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Posted on 8. October 2010

It Must be My Fault

By Tammie Allegro

Instantly, the thoughts in my head ran full speed ahead, full of accusations and blame. Did I drink too much soda while I was pregnant? Was I exposed to lead paint? I didn’t eat enough veggies. Maybe I just didn’t make her eat enough veggies. No, God must be mad at me for all those bratty things I’ve done in my life. There must be something that I did to cause this to happen to my little girl. As I continued to beat myself up, I also wondered, how did I miss this? There must have been signs I refused to see all along.

Why, as moms, do we instantly blame ourselves no matter what the issue is? Recently, my daughter was diagnosed with a chronic medical condition. Instead of being relieved that I had an answer about what was wrong with her, or getting angry at the world, I blamed myself. I felt this tremendous guilt for not doing enough to keep this from happening. I also felt guilty that it was happening to her and not to me.

Following the diagnosis, there were medical decisions that had to be made. My daughter has a condition that can be treated; medication is suggested, but not required. This, of course, brought up a whole new set of concerns and guilt. There are always potential side effects with medication. It is also possible the medicine will not fix her issue and could even harm her. There is no way for me to know what the future holds for my little girl. I have no way of knowing, without a doubt, what the right choice is for her. All I have are my instincts as a mother. Unfortunately, my instincts are telling me to scoop her up, run home and hide from the world. Not for a long time, just long enough to figure things out.

Then the other guilty thoughts came into play. What if I didn’t medicate her? I could be the one thing standing between my little girl and her “happily ever after.”  My issues with medication might cause her to struggle for the rest of her life. As her mother, it is my job to protect her from everything - right?

I saw this post recently on our IG Living Facebook page: “Listen to your gut regarding your child’s health. Don’t be bullied by the doc. Keep a respectful tone, but remember it’s YOUR child.”  That’s good advice I’ve taken to heart.

I finally realized I had to do what was right for her. I had to give her a chance and let her life be what it was intended to be, even if it required medical intervention. It is my job to protect her, but sometimes it is me she needs protecting from. My fears can sometimes cloud my judgment.

Of course, I had forgotten a major factor in all of this: I am a “we.”  I have a spouse who also had to be a part of this decision. It wasn’t just about me. Together we chose to medicate her. We decided to be thankful every day for strides in medicine that provide this possible solution for my daughter. We are going to appreciate the knowledge that we are not alone. She is going to fight like she always has and we are going to fight with her, and for her.

Making medical decisions for your children is never easy. How about you? Have you ever struggled with guilt or confusion when making choices about how best to treat your child’s chronic illness?


Comments (3) -

Brooke Smith
10:13 AM on Friday, October 08, 2010

I blame myself all the time!  After my son got diagnosed with CVID in February, after 3 years of fighting, I got tested too.  I have IgG1 subclass deficiency and we both have a mannose binding lectin deficiency.  My genes were the cause of him becoming immune deficient!  I have seen my son very sick at times and putting him on the medication was not a hard decision.  Putting myself on the medication was a bit harder because I am not as sick as him, but I am becoming allergic to many antibiotics.  I blame myself alot, but then I have to think I did not know in advance that I was this way and he is such a blessing for me to have, one day he will do great things!

12:51 PM on Friday, October 08, 2010

  No guilt required...While those of us who are ourselves diagnosed worry about having passed unfortunate genes along to our (now) adut children, there is nothing we can do about it.  By the time I was dx there were grandchildren to be concerned about as well.  Truth is we inherited these genes from our predecessors who in all likelihood had no idea they had a genetic disease and more that we did, at least for much of our lives.  One day at a time, one concern at a time.  Nothing we did (or failed to do) caused these dx.

Nancy Nicholas
5:43 AM on Saturday, October 09, 2010

No guilt required. I have fought illness for more than 20 years, just considering it to be normal. My GREAT NEPHEW was diagnosed with PVID about 6 years ago; I continued to be in and out of the hospital with pneumonia, MRSA and many pic-lines for antibiotics.

My niece and GREAT NEPHEW invited me to the IDF Convention at Disney World in 2009. I saw the trip as a fun vacation. However, I did sit in on some of the lectures throughout the convention and my 'red flags' were flying up! I returned to my hometown and INSISTED on an iGg test being added to my normal blood panel. Much to the doctors resistance, the test was ordered and the rest is history. I have an immune deficiency, as does my GREAT NEPHEW.

After a little research it was determined my father passed away at the age of 48 with "stomach trouble"- most likely Chrone's Disease.  Oddly enough, my own daughter was diagnosed with Chrones Disease at age 17 (2009).

Suddenly it all makes sense. I have 100 years of history of CVID in my medical history.  1)Both my father's parents died before they were 25; his mother in child birth and his dad ---per relatives, "he was a 'sickly' young man. 2) I was diagnosed in 2009. 3) My adult daughter has lived with Chrones Disease for 20 years. 4)My GREAT NEPHEW suffers from PVID.

As for guilt, there is enough to be passed around. I believe if we could all review 100 years of medical history we might see the connection. Guilt- it is only a waste of time. I strive to focus on things I am able to control.

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