Hard Week....

I started this blog a few months ago to share Tucker's story...the ins and outs, ups and downs, and all the details. Well I have been leaving out a few details lately....and that's not fair to me, our family, or my devoted readers, all 5 of you;) I have read about grief, and tried to learn as much about it as I can, and one thing I have learned is that you can grieve for a child even if the child is still alive...you can grieve for what your child could have been, might have become, but for the circumstances your child has been in....but for the disability and/or medical conditions he or she has. To just say "well he is alive with me, so that is good enough" is very unrealistic, no matter how much we thought his being alive would be all we needed or wanted. I have also learned that grief comes in waves..you go through the whole denial, shock, anger, overwhelming depression, kind of acceptance, only to start back again. Really makes me feel like I'm on some insance roller coaster, which actually I am....Right when I feel like I have my feelings together, I lose it all again. Over the past 4 years, I have seen my positive attitude fade, my hope fade, my beliefs that things work out for the best...well that's slipping away as well. I have more sadness and anger in my heart than I have ever had. The people closest to me, who deal with me almost daily, never know what kind of mood I will be in or what comment or remark may really set me off. I don't like being this person....not one bit. All of this anger and general "mean ness" comes out when I am at my lowest...and I have been there this week. Tucker has very severe attention issues, that's just a fact. I have heard this from his teachers since he was 2 years old, but of course you don't diagnose a 2 year old with severe medical needs as having ADD or ADHD. We have found that as Tucker got better medically, his attention has not really improved. If you get him to actually look at you, he can learn lots of things, but out of an hour, you might get 5 minutes of him concentrating. So I have been thinking about getting an ADD/ADHD evaluation, or at least seeing what age that should be done. When we went in for his 4 year old checkup his Pediatrician said it was a good idea to get the eval done now by the psychology team there. I didn't know if they wouldn't even treat the ADD/ADHD for him since he has so many other issues, but the dr said that we want to help Tucker in any way, so helping pay better attention is a good way to help him in everything else as well. So the psychologist called me on the phone a week later, and I laid out our concerns for Tucker. During the conversation, she mentioned the words "autism" and "mentally retarded" several times. Now, we have been down the autism road, but back then Tucker was ridiculously inward...no eye contact, no speech, lots of stims....now he is progressing, but not nearly where he should be. The funny thing is (not funny haha), the more he progresses, the more weird "ticks" come out...he develops, but his development is just so weird. So the psychologists did a screening with just Chris and me, then last week I took Tucker in for a screening. Again, all I really wanted was to know if he had ADD or ADHD, because I assumed that would affect the treatment. The psychologist said that she can spot ADD or ADHD within 5 minutes.....so what about Tucker??? She said, "Well.....he's complicated...." Cue the steam coming out of my ears...and the tears threatening to stream down my face! If I hear one more "expert" tell me my child is too complicated, or that they have no idea what to do.....I really am not sure what will happen. She said she would score all of the questionairres that Chris and I filled out, meet with the whole team, and get back with me. She also recommended that we come in for further academic testing, which I agree with. I asked her if after seeing him, did she have any other concerns, such as autism or mental retardation? She said, yes she was concerned about both.....I wanted to vomit at this point, and I have not actually lost this urge yet. I know in my head and heart that our sweet boy is so different and special, he is not just a little behind other kids, he is a whole different ballgame....but to hear profressionals say it....well that's a different story....when they say it, it could really be true. She also said that his mito testing should bring valuable information out about his case, information that could explain autistic characteristics and mental retardation. (We have been waiting for these results for 6 weeks now, we just got our appointment date of July 27th.) So I think at this point I was just stunned. I thanked her, took Tucker home, and cried my eyes out. I think in the back of my mind, I had convinced myself the mito testing would reveal nothing....which really makes no sense, because you don't subject your kid to all of this testing for no reason. I just feel like if the mito testing comes back that he has any type of mitochondrial disorder or a metabolic problem, then again...it is real....it is not just a few quirks that we have noticed in our son...it is real profressionals telling us what is going on is not right and not normal. I think really I am just very tired. I am tired of dealing with a lot of this, and I am very tired of waiting. We began the genetic/metabolic testing on June 1, 2009, and here we are on July 10, 2010...still waiting. We have ruled out many, many terrible illnesses and conditions, but this waiting is killing me. It really wears us all down, and Chris and I often snap at eachother for no other reason than that we are stressed out. We have also had some wonderful times this week, which I will blog about later....amazingly, as we go through all this, life goes on around us! Who knew, right? So as life goes on, we celebrate weddings, births, and birthdays, and we are truly happy for our family members, but our "monster" is always present in our house and in our minds. This week, that monster has just been a little bigger, and a little louder....I don't see it going away anytime soon:(