Charlotte is where the parents were educated about VNS (Vagal Nerve Stimulator). "VNS was an amazing thing. VNS, along with four seizures medicines, helped control her seizures these past four years. We were so glad this helped as the only other option was to do a surgery where they would disconnect the right side and left side of the brain (the hope of that surgery was that only one side would seize instead of the entire brain). Thankfully we didn't have to go through with it" said Alicia.
Brooke suffered from reoccurring pneumonia which puzzled the family. Around one year of age, she developed aspiration pneumonia and RSV. During hospitalization, a swallow test was performed and doctors realized Brooke was aspirating all intakes of food.
"Feeding intolerance was from the beginning. She had a feeding tube placed at one-year-old and did much better for a while but her reflux became a huge problem later, which led to a GJ-Tube, a tube that has two sides, one side going into her stomach and the other side to her small intestine. Once the tube was placed, the feeding was started at a slow rate and she was on 24 hours a day. Although she seemed to do great, reflux became a problem again and led to the surgery where her stomach was "tied" around her esophagus. This helped for a few months and then she had the same issue, and in addition, her body would not absorb food completely and would not break the formula down completely. We tried simple formulas to see if that made a difference and it didn't. Her stomach would become so distended which caused her trouble breathing. She was hospitalized three or so weeks before doctors figured it out. We left that stay with a central line and her only receiving nutrition through TPN (total parenteral nutrition) and she stayed on TPN for longer than three years. Ultimately she began not tolerating fluids. In the very end, as her heart grew tired --- it was unable to keep up with everything." says Alicia.
Alicia went on to say, "The central line was definitely something that had a lot of risk along with TPN but it did give her more time!" After becoming septic from the central line, Brooke would endure a two month stay at Levine's Children Hospital. The struggles to keep her oxygen saturation would eventually lead to a tracheotomy which was something the parents never thought they would see as a personal choice.
Brooke's mom explained, "For the first six months, or so, the trach really improved her quality of life, but like always, she started to get sick a lot and her baseline never came back to where it was before that sickness. In the end, we saw her declining. As parents we had always said we would not be selfish with her and we would let her go when it came time. Doctors said we would know when that time came, and well, there came that day when we, Jason and I, said, 'We can't keep putting her through all this...she is tired, her body is exhausted from working so hard all these years.' Kids Path, through Hospice, had already been with her for several years and we told them we wanted to focus on comfort and enjoying what time we had left with her...not seeing her miserable in hospitals all the time. We knew and still do know that her last breath, here, was a miracle for her because that next one she took was in the arms of Jesus. She was in a new and prefect body (we thought she was perfect before) but we know she, now, has a body that is not limited or bound to chairs and machines!"
Alicia says that she and Jason knew in their hearts that terminating the pregnancy was never at all what they wanted to do. She said, "We knew that this life was our baby and we understood that it wasn't going to be easy but this was our baby and Brooke went on to live longer than any doctor ever expected."
Alicia hopes that the Cockerline's story will encourage people enduring difficult medical situations not to give up, "It may not be easy but it will always be worth it."
Alicia said that Brooke led a very challenged life but their child was a happy child. "She had a smile that lit up the room and whoever met Brooke never forgot her."
Brooke enjoyed going to the beach, seeing aquariums, and sports. Alicia said, "Before Brooke got her trach, she loved sitting at the edge of the ocean where the waves would just splash up and hit her face. She would just cackle, water was her thing. As crazy as it sounds, she loved sports too; football, soccer, or basketball. The year the Panthers did so great, she would sit on our laps to watch and her legs would go straight out with excitement."
Music was also a passion of Brooke's. "During her last moments, music calmed Brooke's breathing and put such a peaceful look on her face! At The Celebration of Life, all music I felt was amazing but in reference to her last breath being a miracle, I think of the song called 'In God's Time'. The song says: 'miracles happen in God's time!' And they do! Another favorite was ‘Home’ by Chris Tomlin, my sister-in-law, Callie Carpenter, sang it. It says: 'there is a better place waiting for me, we'll dance on streets of amazing grace in Heaven, I'm going home where streets are golden, every chain is broken, I wanna go home! Thank God Almighty, I'll be free at last!' And I can see her dancing because she is free!"
As the parents of two children, Nate and a daughter who spent nearly half her eight-year-old life in the hospital, Alicia shares that although her family faced many challenges, "We went from two full incomes down to one, we didn't have an abundance of things but God truly blessed us with a great support system through family, friends, and church family. He gave us everything we needed to get through whatever we faced. We want to thank everyone for all the love, prayers, and support through these years! If it wasn't for our family helping with Nate so much and treating him like their own we couldn't have been there for Brooke the way we were! Nate spent most of his time with other people while Brooke was in the hospital and he NEVER complained. It's so easy to take things for granted -just like when Nate says, 'I love you.' I truly have taken that for granted because Brooke never could say it."
Alicia explained that even though letting Brooke go has been extremely hard, she reflects on the short life Brooke had here and sees it as a joyous. "We loved her so much (still do) and miss her so much but we are so happy for her because she is so much better and I cannot wait till the day I see her again! Of course there are times that I am sad, I miss snuggling with her but just to know that she is no longer bound to a wheel chair and hooked up to all those machines makes me happy."
I asked what advice Alicia has to offer to other parents facing tough decisions and uphill battles and this is what she said, "Things may not be easy, but they will always be worth it. One of the hardest things for us to do was let people help us but Pastor Harvey Gates said, 'Let people help you, they get a blessing by helping so don't steal their blessing.' Everything, everyone did, from going to the grocery store to helping with Nate, helped so much." She says that after being in a drive thru and watching a man be turned down for a dollar taco by three previous cars, she was able to reach out to him, "It made me feel so good just to give to him. I know, now, how others felt when they helped us. Let people help you."
Brooke's story was an amazing journey and her parents wish to continue spreading her memory by donating her medical equipment to a child/children in need. Alicia who once had a weak stomach to medical necessities, such as feeding tubes, has been inspired to help others and is now pursuing nursing school.
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