Let’s Start With No “What If’s”

"The mother"
“The mother” (Photo credit: Wikipedia)

A wise woman way beyond her years said something to me today that really made me sit back and think about things a little bit different from what I’m used to thinking. This loving soul is the sorceress of my entity that exists for the faults and negatives in my life. Her words seem to weave through all the doubts in a way that is almost poetic to understand and respect. Her love and care for me and my family whispers the great possibilities that are still ahead that our troubles lives blind us from in a self-torture of what we’ve done wrong. The eyes are the window to the soul and I will tell you one thing, her eyes have so much clarity for the future she sees for us and what she wishes for in the mean time. I haven’t known her long, but her open arms and open mind have given me more strength every day I see or speak to her than the several walls that keep trying to build themselves every day.

I bring this up at this moment because I’ve been fighting back tears of fear, hurt, shame, and self-doubt on what I could have done to make things better for my oldest boy. His diagnosis came strong and knowing with a hint of such a deep measure of unsurety that I felt my heart tear piece by piece. My hands tremble with fear of whatever I touch may fall apart. The feeling of hopelessness and breath-taking moments that dance in front of my eyes of what was said and how it was put. Psychosis and Schizophrenia can be a scary thing for an adult, let alone a child. When you are 7 years old and doctors tell you that you have to take medicine and go to counseling for the voices you hear and people you see that no one else can participate in, it can be a real scary situation. To be the mother of that child and find out at the age of 12 that this brain disease is real as ever and only can be helped with medication for the rest of his life, is a whole other world.

You start to wonder what you could have done that was so wrong in his/her life that caused this extremely painful life altering event that broke reality so strong for this child. You start to sit back and go through each day or month or year in detail in your mind and take apart everything you can remember that was said or done and hope by chance, you didn’t cause this. FAS  (Fetal Alcohol Syndrome) is caused by a parent that drank while pregnant and can be helped and avoided. This is a condition that I myself carry the strong symptoms of. I have been aware of this since I was a teenager and I had a friend’s mother tell me that my brother and I both showed strong signs. I was more enlightened than mad or scared. This would make sense as to why I was the way I was. I had thinking problems, memory problems, personality issues, didn’t catch on to things very quickly, had facial imperfections, and to top it off… my mother denied it all. So I did look into and did find out that I more than likely have it, though I’ve never when through testing to find out and refuse to do so. I believe if I don’t show a paperwork trail of any illness, then the state or whoever will never have ammo to say I can’t be a mom and take my kids away.

My son on the other hand is a whole other story. His condition is biological and he may end up going through genetic studies in the next year or so to better understand his condition or disease. I couldn’t have changed anything, but the man I slept with to make a child. Then I wouldn’t have my beautiful 12-year-old boy that I have now. I love my Angel Boy!!! I know he’s got a lot of work to do, but I love him and all the issues and troubles he comes with. We are in this step by step journey together.

I do feel sometimes way down deep that if I would have never let my lovely Angel Boy go to that demon of a man regardless of the fact the law wouldn’t back me up and regardless of the fact that he was 6 foot 5 and 280 some pounds, that maybe just maybe I could have veered him away from the negative situation that brought him to where he is now. So yes, as a mother I say “what if” to myself a lot about my child. Here’s the thing though… this wise woman who I spoke of before really opened my eyes on something and I’m not sure why… but it hit me real hard.

Why do we “what if” only the negative and not the positive things that happen in our lives? Why don’t we “what if” the positive things? Challenges are what make us who we are throughout our daily ventures. Why find reasons to pour negativity on yourself for things that were obviously out of your control or meant to be? We tell or children every day that “everything happens for a reason”, but yet we secretly sit back and wonder what we’ve done wrong when they don’t turn out like we dreamed they would turn out. We secretly sit back and wonder if our children, pets, family members would be any different if “we” didn’t “do” or “say” whatever it was that we are way down deep wishing we wouldn’t have done or said. Why?

My boys aren’t perfect and frankly I’m not directly sure I would want them to be flawless and perfect. I love that each of them is their own child with their own history and their own personality. I love that each of them gives me a kiss or hug differently and each of them talks to me differently and each of them shows their love and appreciation differently. I don’t love that my oldest is in such a strong unknown world that is barely heard of or studied. I don’t like that fact that I can’t just “take it all away” for him and make him BETTER so to speak.

My Angel Boy has been diagnosed Psychotic with a severe case of Paranoid Schizophrenia. This condition is not curable, but can be helped. He is currently on medication for his symptoms to alleviate the mental pain he experiences with the auditory and visual hallucinations. This medication is not guaranteed to remove all symptoms forever, but will help most of them go away for most of the day. This being the brain disease that he has is biological and has many tests to go for further understanding.

He also has a behavioral side that he experiences displaced emotion that was caused by something severely bad that happened when he was around 6 years of age. This occurrence caused such a frantic moment in his life, he’s actually developmentally stuck at this point in his life. So when someone talks to him or explains something to him, it’s very common to think he’s being immature. He may be 12 years old in his body, but his mind is only 6.

He was first diagnosed when he was 7 years old and with many types of therapy and medication, it was controlled up to about 2 years ago almost three now. Then he started to control it on his own and got off of the medications and therapy. Now the brain disorder has returned and will continue to come and go for the rest of his life. Severity will depend on circumstance and his custom routines as well as his medications and therapy.

Both conditions are accompanied by some minor flaws in his personality which includes: OCD and Attachment Disorder. In some cases they affect each other as well.

This wonderful child of mine needs everything to be as simple as possible and full of routine. He needs everything spelled out to him slowly and repetitively so that he can see your face and lips move. When you speak to him, he needs to be kept attentive to your face and voice only. You have to make it very obvious that you are the one talking to him. His confusion may come quickly otherwise since he’s having many auditory hallucinations. My boy needs a lot of patience and time to talk to and help him figure out what his task is to do. Anything over a 6 year olds mentality needs to be repeated several times and shown several times over and over again with direct contact face to face and hand movements to help visualize what you are saying.

He’s also being tested for a Thyroid condition since his mood develops strongly around his appetite and he seems to be hungry all the time. He becomes very happy and relaxed when he has something to eat or snack on. His Psychologist has stated different snacks given or allowed throughout the day will be helpful until we find out if he does in fact have a Thyroid condition through further testing. Also take into consideration the following things:

He will be undergoing an EKG, MRI, Blood Work, and possible genetic studies to help understand his condition or disease even better. This type of diagnosis is very rare and almost unheard of for a child at the age of 7, but to carry on till 12 is simply even more challenging since there are a very few recorded cases of such children out there.

He will be on Abilify, Omega 3 Fish oil pills, Melatonin, and protein drinks and bars to help him get through this. The genetic studies are looking more down the road once we get him stable and able to handle everything better and do better in school over all.

What regret is there in all of this? I’m a mother so everything my children go through or become I firmly believe is a result of something I’ve done or said. There is a constant internal struggle telling me what I could have done or said different to make my lovely Angel Boy do better in life and give him a better chance at living a normal life. Here’s what people keep asking me… “What is normal?” I have to agree to this question regardless of the fact I don’t want to hear it. Normal meaning able to hold a job, get married, have children, move out, and grow up and experience many things throughout life.

Now I have read and researched and those adults who have the disease have had significant abilities to go through life normally and live through their challenges everyday successfully. I watch YouTube videos on the subject and find more and more people are experiencing more circumstances that come about that have to deal with the same conditions. It’s nice to know me and my boy aren’t alone sometimes. I wish there was some type of support meeting I could bring him to that he could talk to other boys or girls with the same condition or disease and know it’s OK. I wish there was an unbiased person that was an adult that could take him aside and say “I’ve been there” and “This is how I overcame this”. I wish there were other parents out there that knew what I was going through and it didn’t seem like such a struggle to explain everything we go through and what his condition or disease means to everyone that “cares” about what’s going on.

You know how hard it is to convince or explain such a severe diagnosis of a child to someone without them saying to you, “he’s just being a brat” or “he’s doing it for attention”. When you have a brain disease that shows up in diagnostic tests and you can see on paper what that test did and what it showed about the brain and then the doctor looks at you and says “it’s real”…. Then you can sit there and tell me “he’s just being a brat” or “he’s doing it for attention”. I want you to sit there and read his test reports and look at his professional psychologist and tell her that!!! You tell a woman who who’s been studying and researching and learning more and more about the condition give or take 30 years.

Then turn around and tell the child that the voices he’s hearing all the time that are screaming at him and telling him to do bad and awful things or he will die… are all fake. Tell that child that the same thing he/she has been experiencing for give or take 4 years is all made up and the doctors who have been helping him through all that … who specialize in it…. Are all made up as well. You watch the complete fear and hopelessness take over that child. You watch his world crumble right in front of you. You handle the ton of guilt and shame that child carries from he’s said or done that he doesn’t remember or understand. Doesn’t sound so great anymore does it? Calling this child a liar or a fake…

I don’t know what he’s going through, but I can watch videos and read websites and give myself all the opportunities in the world to learn about it so that I can help him go through it together. I can do everything in my power to show him, we will make it through it and we will find a way for us to live life and sooner or later hopefully fully understand what’s going on. I don’t know if it will ever be exactly understood since there aren’t many cases out there with children and the condition or disease, but the bits and pieces that they’ve come thus far…. Is much better and holds a deeper truth to the inner mind of a child with Psychosis and/or Schizophrenia.

One day and a time… let’s start with no “What if’s”!!!

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