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Going with my Gut

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http://eachsecondmatters.files.wordpress.com/2013/03/dch.jpg”>DCH

“The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.”
Albert Einstein

It has been a while since I sat down and wrote on my blog. It is due to the demands of motherhood taking over my every waking second. But I realized that I missed writing as it is a cathartic process for me and gives people a window into this crazy thing we call life.

The entire year of 2013, the whole 2 1//2 months of it have been filled with hospitals and doctors and medical tests for my snowflake. It has been exhausting. I thought I already knew the definition of exhausting just parenting a child with a mental impairment, autism, severe short term memory loss and severe auditory processing disorder. But, it appears I hadn’t yet understood true exhaustion. I think adding chronically ill to all the other issues will make the full definition of full on exhaustion.

I don’t know what brought all of this on. I have no idea what is going on with my child. It is extremely hard when she cannot accurately express what she is feeling because of her language delay and processing delay. The thing is, I believe my child (usually). She has a very, very hard time expressing her needs and things that hurt or when she does not feel well. So, when she does express pain or discomfort, which is not often, I pay attention.

About 2 months ago, I noticed she was very, very tired, asking to go to bed early and sleeping every time she got a chance. She began to express more discomfort that involved practically every symptom from head to toe. It has been very baffling. The most baffling of all complaints was that her “eye was blurry” and she was dizzy. I had gotten her eyes checked for new glasses and honestly, I thought she was just anxious for her new glasses and was expressing what she processed about the eye doctor saying her left eye needed more correction that the right eye. So, I was frustrated with her constant expression that her eye was blurry. The other thing she kept saying that I couldn’t figure out, still can’t, is that she was dizzy. She would say this and say that she felt like she was tipping over, yet she had few balance checks and for the most part had no trouble walking. Honestly, I was frustrated. She had constant headaches, dizziness, problems with her eyes, her stomach hurt and she was having spells where she would be very nauseous and her stomach would hurt really bad, her legs would hurt and so on. It became very overwhelming. I got nowhere at the local ER where I took her when she started sleeping 20 out of 24 hours, her speech seemed to be very slow and the headache and dizziness and eye blurriness all combined and became very alarming and the doctor-on-call told me to take her in. The ER doctors that attended her needed some serious schooling in handling children with special needs. They refused to listen to me when I told them of her delays and impairments and when she could not answer some questions about time, an elusive concept for her, they said they couldn’t help her. I mean really. How do they help infants who cannot talk and tell them what they need to know or otherwise handicapped individuals? I was steaming mad. I contacted her neurologist and told her of the issues we were having and the neurologist wanted us to make the trip to Detroit Children’s Hospital for a long term EEG in the event that my snowflake was having “sub-clinical seizures” which are seizures that can only be seen on the EEG. But this time instead of just having the EEG, they were admitting her to the floor. It turned out not to be sub-clinical seizures. She was still having seizure activity even on all the anti-seizure meds, but no sub-clinical seizures. I actually, although very nervous, was eagerly anticipating that we would get a solution to her problems. Instead, it was the beginning of what I would hear again and again like a broken record. I was told things such as “ignore it and it will go away” or “we cannot help her because she isn’t able to tell us accurately what she is experiencing,” or “perhaps it is all psychological” and so on. These statements infuriated me. In fact they still boil my blood. I know my girl. Do I have doubts in my head sometimes? Sure I do. Have I thrown all these statements out without consideration? No. But, if anyone knows their child, I know my snowflake. She is different. She is unique and she does nothing the easy way. I mean, come on. It has taken me over two months to figure out that sometimes what she is saying is delayed processing. It isn’t that it is happening right at the time she says it, but that it has happened recently and bothered her. I am not happy that it has taken me so long even to figure that out. We got no answers at Detroit Children’s Hospital. None! We were dismissed as though we were just all crazy. I was heartbroken, exhausted and frustrated. I had my moments where I questioned everything. I had her psychiatrist screen her for depression. But in my gut, I still believed my little snowflake. I couldn’t shake the feeling that something was really wrong. Fast forward several weeks. We have had lots of blood work, other testing and the only thing that has shown up was mononucleosis and strep throat. The only reason we got those diagnosis’ were because I strongly requested the doctor do the test even though there was not a lot to back up my theory other than my gut feelings. Guess what? My gut was right. I don’t know when I am going to stop second guessing my intuition and go with it. That would sure save me some grief.

A week ago, my snowflake had some serious falls. Whether they were seizures or falls from dizziness, we do not know. All we know is that she was very banged up and missed being seriously injured. The doctor ordered a wheelchair because we do not know what is happening and we do not want her to seriously injure herself, especially her head. However, the insurance won’t pay for it. So, now I have to worry about a out-of-the-blue fall and serious injury. Having a lengthy conversation with her pediatrician this week left me with even more questions than answers. She, also, insinuated that perhaps this was psychological. She even went as far as to suggest that my girl fell on purpose. Some of the things she said irritated me because I KNOW my child and I know what her capabilities are and what was suggested truly is outside of her capabilities, other things just left me with questions in my head.

Then there is me loosing it. My failing to listen to my intuition. Me failing to be compassionate. Me failing to connect the dots myself. She said she had a headache, but following behavior indicated she most certainly did not have a headache. I got angry. I forgot reason, I forgot that I KNOW my girl and I forgot her processing ability. We had a serious discussion about lying. Later, on further reflection, I figured out she wasn’t lying intentionally. She wasn’t even lying. She was just processing slow. Her head had hurt. It was just forgot. You cannot even imagine how many times I have cursed myself for how I responded that day. There is a payment for my reaction. She doesn’t want to or know how to tell me how she feels because she is afraid of upsetting me. She cannot understand why I responded the way I did when she said she had a headache and she clearly didn’t. So now I have made a huge mess of an already bewildering mix of a mess.

I am so mad at myself. I am mad at letting other people and physicians get under my skin and in my head and make me second guess and ignore my gut. But now I have created a bit more of a problem. If she has withdrawn from telling me what is wrong, I have to go back to my intuition and constantly watching her behavior and her attitudes to determine if she is feeling bad of good or so-so. Intuition is a “forgotten gift” as Einstein stated. I need to keep moving forward and getting these things solved for my kiddo so that she can be feeling back to herself. I cannot ever think of a time where my intuition steered me wrong and I don’t think it will start now. Something is wrong and we will solve it. It may take time and it may take some persistence, but we will get there.



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