I recently responded to a post on the Sickle Cell Warrior’s facebook page. A young woman who was dating a young man learned that they both are carriers of Sickle Cell and if they marry, there is a chance that their children will be born with SCD. This person wondered if she and her love interest should dissolve their wedding plans and never risk bringing a child with SCD into the world.
I was surprised that many people responded by saying, “Yes. Break up. No parents should ever bring a child into this world knowing it may be born with Sickle Cell Disease.” We are all entitled to our opinion, and I won’t tell anyone they are wrong for feeling that way. But I strongly feel differently about the subject.
There are no guarantees. There are many illnesses far worse than Sickle Cell. In pregnancy and childbirth there are many dangers that can leave a child damaged, injured, and physically and or mentally impaired for the rest of their life. Not being a carrier of a genetic illness doesn’t guarantee you a healthy child.
I, like my younger sister Kimi, am adopted. Kimi was put up for adoption because, unlike her other biological siblings, Kimi was not born “perfect.” She was born with portions of her brain missing; she couldn’t, walk, talk, see or do anything for herself. But during the twenty years she lived on this earth, Kimi impacted many other lives. Much of the spirituality I have, I attribute to Kimi being a part of my life.
One of my favorite stories during Christ’s ministry is found in John 9:1-3. It reads: “And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.”
What I’m about to say, I say not out of pride, but to glorify God. I have made a profound difference in the lives of many people. This has happened because of my illness. Those who are a part of my life have seen the many miracles that have surrounded it. People see the positive and spiritual manner in which I choose to live my life in spite of my pain and tribulations. Consequently, they are made better by it. This is a gift and a responsibility our Heavenly Father has given me. I am not alone in this. Many people with all sorts of mental and/or physical challenges touch the lives of those around them in very special ways.
Too often our society puts too much emphasis on glorying the perfection of the human form above glorifying the perfection of God’s love. There are many out there who feel that quality of life is defined by how physically and/or mentally fit a person is. All life has value and quality; regardless of how physically or mentally capable they are.
Yes, living with Sickle Cell is a difficult challenge. Yes, like others with my illness, I live with a lot of pain and discomfort; but it’s a life I’m happy to have. I’ve been blessed with an amazing family, good friends, and a faith in God that sustains me. If I had the choice to live the life I have or not be born at all, I would choose this life.
To anyone thinking of not bearing children simply because it might be born differently than most of the population, I beg you to reconsider. With every adversity come blessings in greater proportion. If a child is born different, a beauty will surround that life that would otherwise not be present. My sister Kimi, for example, could do nothing for herself. The consequence of that was, Kimi did so much to bless the lives of everyone in my family, and everyone that knew her. The same is true for those living with chronic illness; that is, through them, the works of God are made manifest.
This blog is intended to help people of all ages cope with many of the challenges that come with Sickle Cell Disease. When first launched, my target audience was teens and parents. Over the years, however, the scope of my content has expanded to help people of all ages who may struggle with similar complications as I. Whether you’re reading this for yourself or to help a loved one cope with Sickle Cell, I believe there is something here for everybody affected by this disease and other illnesses.
- Home
- About Me
- Dedication
- Introduction
- Contents of Topic 1
- Contents of Topics 2-5
- Contents of Topic 6
- Contents of Topics 7-9
- Contents of Topics 10-13
- Contents of Topics 14-16
- Contents of Topics 17-19
- Coping with Sickle Cell
- Health and Nutrition
- Leg Ulcers - My Experiences
- Leg Ulcers - Treatments
- More on Meditation
- My Artwork
- My Hip Problems
- My Music
- My Poetry
- My Sushi
- Red Light Therapy
- Thoughts / Experiences
I agree with you 110%.. The truth is that there are no absolutes. I have learned to live with my body and honestly the last time i had a major crisis was in 1997 (totally predictable i had messed up..) I am SS wouldn't trade my life for anyone's we all have it differently I was fortunate to have gone through the rigours of an engineering degree and came out great without any health/stress related delays, I presently run a successfull software development firm and I'm financially independant and a successfull tax paying contributor to society, I DON'T REGRET BEING BORN!!!! only foot ulcers remind me that In am SS and even those i have under control to the point where most people are not even aware. I'm glad my parents didn't follow simplistic shallow advice and went ahead and had me. Thanks for this article Jon.
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