The Phrase a "new normal"

For all those who read ( or stalk) this blog I am sure they are sick and tired of me telling of our plight with our Little dude. Well, I am going to explain a few things that I have really thought a lot about.

I have never had any other child ( other than Tyler) in my whole life ( duh!!) so there are somethings I never got to experience. Although I have watched from afar and seen and helped in many situation it was never first hand information. When I had Tyler I knew I was "missing" things. I did experience labor. 2 days worth to be exact. I never once pushed to get him out. I did breastfeed but not once did I do it WITH Tyler but always with a pump. I pumped religiously and never got out more than 2 ounces at a time. I was on every milk increasing drug and herbal remedy known to man ( and smelled like syrup for months) but never got to experience "that." I didn't take a baby home with me. I didn't get a fat baby. I didn't get a big belly, I didn't get to complain about being pregnant ( a HUGE pet peeve of mine so don't do it if you don't want to hear a LARGE piece of my mind) The list of didn't get to do's goes on. I know I was jipped. I know I was ripped off if you will.

When we came home I was under the impression we would be Normal. That we would be just fine and he would grow and be a normal kid. BOY was I wrong. We had 3 Doc appointments a week. Then it went to weekly weight checks. We had therapy, specialists and then of course when we were settling into the routine of these appointment to what I Thought was my " new normal" something would happen. We had surgery, then surgery again, then screaming for a month and then surgery again. There was no calls from "friends", sisters or anything to go out and do normal things because we weren't " normal." All I knew was what we were doing.

Fast forward to year number one. After his birthday we sailed pretty uneventful until Feb of this year. Due to RSV season LAST year we were still stuck inside. I was in a basement apartment that had a window, with little light and was small and cramped and yet I was supported by Dallas and no one thought twice about us being stuck there ALL the time. I am sure people thought we were paranoid about germs and what not but it was very lonely. We still has weekly appointments for his weight and I looked forward to talking to his nurse on the phone. So we saw a "new normal."

After his last surgery, I had a major break down in the hospital and had to have someone come and stay with Tyler one night and actually it was more of a morning. I had a migraine, he wasn't sleeping, I was sick to my stomach and I had to get out of that room. Off that floor.. gone.. somewhere else! D's mom came up and took him and then D went up the next day and luckily we were released because I couldn't handle that place for one more day. The new normal there was lonely. VERY lonely. No one called, no one visited, no one stopped by other than Brooke and Steph which was so much more appreciated than life.. but I saw Nicky so I could get food. I never felt very supported through the trials we had.

We moved in February. It was less than one month post op with a total skull reconstruction. Ty had and has nightmares after every hospital stay. He had no house while we were moving. It was hard. Now we have settled into a routine and we have a new normal... but do we.

Our week consists of Foundation for blind children, OT, PT and a eye therapist. So 4 days a week we have some person in our home for Tyler. We will be adding Speech when I find one and possibly getting out of home therapy for a while. So add that to my list!! We see a specialist for his shunt every few months, we have a eye specialist that we see right now every month, a pediatrician and now adding a neurologist and and Orthotic speacilist. I work 34 hours a week and Dallas works. We have no person to pawn our amazing child off to and we support ourselves. We don't have any government support and we haven't been approved for long term care as of yet. So we are left high and dry. We are left with a new normal.

*******disclaimer in here******** I am not complaining that we don't have family around. We chose to move and we have and are having a the time of our life and have made a wonderful life for our self.**********

So.. a new normal.. Yes.. there is something that you get use to. But in order to be realistic about what you face you have to realize that for every new season there is a change. A change that causes a whirlwind of emotions. Ones that are lonely, frustrated, scared and alone. And also ones of renewed enthusiasm about what is to come. Support needs to be there for all of these changes. But realize that what you are experiencing NOW is not always going to be your normal. For each missed milestone or reached milestone is a new normal. It will never be the same again.


I have accepted this as my life. I have accepted that this is how things are for us. I know that I am doing the best I can. It doesn't take away from others not knowing, others who are cruel and others who, if they would only TRY and see it from the other side may feel the love that we do for Tyler.

So ... This is our new normal

*** stay tuned for more on Tyler and his castings at the Ortho today... ****