Friday, May 25, 2012

Screaming on the inside

I try to avoid these blogs but I have felt so out of sorts and emotionally drained that I figured this would be my best outlet. I am not trying to be a martyr or the lady who can do it all. I am simply me, one woman, one mom, one wife, one friend, one person. I can do only as much as I can do and then I slowly feel myself hitting a walk, reaching a breaking point and just want to scream.

This week has been full of very informative stuff. I call it stuff because to me right now that is all it is to me. Each time I speak with a doctor or therapist it seems that something more is added to our list! I call it stuff because nothing seems real anymore and that maybe if I just try hard enough this will all go away and we can go back to where we were about 2 months ago. Of course I am sure we just jump back 2 months ago and I would be saying why can't we just figure this out and get him help therefore it would just be some vicious cycle.

Wednesday I was given a lot of information. I have spent that time since then working and digesting that information given to me. Pondering over the road blocks that had been put in the way of the path to get H the help he needs. I guess I was being overly optimistic in assuming that this would be an easy process. I call a few therapists and doctors and poof all the appointments and sessions would be booked and taken care of with out a hitch. Ok everyone can stop laughing now. It's not like I do this all on a daily basis and have a overwhelming experience in doing this. I have always been on the other end of this. Telling parents it will be ok and that these services are going to do what the can to help their child. I am thankful for the the few that have been supportive and encouraging during this.

I have noticed that his behaviors come in waves. Lately at school he seems to be doing better. I chalk that up to the routine. He goes to school at 8 each morning and then does his day until 2pm when I pick him up and call it a day. I will gladly take him having great days at school over the what it has been. Once he is home however I can't keep as strict as a routine like at school. There are days that we have to go to an appointment, run an errand, or just anything else that might come up.

The last few days have been a total nightmare. We can't go anywhere without him losing his mind and just melting down. Some prime examples are on Tuesday night we go to Potosi so that Chris and I can work. Normally he is content this week he was anything but. After an hour and a half I left. It was just to much for him. I could hardly cook dinner Wednesday night and he was semi decent on the walk we later went on. Thursday however, that took the cake! From the minute I picked him up he was all out of sorts. Then again our day was not near as scheduled as it has been!! After work I went to check on my friend who is pregnant and had the stomach bug. I ended up taking her to her doctor. It was ok at first and then H started to slowly lose it. After the second time of stripping I had a feeling it was time to go! Misti's husband had arrived they had got her checked in so it was my cue to head out! And not a moment to soon. On the agenda was a fundraising dinner at a local restaurant to help some friend of ours. I assumed 2 hours of down time between events would be enough. We lasted 30 minutes! A few fits to the floor, a run through the place and then an attempt to take off out the front door was enough for me.

For the first time I left angry. I was angry because simple outings are no longer simple! To many people, to much noise or to much or to little light will set him off in a tail spin. I miss my friends, I miss being social. I didn't care that seeing my friend yesterday meant seeing her as I took her to the hospital it was just nice to have that time with another adult that I could just talk to. I hate taking him out in public but sometimes I am just that desperate to get out and be around other people. I developed a sense of resentment and it really isn't justified. H didn't ask to be born the way he is and nothing we did or didn't do caused or could have prevented this.  I was just angry because sometimes I feel very alone. I am a social creature I love to interact with others and suddenly I feel very isolated.

Today I was looking forward to spending the evening with some ladies enjoying some sweet treats and good company. A check up to see how the antibiotics worked for his lung infection and to see how the ear drops for his supposed ear infection. No ear infection, lungs sound better but now we have Strep! So much for that evening with the ladies. Now its an evening at home and a fun filled trip to Walmart on the agenda. That anger started to rise again. I swear it was like everything was against me. When do I get a break? When do I get just 1 hour to step away from my responsibilities and have some me time, some down time, some time to just relax and not worry about the household chores, the kids or any of my other responsibilities?

I finally broke down and start to cry at the doctors office. I told her while having ECI has been great and we look forward to his WTRH appointment in a few weeks but things are just getting worse. I told her that ECI wanted me to ask her for a referral to see the specialist in Lubbock. I think seeing how stressed I was made her realize this was needed. The downer to this however is it could be months before he is seen. So in about 3 weeks I should be hearing from her office and getting the ball rolling to  head out to Lubbock.

Our next obstacles to over come are switching H's insurance, getting in touch with EHS to get him registered. Since I have not gotten in touch with anyone at their office I am now assuming that sadly I will have to go to the Civic Center in July to get him registered. Oh well it could be worse. I am having to hold off on the medicaid application because the behavioral doctor in Lubbock is not taking Medicaid patients at the moment, his pulmonologist at Cooks only takes Amerigroup and his pediatrician's office takes all Medicaid plans except Amerigroup! She told me this was a common thing to do for children who have multiple doctors and have children who are more sickly. Co-pays add up, medication costs are unreal and then throw in traveling all around Texas to see doctors holy cow we are going to go broke. She did however mention that parents have gotten so stressed out by the traveling around that those that could have up and moved to the DFW area to be closer to these specialists.

For a fleeting moment the weights I thought had been lifted are now back and heavier than ever. I mean of course it makes sense that the DFW area would have everything we would need possibly under one roof. However at this moment we are in no place financially to up and move. If I had a set job lined up and a place to live it would be something to seriously consider. I am sure getting Chris' VA stuff would probably come with snags to. I am not making any decisions yet but I am just going to say this, if I happen to get an offer it would something I would consider. I love Abilene and I love my job but I am thinking we have reached a point it might not benefit my family to stay here. Gas is not cheap and having to take entire days off of work to drive all over the state is not much of an option either. I can't put a price tag on my child but I can put a stress limit on our family. We are reaching that point so it's time to really take some serious actions.

I took a drive last night and I did it solely to clear my head and not lose it. I did what ever it took to avoid the highways that lead me out of here that go straight to Dallas. I wanted to go home last night. I wanted to be around the love and comfort of my children, my family and friends. I knew if I got on that highway I would just keep on driving. I think most days we live in denial staying out here. We make excuses essentially to justify why we remain in this military town. To me this place only holds the memories of what our life once was. To Chris I assume its a way for him to still be connected and tied to a life he once had. A few have said it might be best to break away and stop the torture of hanging around a place where we feel torture and resentment daily. H is young enough to leave his friends behind and be none the wiser. Dallas has ECI, pulmonologists, behavioral pediatricians and I am sure specialized program he can attend that will meet his needs.

Staying here might be selfish. My friends here won't be here forever they are mostly military and will at some point PCS or get out of the military and move on. I can reunite with my friends back home and pick up were we left off. I can even make new friends and create new memories and a new path in our lives. I can only keep my head up and think of positive. I can only hope things can go up from here.