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HI, I am Patty Alcala and my blog is named ‘I Am Not Sick Boy’. It will provide some answers for those parents and loved ones who are caring for their chronically ill child. I am a Physician Assistant with many years of medical experience in my background. But, nothing could have prepared me for the confusion and frustration that was ahead for me when my youngest child, Alex, was born with varied chronic problems. It is my intention to help you get through the web of insurance, hospitals and doctors so you can get down to your real job: Taking care of your children.

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    • I am so sorry for you. It is not easy being a child with an illness. It does effect the whole family, but I assure you that you are the one who is going through it and needs the attention right now. I would love to talk to you or your mom any time. I have more than life experience with my own son, I have a lot of medical experience. I may be able to help.

      Liked by 1 person

      • I think the issue is she feels guilty lots of the time, you know she talked about how it her fault because she was unable to have children and she when through several treatments before she had me, the other thing is she has frustration over the entire situation

        Liked by 1 person

      • It is not unusual for a parent to have feelings of guilt. But, I am sure that you know that it is not her fault. And having a child with complicated medical issues is so frustrating. There is not way for a mom to fix it. There is no magic wand to make it better. Maybe you could tell her that you appreciate everything she has done and that you know she has always been on your side. You also need to know that you are perfect just the way you are. You are not a project to fix. I saw that you like working on old cars. You are not one of those cars. I know that sometimes you don’t feel like that. But it is true!

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      • I can tell some days she so frustrated with it, she is frustrated that she can’t do anything to fix it, that the doctor usually give her the old “oh he can do everything like normal boy” but then things don’t go so well.
        And I know she afraid that if anything were to happen to her, I be alone. That is one thing she is dearly afraid of and I’m too to a point.
        Ah yes, I think I slowly starting feeling that way around five years ago when felt discarded after a struggle for someone to come to the hospital after bad case of lung infection, so it more of a person feeling with the old cars, I relate to them.

        Liked by 2 people

  1. Hi Patty. Just stopping by to say thanks for the follow. I love how you are honouring your son with this site, and sharing this information in an accessible way for families who really need it. Best wishes, Al x

    Liked by 1 person

  2. Great premise for a blog, Patty.🙂 My youngest son, also an Alex, has many medical issues as well. I’m happy that I live in Canada, where insurance isn’t an issue, but the number of doctors and concerns alone can be overwhelming!
    So nice to meet you!😀

    Liked by 4 people

  3. Followed your blog because I guess I am one of those children you speak of here, though now I’m an adult but I was born with Cerebral Palsy which is something I blog about often. What does your child have, if you don’t mind me asking?

    Liked by 3 people

  4. Heartfelt words of love and caring.Our son ,had a heart open surgery when he was 11 months, we walked the path of patience and prayer and the Lord answered our prayers ,our son now have 3 kids and a high school teacher..Thank you for following my blog.Pleasure to read your posts.Jaalal

    Liked by 5 people

  5. It is a wonderful thing you do to help others. I have a fiend in Canada who started a similar journey for her child “chromosome 22 Central” and has been a lifeline and such a help to many. That is how we became friends. I started to foster a special needs medically fragile angel who we eventually found had a genetic disorder of 11 and 19. No other literature was ever done on anyone else at the time. He lived to be 11 although we were always told he would live 6 mths then another 6 mths, that he would just be a vegetable but they were wrong. He was about the age of a 3 year old, non-verbal, g-tube feed, seizure disorder, non-walker but he had an awesome belly laugh. Every time in hospital I prayed “Please don’t take him yet not this time”. Eventually he died of complications of pancreatitis and we feel truly blessed to have had him in our lives. We did not have a lot of the problems of getting medical help but working within the CAS (children’s Aid Society) was sometimes a struggle. My friend would always ask me “Why would you chose to put yourself in a position to care for a child with all these problem?” My answer was “I didn’t know about the problems that we would have to deal with and then when we did, it was too late WE LOVED HIM: Love is what kept him happy and alive.

    Liked by 3 people

    • Hi Donna, I was just rereading your post here, and I can’t believe that I didn’t respond to it. You are obviously a very special person and you gave your angel many extra years because of your love and attention to him. The professionals don’t take into consideration how much difference it makes to be in that kind of an environment. We are both so blessed to have had such wonderful beautiful sons in our lives. Thank you for sharing your story. It touched my heart.

      Liked by 2 people

  6. My heart goes out to you. Like your experience, my previous career as a psychothers post to children and adolescents gave me tools that helped me to mother a once challenging son, yet I still found it overwhelming. At one point he missed 1/3 of his school classes due to chronic and severe migraines.

    Liked by 4 people

      • Schools don’t get paid unless kids show up. The day after my son received an award for being one of two children with straight A’s, we were in the principal’s office regarding his absences. Thankfully, the principal acknowledged that we were doing our best by seeking medical care for his migraines.

        Liked by 4 people

  7. Hi Patty,
    Thank you for visiting my blog and I look forward to reading yours and will no doubt be referring people in the real world to it. I have an auto-immune disease which attacks my muscles and it’s taken me into the Muscular Dystrophy community. Love and blessings,
    Rowena

    Liked by 4 people

  8. I applaud your courage and wish it had been there when I was on that path. My daughter is gone. Her battle intense albeit brief. She died just before her second birthday. It was a journey we traveled alone. Thanks to you, many others will not be alone.

    Thank you for choosing to follow one of my blogs. I hope you will continue to enjoy the posts. If you ever see my other blog, there are poems about the loss but the most poignant and healing was titled: And The Rain Fell – https://poetryphotosandmusingsohmy.wordpress.com/2012/05/26/and-the-rain-fell/

    Léa

    Liked by 4 people

  9. Hello. Thank you for turning your experience into wisdom for other people. Whether we are managing a chronic illness for ourselves or caregivers for people we love, we are stronger when we share who
    we are and what we’ve learned.

    Liked by 4 people

  10. Hi I also came across your you through blogging 201. I am an adult living with chronic illness amongst other health problems that severely restrict my mobility, and I have Facebook friends that are parents of children going through similar things so your blog will help me pass on the correct info to them as I don’t know if things are different for a child as I had no health issues as a child so your blog is really interesting for me. maybe if you have a chance to have a look at my blog you can find it here – http://vickyandherdogs.wordpress.com I have started following you now and if you like my blog you might follow me back?

    Liked by 7 people

  11. Hi there, I came across your blog through Blogging 201. I am very interested in parenting issues, so am now a new follower. One of the things I blog about myself is parenting, although from a different perspective. I hope you’ll visit my blog, too, and maybe will follow it back (if you find it interesting enough).🙂

    Liked by 5 people

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