Not normal

Who would have ever thought that someone telling you that something about your child is not normal would be such a relief? I never would have. Korbin has had a headbanging issue for months and months now probably closer to a year. Up until now, I have been brushes off by pretty much everyone being told that it is normal for his age. What part of a child banging his head on things to the point that there are knots and bruises is normal? He has also damaged a tooth during one of his "fits". Still, it was "normal". I decided to talk to the OT again the other day about it. Of course she has never seen him do it so she must not have realized he was still doing it although he has a constant bruise on his forehead. For the first time someone told me that no, it is no longer normal. FINALLY!!!! We will be seeing the neurologist in a couple weeks so we will talk to her about it (that was the OT's suggestion). She said that it could be a number of different things. Pressure in his head, eyes or ears (which have both recently been checked and were fine) or sensory seeking. According to the OT that latter would be the worst of the 3. I assume that is because it can't just be fixed like the other things could be. So we will talk to the neurologist soon. We already had an appointment to re-establish ourselves since our current neurologist is closing her practice and we have only seen the other neuro once. It really was a relief that someone is finally listening!

We are also counting down the days until our visit to Shriners. We will see what Shriners has to say in late March. I am really hoping I am not disappointed by the visit.

Forgive

With parenting comes huge responsibility. The task of raising, loving, caring for, teaching and molding these little people and impressionable minds to one day be productive and caring members of society. This responsibility can be nothing short of overwhelming at time and is accompanied by the fear of making a mistake. No one is perfect and we all make mistakes. Our parents made mistakes, their parents made mistakes and so on and so on. Parents are not perfect. They are human with what sometimes seems like a super human job.

It is my personal opinion that mothers carry most of the responsibility on their shoulders. This isn't to say that dads don't do their fair share or carry any of the responsibility. I think moms just take it more to heart and make it personal. I also believe that although other moms can be very critical of another mom's parenting style, the biggest critic around is ourselves. Before Korbin came along, I was pretty good about chalking up my mistakes as mistakes and trying really hard to learn from them. Yes, there were times that I would be a little harder on myself if there was something I really felt I should have done differently.

Suddenly life has changed. I had a child that almost died who then went on to thrive and beat all of the odds. This child and his medical needs consume our family and life. It is a constant struggle balancing it all while still giving the other children their fair share of attention and time. During this juggle, I still find myself searching for more. More therapy, more Dr.s, more treatment, something that will make this all go away and "fix" it.

This is where the real mommy guilt sets in. I know it doesn't belong and I am working hard to get through it but it has been difficult. I constantly wonder if I am doing enough for my "big kids". My oldest is struggling in school. Is that my fault? Did I not give him enough attention and time while I have been driving all over the world to Dr.s and specialists for Korbin? We have been faced with some difficult decisions regarding my oldest son as well. What if we make the wrong decision? At this point, I am certain that I will feel guilty over either decision so does it really matter? Am I doing enough for Korbin? What if I could squeeze in an extra therapy session a week? Maybe we should cut back some expenses so we could afford to pay for the extra therapy that insurance will not cover. Am I terrible if I don't choose to do that? I worry about Korbin not walking when I know I should be thankful that he is even alive and doing as well as he is. I feel that I am failing him by worrying so much about him walking instead of just enjoying him the way he is now.

So how do you do it? How do you forgive yourself? How do you eliminate that guilt or at least minimize it? I know that I can not do it all but I just can't seem to accept the fact that I am not superwoman and can only do so much. How do you accept that you really can't change the past no matter how many times you replay things in your mind? How do you stop living by "what if's?" while still being prepared for the future? How is it so easy to praise others but so difficult to praise yourself?

My ultimate goal is to do the best that I know how to do by my kids as well as teach them that it is okay to make mistakes. Ironic I guess.

When Life Gives You Lemons

Life can be so hectic sometimes. When too much is thrown at me, I get overwhelmed and not too sure which way to turn. We have been overloaded with "stuff" these last couple weeks. My oldest child is having difficulties in school so we have been trying to take care of that while still doing or day to day with Korbin. It is so hard having to make so many decisions. Which decision is right? What if I make the wrong decision? What will be the repercussions?

We had Korbin's physiatrist appointment last week and it did nothing more than solidify my decision that Shriner's is a good way to go right now. The confusion, distrust and lack of communication between our "team" has made things nothing short of difficult. I was thrilled about the prospect of a TheraTogs suit but the physiatrist isn't sure. He thinks the therapists need to challenge Korbin more (which I totally agree on that one) and he was wondering why we ended up with SMO's instead of AFO's (SMO's are shorter braces that only go to about the ankle while AFO's go higher up the calf). When I explained to him that we had discussed AFO's but he wanted to wait and see what the orthopedic surgeon wanted and the ortho surgeon wanted SMO's. Lack of communication is infuriating!

Korbin is doing really well though. He is wanting to walk so badly. He is pushing his push toy everywhere as well as appearing like he wants to take some independent steps. I think at this point, he would probably do wonderfully in a walker but no one seems to want to do that except the physiatrist. The therapists keep telling me that they want him to have more stability so he won't fall. He has become much more stable over the last month or so so that shouldn't really be an issue. They are also concerned about his hyperextension but again, that's not a huge issue when he's standing either. They tell me they don't want him falling. Well, my problem with that is even typically developing kids fall. And they get up and do it again. Kids fall. It is what it is. I hate to keep pushing the therapists about walking and a walker. I worry (although I probably shouldn't) that they are going to think that I am wanting him to have a walker instead of giving him time to see if he will be able to walk without it. My question is at what point are we going to say a walker will improve the quality of his life? He is wanting to get down when we are out and about but many times it's not possible with him crawling. On top of that, the therapists won't give me any indication of whether they think he will even be able to walk at first without a walker. The physiatrist thinks he will need a walker to begin with (again, I agree with him on this one). I get that the therapists may want him walking on his own at first but if he doesn't start practicing, how is he ever going to learn?

We should be finding out soon when our Shriners appointment will be. I am really trying not to get my hopes too high about the visit because I tend to get disappointed when no one has a crystal ball or magic wand.