Dear Chronically Ill Mom,
Being a mom is a tough job. Being a mom with a chronic illness is even tougher. Making the decision to have kids when you have a possibly genetic chronic illness is even tougher than that. And having a chronically ill child is incredibly tough - the work, the constant extra worries, the stress, the financial burdens, the constant appointments, and the helplessness; the fact that you can never take that pain away.
Others may judge your decision.
You may face dirty looks and condescension. Doctors may disagree with your decision. You are going to face more struggles than you think you can handle, and you may not have the support system, and you may feel like there is no one you can talk to - because it was your decision and some people judged you for it.
It's always a question: 'should I have kids? Should I risk them being sick? Should I risk transferring all of this illness to a child?'
I am 28 years old.
Since I was 14, my body has been riddled with inflammation and illness, constant chronic pain, constant medication, doctor's appointments, hospital stays, and emergency room visits. I have lost parts of me (literally and figuratively) that I will never get back. I am always in a state of waiting, never knowing how I will feel day to day, and sometimes the pain seems unbearable.
I have been treated well and treated poorly by people in the medical community, strangers, ex-coworkers, 'friends'... I have been misunderstood by countless individuals....
I have been diagnosed with over 15 different chronic illnesses - all of which have their own lengthy list of medications, complications, associated diseases, and worries. Some include Hereditary Angioedema, Crohn's Disease, Early Onset Macular Degeneration, Ankylosing Spondylitis, and Hashimoto's Thyroiditis.
BUT
I wouldn't trade my life for the world. I love my life. Yes - there have been many days, weeks, even years that have tested my strength and my resolve, I live with chronic pain and with chronic fear.
My parents had no warning that they would have a child with illness.
And thank goodness they didn't!!
I have had an amazing life so far - and I know that it will continue to be amazing!
So - if you are a mommy or a mommy-to-be, and you are worried about passing on a difficult illness, don't let the judgement of others sway you. Obviously, I always recommend speaking with qualified professionals when making such a monumental decision, and it is always good to be prepared, this is only my humble opinion....
I am happy that I was given the opportunity to live.
There's no way to know how someone may have chosen differently. Perhaps, if my parents knew there was a high risk of passing on illness that would cause daily suffering for their child, maybe they may have decided against having me.
What a shame that would have been!
I'm not saying it's easy. I'm not saying that anyone should ignore the opinions of physicians and warnings from others...
I am simply saying that I have several difficult illnesses, some of which are hereditary, but I was given the opportunity to live... And my life is truly amazing - despite the struggles.
So, Mommy-To-Be, if you have done your research, if you are prepared to ignore the judgement of others, if you are prepared to worry and stress even more about your child, if you are ready to love and support that child and help him/her to deal with possible chronic illness, then I support you and hope that he/she has as much of an incredible life as I have had so far.
The opportunity to live is the most meaningful gift.
Happy Mother's Day Mom.
:)
P.S. - don't worry Dad, you are just as amazing and I am just as thankful to you.
💙💚