Interview With My Mom About Having 2 Children With Multiple Chronic Diseases

Myself, Amanda, & Our Mom

How long have you been dealing with children who have chronic illnesses?

28 years now

How does it affect you personally?

No one wants to see someone they love so sick.  You wish you could go through it for them, but you can’t.  It hurts to see them struggle every day to try and have a normal life.

What advice can you give to other parents with children who have chronic illnesses?

You need to stay strong and focused.  Do a lot of research and always let them know you will always be there for them.

What is your opinion on health care for these diseases? (Canada)

Clearly there isn’t enough.  The public needs to be educated so they are not so judgmental towards those who are sick.

What’s your opinion on the specialists and their lack of knowledge in these illnesses?

My daughters Crohn’s disease specialists (G.I. doctors) are very good. They do anything and everything to help them both.  They listen to the girls, which is very supportive of them.

Postural Orthostatic Tachycardia Syndrome (POTS) specialists are not as advanced as they should be.  More research needs to be done.  The public also needs to be more educated so they are aware of the severity of this disabling disease.  As well, more support groups for victims and their families are very much needed.

Any advice to the ones facing chronic illnesses?

If you are faced with a chronic illness, you need to never be afraid of asking for help.  We all need help.  You also need to do as the doctor tells you, but if you are not happy with how they are treating you, get another opinion.  You must never give up.  Push yourself, but don’t hurt yourself.  Listen to what your body is telling you.  Use any and all resources available to you, and keep your sense of humor.  Even get angry!  Do what you have to do.

6 thoughts on “Interview With My Mom About Having 2 Children With Multiple Chronic Diseases

  1. Thanks for this … And your entire blog. Really good. Helpful to know how others are coping – even parents of the chronically ill. Keep up the good work 😉

  2. I found this line “Push yourself, but don’t hurt yourself. ” good food for thought. I question the blurry line between resting for my health and not trying as hard as I could have.

  3. Thank you for this. I am a single Mom with Systemic Lupus. My 15 year old son was diagnosed with Type 1 Diabetes in September and now my 13 year old daughter has just been diagnosed with POTS. I’m upbeat and supportive when they’re looking, but cry in solitude when no one is around. I don’t know what to do – especially for my daughter. I feel as though I will hit the next doctor that tells her to drink more water and gatorade and take salt pills. I feel like saying, yes, we were told that 80 visits ago! I spend so much time seeing doctors for the 3 of us that I can’t hold down a job. I don’t know what to do…

    • *Karen, I am sorry it took some time getting back to you. I actually e-mailed your comment to my mom, so she could write you back. As the chronically ill child, what I find I need from my loved ones most, since you are not doctors and can’t fix the problem like you’d want, is just to know you are there for us! Support… and understanding of the illness as best as you can. Making that effort to understand what POTS is specifically, and can understand as best as possible, without having to re explain what it is and why we are feeling so badly for. To me, that means the world! Now for my mom’s response to you:

      You are welcome. After 30 years of marriage my husband and I divorced 10 years ago so like you I have had to go it alone and it is very hard. My mom who is 85 helps me and my girls get to their appointments as I have health issues as well. Have they offered you any support groups and has your son been sent to a dietitian?
      Pots is hard to understand what treatment if any is the best as doctors know very little about It. I research as much as I can as both of my girls have multiple illnesses.
      It is important to be strong for them but I have learned the hard way that you need to take care of you as I just had a heart attack a couple of months ago and I was very lucky that I was okay. All I kept thinking was who would take care of them and my grandson.
      I write a lot which really helps I have a counselor that I talk to on weekly basis. She has helped me a lot.. I had to quit work too as I was a retail sales manager with lots of responsibilities and long hours. Between work and all this my health got bad. There are days I just want to scream and run away but I can’t. We have to fight with doctors all the time. They just don’t get it. I like to say give your head a shake and do something to help my girls. It is so frustrating.
      I am here if you need to talk and I hope in some way I have helped. Just know that you are not alone.

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