shock! I had just finished being pregnant! How was i going to do it again so soon?”

Choosing Faith Over Fear: The Decision to Continue the Pregnancy

A little over 4 months into her pregnancy with Brooke, at week seventeen, Alicia found herself in pain so extreme that she decided to go to the Emergency Room. “The pain was so intense I was certain I was in early labor and was going to lose the baby. Jason was working overtime to make extra money because we really needed it—so I called my Mama to take me,” she says. As it turns out, it wasn’t labor or a miscarriage—it was a kidney stone. However since she was pregnant, the ER staff ran extra tests and discovered that Alicia had low amniotic fluid and referred her for a checkup with her OBGYN.

After a consult with her OBGYN, they noticed that the baby was not measuring where it should be so they subsequently referred Alicia to a neo-natal specialist. The specialist perform an ultrasound and ordered additional lab work. The lab work tested positive for CMV (cytomegalovirus). Let’s be honest—this was not good news. Frankly speaking, every parent wishes that their child will be born healthy and “whole” so they can live a life full of adventures and make their own path in the world. So what started off as a visit to the ER for a kidney stone turned into what seemed at the time like a full-blown rock landslide.

Adding an additional layer of emotional turmoil to the already upsetting news, this was the first test of faith that Alicia faced. The specialist suggested terminating the pregnancy and “trying for another healthy child later.” Alicia says, “Initially at the diagnosis, the specialists came off as cold and indifferent. They didn’t even really fully explain what CMV was, or at least in a way that I could understand. For them it was just an easy option to terminate…that we should give up now and try again. I left that appointment in just, I wouldn’t say denial or disbelief, but more like confusion and shock.” That was the beginning of a long and consistent pattern for Alicia and Jason, the continual push to “terminate” their child due to the potential hardships and reminders of the complexities of raising a child with significant medical needs.

However, in every dark day there is always a ray of hope. Alicia was the only the daughter of her family, Jason had only a brother, and all of Alicia’s siblings only had boys for children. While all the other grandsons are precious and wonderful– that was the day that Alicia learned that she was expecting a daughter.

Alicia remembers going home after the appointment with her mom. The drive in the car was a mix of small talk, complaints about the coldness of the staff, rationalizations, generalizations, and worry over how to try to explain to her husband and family the medical jargon that had been tossed her way. After giving the news to Jason she says, ”We did a lot of research on CMV on our own on the internet. After we “sort-of” understood what it was, we “kind-of” knew what to prepare for…for the most part. With every appointment after that, the doctors continued to tell us she (Brooke) would probably not make it past birth. So that was always in the back of our heads.” Believing deeply that their child was meant to be born, they made the courageous decision to continue the pregnancy, despite the uncertainties ahead and the pressure from the doctors.  Alicia says, “We never had feeling of doubts about going through with the pregnancy. Termination…that was never even a thought in either of our minds. It was the doctors who first suggested it. As the weeks went on, continually during check-ups were just appalled about how many times the doctors would push it on us and tell us that our child would be too big of a burden because we were young. At one point I think I even snapped and shouted at a doctor and said–‘Enough, just stop it. Stop suggesting it!’ It is sad to think how many people fall into the trap of they feel like they have no other options but termination.”

Despite their talks on faith—practicality also set in. Alicia says, “We had long hard discussions about what life was going to look like or could look like for us as parents and as a brother with Nathan. Then, obviously what life did look like once she was born wasn’t exactly what we had ‘prepared’ for.” Oftentimes in these situations parents expecting a Special Needs child feel they need to ‘put on a brave face’ or hide their concerns from other people. Luckily they had one anther to talk to and a family who supported their decision. Yet even with support and preparations for what was to come, there were moments when Alicia was alone with Brooke and knew that she would face challenges ahead. Alicia recalls, “I knew that she did not move nearly as much as Nathan did when I was pregnant. I think there’s always denial because you always want to think positive until you’re at the point and you know that this is it. But at times I would sit awake and speak to her just the two of us. I wanted her to know she was not alone.” If you, our reader, can take a pause here and imagine that situation, hopefully it will remind you that in those quiet moments alone when we speak and pray to God earnestly, without the noise of others and without the need to put on a show, we truly learn that Worry is defeated by Faith, Fear is defeated by Hope, and Grief is defeated by Love.

Arrival Time – Welcome To The World Brooke

Although now (16 years later) Jason has a very successful career, at the time when they were expecting Brooke, Jason was still working in the construction industry. Everyone remembers the devastating effects of the financial crisis of 2008 and the crash of the housing market—now it seems like a bad dream, but it was a harsh reality at the time. All around the country people were losing their homes and homelessness and hopelessness abounded. From the initial diagnosis at 17 weeks, Jason and Alicia would have had just under 19 weeks (or almost 5 months more to prepare), but Brooke decided to come 5 weeks early meaning that only 3 ½ months later she would arrive.

The “rock slide” gained momentum and two weeks before Brooke arrived, Jason got the news that the construction company he worked for was going under. He was laid off and with that went the family’s health insurance. Alicia, a cosmetologist at the time, became the only source of income for the family. “I often joke that the extra stress of him (Jason) being laid off was what sent me into early labor,” Alicia says, “but it was just yet another obstacle and another test we were faced with.”

When Alicia felt her first contractions, and this time she knew the difference between having a baby and having a kidney stone—she told Jason it was time to go to the hospital. After her arrival an entire entourage of doctors and specialists were assembled to prepare for baby Brooke. In the back of Alicia’s mind were still the words, “She probably won’t make it past birth.” Alicia recalls, “It was a little terrifying considering there was about every doctor and specialist in the room with me. But even though Brooklyn did come 5 weeks early—she required no assistance from any machines at birth. Even the doctors were amazed at that. There they all were standing around waiting for the worst and our little girl proved them wrong. I think that was the first time she really made people smile just from her fighting spirit.” Brooke was born with CMV as predicted and she also had microcephaly (an under developed, small head) as well as Petechia (commonly referred to as raspberry rash).

So on October 8, 2008 Brooke was born at a mere 5 lbs 15 oz. Jason and Alicia had another child they were never guaranteed, Nathan had a sibling and friend, and finally the family had a granddaughter to love. Just two days after she was born, even as a premie, Brooke was able to go home without any medical devices. Alicia reminisces, “I think sometimes about how they told us to terminate and that we could always ‘try again’. Given the fact of my medical history and that I never even was guaranteed to have a child to begin with—Nathan was our first miracle and then Brooke too. If I had terminated Brooke and ‘tried again’ as they suggested….well they were wrong. We were never able to have another child after that. We didn’t get a third chance. If I had taken their advice, had termination been the route we chose, we would have missed out on one of the biggest blessings and some of most abundant, joyful years.”

A few weeks after Brooke came home, her “raspberry” rash was gone and pumpkins were on the front porch of Alicia’s parents home as she and Jason walked up the sidewalk—two kids in tow. Once again, it was Thanksgiving day. And they did have something to be very thankful for—Brooke was finally home.

***It was their faith in God’s plan that provided Jason and Alicia with the reassurance that they needed to move forward with confidence and continue their pregnancy. If you are a young couple expecting a Special Needs child and feel lost or scared, please know that you are not alone. You can reach out to the team at Blazin’ Trails Cowboy Church or leave a comment on this post. We also encourage you to pray earnestly to God and find a church, support group, or even just a kind person to listen to you. It is through building a community or network (whether in-person or online) that that during your struggles you can find valuable insights and support. Fear, anger and pain are all a part of our lives, but do not forget that hope is also a shared experience. We started this post off with a verse from Jeremiah and here is one later from that chapter which imparts HOPE to you:

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future” (Jeremiah 29:11)