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Posted on 8. November 2012

Leave Worry for Another Day

By Jessica Leigh Johnson

As the mother of three boys with X-linked agammaglobulinemia, I certainly do my fair share of worrying. And as hard as I try to keep a positive outlook on the future, I have learned the hard way that things don’t always work out the way we plan. Losing my 9-month-old son, Ethan, to a common cold virus taught me that lesson; and for some reason, I just can’t undo the damage that was done to my already less-than-optimistic approach to life.

So now I tackle the job of parenting primary immune deficient children as a control-freak. I figure it’s my job as their mother to keep them healthy. I stick to my boys like a mosquito to a streetlamp, following their every move, making sure they wash their hands after using the restroom, before they eat and anytime they touch … well, anything.

But what will I do when they’re older? Things certainly can’t remain the way they are now. I won’t always be around … or at least, I shouldn’t always be around. One day, I may actually have to learn to let go and let my boys grow up, take care of themselves - and that scares the living daylights out of me.

What if I send my oldest son, Andrew, goes off to college and doesn’t remember to take his antibiotics every night? What if he doesn’t feel the need to do his compression vest therapy twice a day? What if Mathew or Gavin don’t do their subcutaneous infusions once a week? Should I drive to their dorm room every Friday night and make sure they are keeping up with their strict healthcare regimen? Would it be overbearing to call them every day just to check up on them?

Maybe my best option would be to change my personality completely and just sit back, take a deep breath and tackle the future when it comes, one day at a time. After all, Gavin is only 3 years old. College is still a long way off. Besides, I have bigger things to worry about for the time being: Mathew is 5 years old and still can’t ride a two-wheeler without training wheels. Before I get too worried about what the boys will do when they’re in college, I should just focus on getting them through kindergarten, first.

Perhaps the lesson here is that parenting is always a day-by-day journey, whether your children live with chronic illness or not. Spending too much time worrying about the future can rob you of precious moments in the here and now. How have you learned to leave worry for another day?


Comments (5) -

J. Etheridge
4:51 PM on Thursday, November 08, 2012

My daughter is 14 with PIDD and I would love advice from anyone who does have teenaged children and college aged students out there.  When they do go to university- what can we do?  what do you do? what advice can we give them on dating?

2:55 AM on Saturday, November 10, 2012

You quite simply do the best you can J Etheridge.
I have PID and I don't think that living a life lived in a bubble is the way it should be lived and so I don't. I don't know how sick your daughter is but basic things like hand washing and avoiding sick people works wonders for me. My husband and his father were very sick last Christmas; for two weeks I washed my hands religiously and didn't get sick.

Linda Thornrose
2:31 PM on Saturday, November 10, 2012

Jessica, Wow!  You impress me...you already have your answers in your last paragraph.  I have CVID, not diagnosed until I was 56 when I started IVIG...you have three boys with PIDD.  God bless you...what a wonderful mother you are.  God has given you an extra dose of strength, love and tenacity because he gave you three special boys to care for, and He knows you can do it!  You go, girl!!

I shall never get down in the dumps...I will just think of you, your courage and commitment; and the wise words you shared.  Thank you from my heart.

Linda T
6:45 AM on Monday, November 12, 2012

I totally agree with Jackie...unless you have the most severe form of CVID, you shouldn't live in a bubble.  Sometimes, I think the IVIG has so many antibodies, that I have more protection than my husband and elderly mother!  Of course, lots of handwashing, avoiding those who are sick when possible, keeping a mask in my purse to wear in public if I am around sick folks or traveling on a plane, etc.  I don't tempt fate, try to avoid going to hospitals and so on.  I am blessed to have my IVIG treatments through home care, so that is a big plus!!  Just be aware, be careful and be practical, but enjoy every opportunity you can to enjoy your life.  I am thankful every day for IVIG and what it enables me to do.  I am alive, even after TB and Hepatitis A!!!  

11:17 AM on Monday, November 03, 2014

Greetings Ms. Johnson,
I am sorry to hear you lost a Child.  I lost our first son in a similar way. He would have been 32 years old.  I choose to celebrate Gabriel John's life otherwise I get very sad.
I have Common Variable Immune Deficiency and I am new to this blog.
My advice is not to worry about "what if".  "What if's" may never happen. Worry is useless, it doesn't provide answers or prepare you for anything, it just paralyzes you with fear.
I would type a schedule for the boys and post it for them as a reminder of what they need to do to stay healthy while away at College.  There are also several Colleges online now a days which would allow your Son's to live with you until they graduate. The technology we have now compared to when I was in College offers us with immune disorders not only greater quality of life but greater control over our lives. We can talk, text or skip on line, go to school and college on line. We can shop on line and even have grocerys delivered. This is all very helpful when a person feels sick, is trying to avoid getting sick or recovering from side effects of therapy. Not all people want to live as secluded as my family and I and some only do so temporarily. The main thing is to live a meaningful high quality of life the way you want to live it, be happy what ever way that is, weather it's being out in the world and taking common sense precautions to avoid being sick or living more secluded as my family and I do. There is no right or wrong way. You sound like a very good loving Mother.  I have lived both ways. When I was younger & healthier I went to College, worked, lived on campus got married and had two normal healthy beautiful boys. Now that I am less healthy,& over 35 years older, I take common sense precautions for me to give me a healthier state of life which for me is a more secluded life, doing more things on line.

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