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Living with Sickle Cell Disease

Living with Sickle Cell Disease

Today’s post is going to be more personal than usual. I’m writing it from my youngest daughter’s hospital room. You may wonder what it has to do with being a paralegal, but sometimes I think it’s the 20-plus years I’ve spent in the legal field, advocating for others’ rights, that led me to where I am today, the adoptive parent of a chronically ill child. It does create extra challenges to work full-time in the legal field, while caring for a child with special needs. I’m lucky to have terrific supervising attorneys and the ability to telecommute from time to time. I’m going to use this opportunity to tell you about someone who inspires me every day, and who has taught me a great deal about empathy, courage, and moving forward even when the going gets tough.

A Pint-Sized Hero

It’s tough to find words to describe my youngest daughter, who has faced some hard medical and personal experiences with a tremendous grace and spirit. “Courageous”, “dignified”, “upbeat” and well, “tough” come to mind. She’s her mom’s hero.
She was born with sickle cell disease, an inherited blood disorder. Her body produces red blood cells which don’t live as long or carry as much oxygen as normal red blood cells. Some of the red blood cells are crescent or “sickle” shaped and can get stuck in blood vessels, causing excruciating pain and sometimes organ damage. These are called “vasoocclusive crises” and the pain can be mild or so severe that sometimes even IV morphine does not provide any relief. It is harder for people with sickle cell to fight off infections.
During my daughter’s early years, before I met her, she was frequently very sick and hospitalized for long periods of time. She had her spleen removed and had a port-a-cath inserted due to her many hospitalizations. Right before she started third grade, she was started on an amazing chemotherapy drug, Hydroxyurea (which boosts production of fetal hemoglobin), and enjoyed almost two years free of pain episodes. Her port-a-cath was removed.At the beginning of the third grade, she also met me, her eventual foster-to-adoptive mom, through a wonderful mentoring program, Big Brothers Big Sisters. This child and I went together like “peas and carrots” (quoting her favorite movie Forrest Gump). I like to think that God matched us so that we could be there for each other. Adopting through foster care is an awesome way to build a family. God knew that this child needed us, and we needed her.The Energizer BunnyMy youngest daughter has a boundless enthusiasm for life, undaunted by periodic bouts of severe pain and undergoing various medical procedures that would strike fear in most adults. She loves school, her friends, music, dance and theater. She is active in her church youth group. She won her school’s science fair several years in a row, and has been a student council representative. She wants to work with sickle cell patients when she grows up and has talked about becoming a doctor specializing in blood disorders, a psychologist or a nurse.We share her story, hoping to raise awareness of sickle cell disease, and to celebrate the life of an incredible young girl, now a young woman, who like the Energizer Bunny, just keeps going and going and going, even when the going gets really, really tough.
There is no cure for sickle cell disease, and not much effective pain relief for many patients. New treatments for sickle cell disease are being researched, and maybe in the next 7-10 years, there will be better ways to manage pain and prevent pain episodes. Maybe there will even be a cure that is accessible to everyone with sickle cell. Until then, despite the pain and occasional interruption of “normal life”, my daughter gets up every day with a positive outlook and a strong determination to live her life to the fullest while having lots of fun — sort of like Lilo’s bouncy little alien buddy, Stitch, with all his enthusiasm, curiosity and energy (but less destructive).A Paralegal’s Perspective on Chronic Pain
Witnessing someone you love experience excruciating chronic pain (sickle cell pain is often likened to post-surgical or cancer pain), and experiencing the extreme ups and downs it creates in our lives has given me more patience with the seriously injured clients I work with every day, plus an in-depth knowledge and experience of hospital procedures I’d previously only read about in medical records. I do have a special place in my heart for our clients who have sickle cell disease, knowing how difficult it is for people who have never experienced it to understand why someone who looks perfectly fine one day is suddenly incapable of talking on the phone or showing up to court the next day. I frequently say it is a mean disease, and it’s one that makes it hard for many sufferers to hold down a job, or even get to a hospital if they don’t have a strong support network.There have been periods in my life since my youngest daughter came to live with us that I have not been active in paralegal associations at all, concentrating all my energy on keeping my job and addressing my daughter’s medical issues. I’ve been very appreciative of her improved health and the opportunities to serve on paralegal association executive committees in recent years, as well as speak at many CLEs. But I’m thankful that, no matter what my daughter’s health situation brings to our family in the future, even if it’s necessary to cut back on extracurricular professional activities, that I can still blog from home or the hospital and promote the wonderful paralegal profession that I love.

11 Responses to Living with Sickle Cell Disease

  1. It's so brave of you to share such personal aspects of your life!

    I've dealt with my own health issues for a little over a year now. Some days everything is awesome … other days walking is a challenge … It is hard for friends and family to understand how you can go full throttle one day and not be able to stay awake the next.

    Bless you for being a supportive, loving and compassionate care taker! Love, patience and understanding are VITAL for folks dealing with things like this in their lives. Your daughter is a lucky girl to have you at your side!

  2. Hi Lynne I found myself today on the train looking for your email on my phone to send you an email and could not find it. I just got home from work but wanted to tell you that this post is so amazing. Thank you so much for sharing and even though I don't know you all that well I wanted to also say that your daughter has an amazing mom and friend in you. I'm sure it's you and your family's love that have made her or allowed her to become what she is today. You are amazing and I'm glad we're getting to know each other better. Call me if you need me.

    Ana
    The Paralegal
    The_Paralegal@yahoo.com

  3. I was touched by your posting such a personal aspect of your life. When it comes to our children we, as mothers, tend to be feverishly protective. Keep doing what you are doing for your family. You are such a good example to your daughter. Even in the most difficult days she always knows that you are there for her. You love, comfort, provide and support her. That isn't something to be taken for granted. I will be praying for you guys.

  4. Lynne, it takes much courage to live this story, to write this story and to share this story with the world! You are an inspiration to us all! Hugs and prayers. ~ Cathy Ribble

  5. Lynne: Thank you for sharing this with all of us. Sometimes we get so caught up in our professional lives we forget that each of us have personal lives with real challenges. You and your daughter are blessed to have each other and I am sure there is a higher power that brought you together.

Contact Info:

Lynne J. DeVenny, N.C. State Bar Certified Paralegal

Owner & Virtual Paralegal, DeVenny Paralegal Services

Email: lynne.devenny[at]gmail.com

Telephone: 336-582-0003

Inquiries are welcome, with free quotes available.

Meet Lynne:

Lynne DeVenny is a North Carolina State Bar Certified Paralegal with over 27 years of experience working on complex litigation cases, including medical malpractice, personal injury, workers’ compensation, and Social Security disability.

Disclosure: I am not a lawyer and cannot provide legal representation or legal advice.

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