Unexplainable Life

I was having difficulty determining a topic for a post for My Unplanned Life until I viewed a photograph that took my breath away. In fact, I was feeling a bit overwhelmed with my latest medical diagnosis and the requirements of the new lifestyle, but viewing this photograph helped me see things more clearly than I have in a long time.

Before I share this touching photo, I need to provide some detail. I am proud to report I am part of a very large and tightly knit Southern family. My Mom is one of eight children and my grandparents, whom I miss dearly, had 18 grandchildren and 20 great-grandchildren when they passed away. My six aunts and two uncles are an enormous part of my life and another reason I wanted to relocate back to Virginia from Pennsylvania. I feel complete being surrounded by loved ones.

Recently, my second cousin, Phillip, and his fiancé, Meredith, have been experiencing a difficult situation. Last October their son, Trevor, was born with hydroanencephaly, a condition where the brain’s cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. Or, in layman’s terms there is fluid where his brain should be.

Meredith was 27 weeks pregnant when she and Phillip learned of his diagnosis and were told their unborn baby would most likely not live even a day or two. While Phillip and Meredith were planning for his birth they were also making arrangements for his funeral. However, Trevor has surpassed all medical experts’ predictions and is now three months old.

With Trevor’s condition is the need for constant care and attention and Meredith is by his side 24 hours a day, seven days a week. She left her full-time job and continuing education since she knew her time with him would be short. Her devotion to Trevor is inspiring. She has spent more time in the hospital than at home and survives on very little sleep, food or social interaction. She fights for him, speaks for him and her love speaks volumes.

Talking to Meredith and Phillip about Trevor is remarkable and as a mother myself, I don’t know how they do it. During a recent visit to the hospital, my husband and I were in awe at how Meredith was able to handle a conversation with the doctor regarding a procedure Trevor was going to be having the following day. Meredith is fully aware and prepared that Trevor is going to die. Just the mention of a DNR (Do Not Resuscitate) immediately filled my eyes with tears; however, Meredith handled it like a true professional, or rather a mother who is taking care of her sick baby boy.

I have found myself praying a lot for Phillip, Meredith and Trevor these last few months. While I know we aren’t supposed to question God, I can’t help but wonder what God’s bigger plan was when He created little Trevor. While we may never know, I have to admit that no matter what the obstacle, I am proud of Meredith and Phillip; lesser people would have given up, others would have aborted the baby, or abandoned him. I have always known my family was full of heroes – these three just shine a little brighter.

Meredith and Phillip plan on donating Trevor’s organs when God decides his time here on Earth is over. According to them, “It was our decision that just because Trevor can’t live, doesn’t mean he can’t live on through other children.”

As far as the photograph that put things in perspective, it appears below. The first is a CT scan of a brain; the second is Trevor’s CT scan.

798186_326091717511512_784034744_o

Trevor’s story may be followed on Facebook at Travel’s with Trevor at the following link:
https://www.facebook.com/TravelsWithTrevor

Mama and Trevor!

Mommy and Trevor!

Baby Trevor during one of his many hospital stays.

Baby Trevor during one of his many hospital stays.

Daddy and Trevor

Daddy and Trevor!

©My Unplanned Life and http://www.shakinguplife.wordpress.com, 2013.

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About mswd

I am an individual living with a spinal cord injury. How the injury occurred, how I found out how severe my injury was and how my planned life suddenly became 'unplanned' is included in this blog. Also included is how the injury has tested my family and me. I believe you will discover it has been both a mentally and physically challenging ordeal and I learned a few lessons along the way. While I am still defining my life’s purpose since the injury, I have uncovered those who are injured, live with pain or have other obstacles to navigate are never able to escape. However, come with me as I explore ways to improve my life, learn to live with multiple neurological conditions, educate others and look for the silver lining. I believe with a little willpower, my caring family and God's guidance I will learn to forgive, hopefully forget how I was treated and dismissed by a doctor and uncover life's new purpose. I pray for painfree days and answers to questions that keep swirling through my mind. I also pray for a cure for neurological conditions and for the doctors to treat their patients with respect. Welcome to my journey. I would love to hear about yours!
This entry was posted in Being Thankful, Caretakers, Disability, Don't Give Up, Faith, God, Hydranencephaly, Self Discovery and tagged , , , , , , . Bookmark the permalink.

8 Responses to Unexplainable Life

  1. What a beautiful family. Thank you for sharing them with us Marsha. I pray for their comfort and joy together.

    • mswd says:

      Colleen ~ thank you for your lovely message. I am in awe of Phillip, Meredith and baby Trevor. I am proud to call them family! Thank you for your prayers ~ it means so much!

  2. Yes, I am also praying for Trevor’s physical comfort, for God to give Trevor’s parents comfort as they go through the process of seeing their baby die way too soon, and also giving them joy eventually in the knowledge that they will hold Trevor again after they join him in heaven. I know they don’t have joy right now but it is obvious that they have strength and faith. Praying!

    • mswd says:

      Rebecca ~ you are such a special friend and I so appreciate your ongoing support regarding Trevor and in other areas of my life. I am so blessed you found me and your guidance and love is felt on a daily basis. I appreciate your kind words regarding the post and know Meredith and Phillip do as well. Thank you for taking the time to write and to follow Travels with Trevor. You are a shining star in this often crazy and confusing world. XO

  3. Nancy Simpson says:

    Awe inspiring. What an amazing family.

    • mswd says:

      Thank you so much Nancy! They really are inspirational and courageous! Trevor is just precious and all those who meet him just fall in love…me included!

  4. Ali Harper says:

    I was alerted of your blog post as I am founder of Global Hydranencephaly Foundation and stay on high alert for all things related to the condition! Thank you for your beautiful portrayal of such an amazing journey Meredith, Philip & sweet Trevor are on…. difficult but worth every moment. I also have a son who was born with hydranencephaly in 2008, the inspiration for creating my nonprofit. Sadly, he grew his little angel wings on November 15, 2008. I hope you’ll consider checking out our organization’s mission and sharing our information with your family & friends. Awareness is so important in helping us to provide the information & resources necessary to give these little loves the best quality of life possible while they are here. (www.hydranencephalyfoundation.org) and on Facebook (www.facebook.com/globalHYDRANENCEPHALYfoundation) Thanks, again!

    • mswd says:

      Ali ~ thank you for your lovely message and for the wonderful foundation you created. I have such respect for the work you do! I have been a fan since Trevor was born. For legal reasons I don’t use my real name on the blog, but have my own personal Facebook page and Liked your page many months ago. Great communications by the way! 🙂 I can only imagine the journey you went through with your precious son, but then to take what you learned and to create a foundation to raise awareness…I am in complete awe. I began my blog following my spinal cord injury and I have meet the most wonderful, courageous people. Those who pick themselves up following heartbreak or tragedy and then take that situation and teach others what they learned. That is just what you did and look at what you have created and all the wonderful families who have benefitted from it. Without your foundation where would families like Meredith and Philip turn for help and advice? What you do is truly an answer to a prayer and a light during a dark storm. Please let me know if I can do anything to help. I will email you my contact information. Again, thank you for your kind message.

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