Without a Crystal Ball

Our Journey through Chronic Illness & Autism

When I was pregnant with Von, it was a very complicated pregnancy. The complications were primarily on my end and not at all related to how Von was developing. In fact while pregnant there were no indications anything was wrong. He measured small in size, but beyond that, his heart and organs all looked good. While I was pregnant, we had the discussion about going through genetic testing. Todd and I both agreed we would not do the testing. What was there or not there genetically made zero difference. We loved Von before he was born, and we simply wanted to be his parents.  Neither of us believed that love should be conditionally based on whether all of his genetic pieces were present.

 

Over the past three years, I have heard a lot of really insensitive questions about Von. It’s a part of parenting a child with a disability and a life limiting disease. I truly believe people have a very difficult time wrapping their heads around a child being sick and facing so much adversity. The one question of all questions I hear that bothers me more than any other is “Would you still have had him had you known while you were pregnant?”

My initial reaction when this question comes out of their mouth is to reach over and strangle them. I’m not a violent person. However, I do feel my fingers tightly curl in to a fist and see my knuckles become white. When this is asked to me, I genuinely wonder if the person truly understands the magnitude of what they are asking. They are asking me if I would have killed Von and terminated a pregnancy at 20 or more weeks. None of his issues would have been evident in an ultrasound until at least that point in time.  Can you imagine terminating a pregnancy at 5 months pregnant? I have met babies born at 23 weeks and I have seen them beat all obstacles and thrive. The thought of terminating a pregnancy based on something like missing genetic pieces or organs missing seems cruel to me.

A lot of times I have to remind myself that questions like these are asked because this situation is incredibly uncomfortable for most to handle.  Sick children make people feel uneasy. It is not natural for parents to bury a child, and it’s not the norm in society for a child to have to fight to survive. Most children grow, develop, and thrive. They don’t require multiple doctors, therapists, nurses and medication to learn, grow and live. However, for Von that is his reality.  There are a lot of kids living in our community like Von. I just happen to be a person that is putting the story out there. Most families sit in the shadows without a voice and face unspeakable discrimination and prejudice. I think this is why people feel like they can ask these questions to me. When I answer, I am answering for all the families that would say the same thing.

When you become pregnant and start planning your life, you have dreams and hopes for the child. However, the truth is they are just dreams. We as parents have no control about what will happen. There are many things that can steer things off course.  Children can have all kinds of issues that don’t fit in to our perfectly wrapped up box of what we want for them. In parenting a child like Von, I have learned you need to be very flexible. You don’t get to have the same kind of dreams. We don’t dream about marriage, high school graduation, prom, driving, or first girlfriends. Our primary goal is getting Von to a place where some of those things are attainable. However, the truth is he may never get there. He has a lot of diseases working against him. That doesn’t mean we stop trying, stop helping him, and give up because he’s sick. He still deserves to be a child, laugh, grow, learn and explore. As long as he is my child he will do all of those things.

Doctors have been very clear with us that we have no prognosis for Von. There is nothing that can tell us what his life expectancy will be. We enjoy every single day we have with him. We parent him, love him, cuddle him, kiss him, and give him the best we can so he is happy. There will never be a crystal ball for Von. However, we have hope and faith. We have faith that our doctors will help us, we have hope he will grow and learn, and we have faith that God will keep Von safe as long as it’s possible. It’s not easy at all. I would much prefer a child that had all of his glands working. The reality is that I do not. I would love him to not have neurological issues that cause his brain to be overly large or to have a cerebellum that is overgrowing his skull. These medical issues are who Von is as a person. If we have Von, we have Von for what he has in his body. I’d rather have Von than a million well children because he’s taught me so much about being a better person, better fighter, advocate, and how to have grace under immense stress.

If you ask me again if I would have terminated had I known again, I will let you with most certainty, “Absolutely not.” Then I will look at you and ask you “Would you have terminated your child because they may not have been everything your dreams wanted them to be?” The learning lesson here is simple. Don’t ask the question.

 

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7 thoughts on “When I’m asked about Whether I would have Terminated the Pregnancy

  1. Heather says:

    My husband and I have a disabled daughter. We found out at 22 weeks gestation that she had a condition named Dandy Walker Malformation. She has a huge cyst of fluid at the back of her brain. Due to the cyst she does not have a fully developed cerebellum. She was born blind, and spent her first 4 days in the NICU. She had a shunt placed at 3 months due to hydrocephalus. Once the shunt was placed and the pressure on her brain was relieved she gained vision. We were told to terminate when diagnosed at 22 weeks. We were told she would never walk, talk or even worst case senario, not know how to breath. She is now almost 4 years old. She walks, talks and is an amazing little girl. Her name is Angelica and we are so thankful for being blessed with this angel. Her disability makes her, well her. So I would never want to change who she is. There is an article out which is written by a mom who chose to abort her dandy walker baby at 36 weeks!! She paid $25,000 for someone to kill her baby. So very sad. Von is beautiful!

    Liked by 1 person

    1. Thank you for sharing! What great news that your daughter is doing so well! I wish that Doctors would just stop encouraging termination when things are not perfect.

      Like

    2. This is like reading the story of my pregnancy. My son is 5 in April, he is a beautiful, thriving healthy boy and I am so proud of him. I was told Benjamin had Dandy Walker syndrome at my 20 week scan, advised to abort on medical grounds up to my eighth month. He still has a cyst in the back of his brain between two of the lobes but (touch wood) until now this has not caused a problem. He has since been diagnosed with Middle Interhemespheric Variant of Holoprocensephaly, autism, hyper-mobility, SPD, APD, and many other diagnosis’s. He is under 26 clinics at the childrens hospital and has many therapists but he is amazing. Many people ask me why I chose to carry Benji full term not knowing what he might be like or if he would even survive but I just tell them that we are all here but for the grace of God. Who am I to dictate if this living, breathing, moving child should get a shot at life? If he wasn’t meant to be here he wouldn’t be. Don’t get me wrong he is the hardest thing I have ever done, more so as a single parent, and there are new battles we face everyday but I adore the very bones of him. He is my earth and who is anyone else to say he does not deserve a chance at life?

      Liked by 1 person

    3. charhenser says:

      This is like reading the story of my pregnancy. My son is 5 in April, he is a beautiful, thriving healthy boy and I am so proud of him. I was told Benjamin had Dandy Walker syndrome at my 20 week scan, advised to abort on medical grounds up to my eighth month. He still has a cyst in the back of his brain between two of the lobes but (touch wood) until now this has not caused a problem. He has since been diagnosed with Middle Interhemespheric Variant of Holoprocensephaly, autism, hyper-mobility, SPD, APD, and many other diagnosis’s. He is under 26 clinics at the childrens hospital and has many therapists but he is amazing. Many people ask me why I chose to carry Benji full term not knowing what he might be like or if he would even survive but I just tell them that we are all here but for the grace of God. Who am I to dictate if this living, breathing, moving child should get a shot at life? If he wasn’t meant to be here he wouldn’t be. Don’t get me wrong he is the hardest thing I have ever done, more so as a single parent, and there are new battles we face everyday but I adore the very bones of him. He is my earth and who is anyone else to say he does not deserve a chance at life?

      Liked by 1 person

  2. Abigail Clark says:

    Wonderfully said! I hope people start realizing that like any other parents, we love our “sick” children just as much as other parent’s love their children. We may not be able to dream the same dreams for them as other parents get to but our dreams are just as real, intense & hopeful. I believe having Special Needs children allows us a rare experience of growth & appreciation of life & family that most miss out on.
    Many Blessings: )

    Like

  3. Michelle says:

    I was pregnant with my 3rd child. I had an incompetent cervix, which required 2 cerclages to be placed, strict bedrest and the unknown. At 23 weeks I started to bleed. My placenta had abrubted. My husband immediately took me to the hospital where a team of nurses and doctors swormed my bed and asked my husband and I if we wanted to go through with delivering our little girl and telling us our chances are very slim for her to live and/or if she did survive the very high risk she would be severely handicapped. We immediately told them termination was not an option. I had an emergency C-section, which my husband and i didn’t have the chance to witness the birth. I’m proud Kaitlyn survived the delivery, overcame all obstacles while in the NICU the 104 days weighing 1 lb. 3 oz at birth and 11 1/2 in long. Today Kaitlyn is 3 years old and is thriving. She is developmentally on track and emotionally well! Kaitlyn hasn’t been back to the hospital since being discharged from the NICU.
    Thank you for your post.
    God bless!

    Michelle

    Liked by 1 person

  4. Thanks for writing this! We didn’t have internet back when I was pregnant with my son. Ultrasound was not standard during pregnancy at the time (unless they suspected a problem). I was measuring quite large, so at 30 weeks my OB ordered an ultrasound. It changed our lives. Our son had almost no amniotic fluid, severely enlarged and cystic kidneys and his urinary tract was a mess. His lungs were small. We were told he would be still born or die soon after birth. Even if we had the option of termination, it would not have been something I could have done. I did cancel all of the baby things I had on lay-a-way, my friends canceled the baby shower they had planned (I didn’t know about it until later). We had to go out of state to confirm what we had seen on the local ultrasound (no high risk pregnancy docs in our state). They did a lot of tests, tapped the baby’s bladder, his umbilical cord to do genetic testing (there was no fluid to do an amnio). The doctor actually told us that babies like that don’t survive and that we were young and could have other children! My baby boy was still alive and moving inside of me. My local OB told me that if he had any chance of survival, we’d need to go out of state to deliver him. I had already started to dilate at 32 weeks. My husband could not take off work indefinitely, so my Mom took off work and we went out of state and stayed with a friend of a friend’s mom. Our son was born at 35 weeks and although he was not breathing at birth (they didn’t expect him to ever breathe), he only needed a vent for 4 hours)!! He was born with kidney failure and his urinary tract needed a lot of surgical repair. He was on dialysis for over 4 years before his kidney transplant. He could get sick tomorrow and lose his life. He could lose his kidney, he could get a severe infection while back on dialysis, he is at a high risk of cancer. So many people talk about how I could let him be born and suffer so much. If you ask him…..his life isn’t a life of suffering! He also has autism, he doesn’t remember most of his surgeries. He plays video games, he watches TV. He argues with his brother. He is developmentally delayed, so will always need help managing his medical care, but he is far from suffering. Every second is precious. Every second is one more than we were suppose to have.

    Liked by 1 person

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