Crazy

Well what do I say I am definitely on the verge of it.  I never thought it would be this difficult to be a stay at home mom.  I give credit to the other stay at home moms and dads that I see and meet that seem to do it with ease.  I new when I decided to have kids that it was not the right move for me to be a stay at home mom.  I have little patience and it I have lost what little remaining patience I did have about a month ago.  I guess I am going to chalk it up to the fact that my almost 5 year old son is doing all that he can do to try me.  My friends tell me that it does get better and I am just waiting for that to happen. 

But, there are days, well most days, when I can be totally at my wits end with him and he will say the funniest thing that will just make me laugh and laugh.  Here is today's story:  I was talking to my mother on the phone about Trystyn's new DAFO's (orthodics for her feet and ankles) and how I can't find shoes to fit over them without buying the specialty shoes called Hatchbacks that they make specifically for DAFO's.  See these shoes are like $60.00 and I just can't see spending that much when the doctor at the place where we got her DAFO's stated that the shoes are not doing anything for her.  So I was talking to my friend whose son is like Trystyn and he just got his DAFO's as well.  She told me that her doctor told her that you can just cut the tongue out of the shoe.  Well the kids and I were driving home from the pharmacy and I was in the process of telling my mother about cutting the tongue out and Rain (5 yr. old) pipes up with "Whose tongue are you cutting out?"  Let me tell you I was laughing so hard that I pulled over the van and told my mom to hold on.  And all the while Rain was saying, " Why are you laughing?  Come on just tell me whose tongue you are cutting out."  It might be a little thing but it just lightened up my mood in the best way possible.  You see I was really frustrated with the whole shoe thing and Trystyn's DAFO's.  Really I should have said pissed off.  I had already spent an hour of hell in Target trying to find the one size larger shoe that will fit over her DAFO's.  All the while Rain was pushing Trystyn away in her Kid Kart saying that he was taking her to the toy isle which is the isle that they wanted to be in anyway.  UGH!!!!  I think I said to Rain like a million times, "Stop trying to take your sister away I need her here to see if these shoes will fit her feet." 

I finally got the appointment set up with O&P Labs to get Trystyn fitted for her new sitting shell.  I am really excited.  Now she will be able to play on floor level and still be sitting at a 90 degree angle.  I am not so excited that we will have to wait 4 to 6 weeks to get it, but it is what it is.

I was talking to my friend today about the meltdown she had when she was out with her son.  She was experiencing uncontrollable crying because their speech therapist suggested that she take her son to this place which has a speech therapy group with other kids, but the idea is that you leave your kid there without you.  You see her therapist thought this would help him with his separation anxiety.  So this way when it is time for him to go to school it won't be such an issue.  What my friend's therapist failed to do was tell her that all of the other kids only have speech issues.  That when she goes there all the other one and two year old's will be able to walk and talk and sit.  All of the normal things kids do at that age that Trystyn and her son can't do.  So needless to say she was uncontrollably crying.  I told her about my breakdown when Trystyn was 6 months old.  It was right before we found out how severe the brain damage was and I was still trying to convince myself that she was just fine.  But then I went to work the day before Thanksgiving and my co-worker had brought her daughter in with her that was born two weeks after Trystyn.  Let's just say that from that point on I could no longer tell myself that Trystyn was just fine.  It was so obvious the differences between them that I literally could not function because I couldn't stop crying.  Anyway, I told my friend and hopefully this will help other families that I think it is well deserved and needed.  Believe me I have cried since then but not to that extent.  I really felt that for me it was almost cleansing.  In my case when everything initially happened with Trystyn I really didn't cry that much, even when she was in the hospital.  I think because it seemed that everyone around me was falling apart and that I needed to just suck it up and do what needed to be done and be strong for everyone else.  I guess what I am saying is it is okay to have breakdowns, but please don't feel bad about them.  Nobody will ever understand what we are going through with our kids until they have one of their own.  I don't mean a "Typically Developing" kid, but a kid like Trystyn and so many others out there.  Where you know in your heart that their lives will never be "normal".  I say cry, scream and do whatever you need to do to get out the stress and everything else that goes with this journey we are on.

I told my mom that I was going to write a book about raising a kid like Trystyn when you have other "Typically Developing" kids at home and that really the chapters would be as follows:

Chapter One:  Suck it Up

Chapter Two: If the medicine the doctor prescribes you doesn't seem to be helping maybe drinking will.

Chapter Three:  Fine someone to scream at to take the edge off.

Anyway, really I was just being silly and we were cracking up, but most days for me is just making it through this day without anything major happening and moving on to the next.  That everyone is still healthy and I still have time to put Trystyn in her Stander tomorrow.  Because in reality every day is the feeling that I am somehow not doing enough for her, or enough for Rain.  I worry about what all of this will do to his life and I worry about the future and anything else you can think of.  So at the end of the day, like today, I just think back on what did get accomplished and realize that still there is always tomorrow.

On that note, I am going to end this and hope that tomorrow is a better day.