Sunday, July 1, 2012

Escaping Denial

I have read that when a family finds out they will be caring for a child with some sort of life altering illness or special need it is typical to experience the grieving process you experience when you loose a loved one. I never believed it and found it to be quiet hokey as I have dealt with death of two loved ones and before now could never see the two in comparison. In fact I felt it to almost be an insult to those who have lost loved ones to have this be compared as the same. I felt this way until recently however. Again this has still been a learning and growing experience for our family so I am taking this as a lesson learned.

Lately now I find myself thinking that " Ok this was real eye opening and now I want my life back" or that " I am so super paranoid and over reacting that this is all in my head and not really our life now." According to ECI I am still in the denial stage of H's new life. I have to say yesterday was the hardest day of my denial stage I think I even hit on some anger while I as at it. I awoke to hearing the sounds of my children in the other room laughing. It is one of the best sounds a parent could ever wake up to. The morning seemed so normal so "typical" it left me thinking "How could I possibly have a child with these problems his doctor and therapist say he has." At that moment I sat up and said " Today H is normal and I don't want us to endure this anymore. It is all in my head nothing is wrong and he will be treated just like any other boy his age." In my delusional world I think I was trying to double up and claim that as acceptance while still living in a world of denial. How could this child so smart, so perfect, so well loved be the way he is? Who did I piss off to have this happen. Hey throwing in some self pity in my mind seemed to be the only way to race through this so called "grieving process".

Suddenly I snapped back into reality when I hear the girls trying to get H down from his dresser, after biting Ella and running around the room. Something triggered him to have an episode and go nuts. Probably all the activity and noise. It was at that moment that it hit me. This is my life, this is my new normal and most importantly this is H's new normal and his new life. So this is what that whole grieving thing means. We grieve the loss of what normal life we think our child might lead. We don't necessarily bury it or have a service for it's loss like we do that beloved family member, instead we have to let go of that life we thought our child was going to have and learn to embrace this new life given to us. There is a reason, some unknown deep reason, that we have been given this new life. We could spend this time wallowed in self pity and they why me, whoa is me, I am all alone, or we can suck it up move forward learn our new life, embrace it and accept it and more forward.

I am vowing to take each challenge and learn from it and go forward. We will not let H sit at home couped up hiding from life. We are going to submerge him in daily life experiences and helping him learn to cope. He is teaching is much more I feel than we are teaching him at this point. Each day we learn just a bit more on what makes him tick. Some days we cheer successes and some days we lick our wounds and learn from what went wrong. Much like last night on our Walmart run. Sometimes I forget for a split second what we are dealing with and it is like that kid can hone in on it and take advantage of that lapse of judgement. I tell you this kid is way to smart.

A quick recap of our disastrous Wally World run.... We decide to take the younger two to the store while leaving the older two at home. We got what we needed and figured with 3 sets of eyes and hands we would be good to go. It actually wasn't a total disaster until the end of the shopping trip. Usually now when we hit the check out line it triggers H to get very anxious and antsy. He wants out of the cart and if he does not its a serious meltdown. I think  he knows the next step is to leave so he decides to cut out the middle man and say LETS GO! The guy bagging was going as fast as his teenage hands would allow him but he was not quick enough for our critic! I put H down next to Ella, turned my back to place a few items in the 2nd cart we had just retrieved. It was no longer than a few seconds of grabbing a bag and placing it into the cart that it happened. I looked up and both of the kids were gone!

I can only assume that H took advantage of my lack of attention and bolted! I had no idea which way he went. We were close to an exit so it made my stomach just knot! I ran to the door and nothing. I looked up the big isle saw nothing. I hurried and doubled back to the other exit and figured at this point he would have gone out it because I went the other way. A lady asked if I walked by if I was looking for two kids. I couldn't give a verbal response just an emphatic nod of my head and my eyes forward. Apparently she did not like that I did not say thank you and screamed out as I blew past " THANK YOU!" In a snarky tone. It is then I felt the tears coming down my face. I prayed, I prayed for the first time in a long time. I begged that my baby did not make it out that door, I begged and prayed that he was in Ella's line of sight and that she had him some where safe. Granted she is 7 but she knows that he can't walk out that door without us. I swear this exit is not normally this far away but today it was. I got to the exit I looked out and nothing. My stomach sank. It was at that moment I saw the most darling head of red hair followed by a plead of "Please stop Hunter! That is not ok!" I could breathe now. My little girl diverted him from an exit and had him running up the clothing/ jewelry isle!

 I scooped him up. Ella had no idea he had no idea he would not stop despite his name being called and her pleading. He was in his own world. I hugged him tight as we walked back to Chris. I realized that we are not as prepared to handle some of these things as we had thought. My heart was racing and H had no real expression on his face. Of course he had no idea what he did was not ok and that his mom was thinking the worst possible thoughts ever. It was this event that has Chris and I discussing what sort of help we really need to get for H. As of last night the thought of a special dog is now on the table. Does not mean we will get one but that we want to see how effective they are if it is a good match and how it would all work. I have two friends that have or are in the process of receiving  one of these special dogs. I know just what I have been told and what I am gathering from the net.

A service dog is not cheap and it is quiet a process to obtain. We are still working to get the lap pad, vest and the oral stimulation toys. We are still working on getting therapy covered. We have a meeting with SSI Thursday. This will be, from what I gather, a very long meeting. This would give H money to put towards medical expenses each month. We have a phone interview on the 11th for CHIP, SNAP and other aide. I will get the final info tomorrow from CCPO on assistance with Child Care. A few have asked would we fund-raise. Honestly I am not sure. I love helping others with theirs but I am not sure I feel comfortable taking that route. I hate asking for money for simple things I can't put myself in that place now to ask for money to help for things like this. I am however having discussions with friends who have done them or hosted them to see what it entails, how it has worked, their success rate etc.

I love finding more and more support from people around me. I have found it so comforting and not feeling so alone when I meet someone in the same boat. Even if it is just off a support page it still gives me hope and motivates me more. Support and encouragement plays such a huge factor in all of this. I go to bed tonight feeling rejuvenated and encouraged. I feel this new sense of hope for H. That is all I can do is hope that I can give H everything he needs to thrive and succeed.