1. Nerys M. Baiges says:

    How courageous! Mr. Briceno, first, blessings to you, your wife and daughter. It is hard when you are a caregiver of a person who lives with a life threatening illness, condition or complications. I raised a daughter, Jullianne, who was born with Achondroplasia. However, due to some medication, and possibly medical negligence on behalf of her doctors, and others, she may have been born with congenital hydrocephalus which had never been shunted. How she is alive is a mystery to me. Everyday, I am expecting a call that she may have passed in her sleep, which is when the pressure in the brain goes up. She lives with her boyfriend and her 3 year old son. In the same token and while her problems and life threatening complications make come primarily from the brain, her son, born with Achondroplasia as well, lives with Restrictive Lung Disease, which is also a life threatening complication for this population. Caring for the two is complicated because between the two of them they have over 20 doctors, therapists and other workers. I quit trying to keep a normal job and I know more about their medical complications than anything else, including my career as a Licensed Marriage and Family Therapist. I lost my marriage of 10 years, had to relocate across the Country because their condition is delicate and complicated. I was not able to spend time with friends and older son in a normal relationship since my daughter’s illness more times than often, took precedence over anything else or anyone. Living with children like my Jullianne and my grandson, Julian is like walking on eggshells or riding a wild roller coaster, never knowing when God will take them. Sometimes, I questioned the existence of a kind, loving God. Especially when on a week, the three of us where in three different hospitals at the same time. Life is short but for some unknown reason we find ourselves scraping for money so we can do something fun to get our minds off . I tell you, our system and our world is very much not equipped for families like mine. I have been the sole provider of my daughter’s care, making me a case manager, advocate, tutor, supporter and so forth. In 2017, I develop breast cancer and ever since, I have been wondering what is going to happen to her, my grandson, when I die. Talking about burned out, I blame the system and other factors. Have become more conscientious of the fact only rich people have the opportunity to survive this system. I even thought about relocating to Canada so my daughter could have universal healthcare regardless of my income. Today, I would have been better off there or England, where there is universal healthcare and a supplemental health insurance. Instead, we are here in the US struggling in a system not so sympathetic to parents like me and my parents like my daughter where both are Disabled. What will happen, I do not know but it is sad because I worked very hard to get her 0laces and in 2014 something happened to her that changed her life and my life. However, I have learned to accept that life is what it is and that if I die, oh, well. Hopefully, God will be better to them my daughter, Jullianne and grandson, Julian, than he was with me. If I get sick with cancer again, my next step is death with dignity so I am not a burden to them. God Bless You and hang in there, maybe a cure for HD might be under way. In the case of my daughter and grandson, their anatomy is at times an enemy. Amen.

    • Carlos Briceño says:

      What you shared is an amazing testimony of love. You and your family’s suffering is intense, and I salute how well you have done in helping your daughter and her family. I’m so sorry to hear you have dealt with cancer, as that disease is not an easy one to deal with and overcome. As for suffering, here is a video that has helped me to understand why God allows such horrible suffering among people: https://reallifecatholic.com/video/why-does-god-let-us-suffer/. I hope it inspires you to have renewed faith in Him and brings you some peace. I agree that this country does not do well in terms of helping people, like you and your family, when dealing with all the health issues you all have. Please know that your love for your family is an inspiration for me and that you all will be in my prayers. One day at a time. That’s all we can do.

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