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    • #31938
      Colleen Steele

      When my son was diagnosed with PH at the age of 8 his doctor advised us to try and continue to raise him as we were – discipline, school, maintain friendships, etc.. Basically, wherever we could maintain a sense of normalcy, try and do it.

      We made a good effort to raise Cullen the same way we were our other son but realistically, there were things we needed to change. I addressed these things in my recent column (Link Below). But really, I think some of the things I mention could apply to adult PH patients as well. PH changes things, there is no way around it.

      If you are or have raised a child who has PH, what changes did you make while raising them. If you are a parent who has PH and raising children, how has the disease affected your parenting?

      Helpful Tips I Learned While Raising a Child With PH

    • #31952
      Jen Cueva

      As I read this one, @colleensteele, I was tearful and emotional. This touched on so many different emotions for me.

      One, because I feel like I know Cullen, my heart broke as I thought about him and being so young. Wow!

      My heart aches for you and Brian, as I know this was challenging from a parent’s perspective.

      As an adult with PH, it makes me feel fortunate that I did have KK early. If not, I may have waited and not had her.

      PH did change some of my parenting ways. I know I often thought that she missed out when I was sick, and we could not take her places. So, I would do things that bent my rules a bit when I felt guilty for her missing out.

      Similar to what you shared, she was grounded at times, and she had planned something with friends. I allowed her to go and enjoy that time with her friends.

      Despite any broken or bent rules, I have to say, our now adult children are exceptional, mature adults. And, we all survived as parents, right?

      Thanks, @colleensteele, for sharing so much of your life to enlighten us and allowing us into your lives. I love you bunches.

      • #31953
        Colleen Steele

        @jenc if you haven’t covered it already, what you just shared would make a column topic.

        I must say, our kids really did grow into awesome adults. PH did not ruin them. It may have changed the routine and plans a bit but it was all survivable. It sounds corny but love was more powerful than the PH.

        • #31963
          Jen Cueva

          Hi @colleensteele, I did write a little about this in an early column. I could expand on this a bit more. You always have such great ideas! But I did not focus on parenting, so that may be an idea later thanks.

          It sounds corny, but love was more powerful than the PH.

          I love this, corny or not, it is true. Additionally, we are survived and are here to tell our stories.

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