Friday, August 5, 2011

I am getting better at this!

Talking that is.  About what has happened to us.  Having this blog is a great outlet for me because I can get everything out...  in real life though, particularly with strangers or people I am not close with, I tend to avoid discussing things.  I am truly happy and 'OK', but there is so much raw emotion that sits just below the surface, and if you accidentally open the flood gates, it can be difficult to stop what might come pouring out.  That might be ok sometimes, but generally speaking you don't want to turn into a blubbering mess in the line at the post office if someone asks you a question about your child.  Sometimes, my strategy has been to lie to people, because it is just easier.   Conversations like "Oh he is so cute, how old is he?" and when I tell them they immediately say "Oh, is he walking yet?"  No...  no he is not walking.  Not even close.  But if you give an answer like that, it inevitably results in more questions, so sometimes I just smile and say "Yeah".  Truth is, I am never going to see that person again, so I don't really need to give them his life story.  Sometimes it feels wrong to lie though, like I am doing him an injustice.  Because honestly, my goal in life is to show the world how awesome he is despite his challenges and not to pretend that they don't exist.

So, today we had an appointment at the hospital.  It was essentially a follow up to our last appointment where we were officially given a diagnosis of Spastic Quadriplegia Cerebral Palsy.  I think in a lot of ways, I am a freak of nature or something, because I am so ok with this diagnosis.  I have honestly not shed a single tear about it.  I honestly got all of those feelings out months ago.  And I find it hard to understand when I see other parents talking about their child potentially getting a CP diagnosis down the road.  Logically, I understand, and I try to remind myself that I have in fact been at that point myself in some shape or form. But when I see children who are doing much better than Joshua and their parents worrying about a CP diagnosis in the future, I really don't understand.  I feel like saying "what is the big deal?  My kid has a CP diagnosis and he is the most freaking awesome kid in the whole world?!  What are you so worried about?!"  I don't say that of course, but that is truly how I feel.  (And I apologise if you are one of those parents and are reading this and find it insensitive of me to say this...  I truly am not discounting the very real feelings of worry that you have for your child, I just want everyone to know that getting a Cerebral Palsy diagnosis is not the end of the world, and it doesn't even have to be a bad thing!)  Nobody really wants their child to have Cerebral Palsy...  NOBODY.  And I realise that some parents with children on the severe end of the spectrum will probably be annoyed by my positivity at times, because their reality is again, different to mine, but here is my Joshua, in the moderate range of things, and life is good.

Anyway, back to our appointment and what I was originally going to talk about before I got a bit side tracked there.  We were in the waiting room to be seen and there was a little girl in there with her father.  Joshua was army crawling around, pushing some toys around when the father asked me how old he was, but instead of asking how old he was, he said "Is he 6-8 months old?"  And I said "No, he is 14 months" and he said "Oh, does he walk?" and I said "No, not yet"  To which the guy replied, "I didn't think so.  He doesn't look like he is even trying to walk?"  And I said "No, he has cerebral palsy, so he is delayed"  Interestingly the guy seemed to have a bit of a working knowledge of CP though I didn't ask him for his qualifications on the subject Hahaha.  So after that he said "I thought he looked older, because he is big and his facial features look older and he has a lot of teeth, but he behaves like a 6-8 month old"  And I was like "yeah" and then he said "Does the cerebral palsy affect his legs and not his arms?" and I said "No, it affects all of them, but his legs are worse than his arms" He kept asking questions...  about what caused his CP and I found myself telling him that he suffered from a lack of oxygen before he was born which resulted in extensive brain damage, that he spent 2 weeks in hospital after he was born.  He asked me if he was premature and I said No.  He asked me other questions about his development.  It was kinda weird and so nosey really when you think about it.  But the amazing thing about this, is that I conducted this conversation and did not become upset while sharing these details.  This is quite huge for me.  Oh and this random guy told me that Joshua was a very busy boy and that was a good sign.  (Maybe I really should have asked him for his qualifications...  LOL)  

Then we went in to see the Dr, and again, I managed to talk to him and stay cool as a cucumber the whole time.  (Ok, I admit that I felt myself falter a couple of times (the flood gates started to creak open, but I was able to quickly shut them before anything got out!!)  LOL  So basically the main parts of this appointment was that he wrote up a form for me to take Joshua for a hip x-ray, which he wants done before he sees him next (in three months time).  The reason for the x-ray is because the high muscle tone can cause problems with hip dislocation etc, so it will need monitoring.  He said yearly x-rays, unless of course they show a problem, which might change the course of treatment.  He also filled out the medical report that I need for Centrelink in order to get Carer's Allowance.  This is a non income tested allowance that will give me $110 a week, plus a health care card to help with the cost of medical expenses, plus an annual payment of $1000 to help with his care.  It will be nice, because I am self-employed, I do not get any paid leave.  Any time I take off in order to take Joshua for appointments is all unpaid, and I haven't won lotto yet, so I will appreciate this little bit of help.  
It is always interesting to see things in writing though...   The report says:
Primary Disability or medical condition of the child:
Cerebral Palsy
-Spastic Quadriplegia
-Developmental Delay
Other disability or medical conditions of the child:
Microcephaly (Severe)  
I am not sure why, but the inclusion of the word SEVERE is what got me there.  Was that really necessary?  LOL   Meanwhile, I was happy because his head seems to have had a little growth spurt, it measured up to a whopping 42.3cm today!!   Not that it is a competition, but as pathetic as his head circumference is (About average size for a 4 month old) I know of other kids with smaller heads.
So apart from those two things, two other interesting things occurred.  I am not really sure how it came up, but I ended up telling the Doctor how I am very active online networking with other parents in the same situation, and so I have been fortunate enough to see the whole range of outcomes from children who are completely fine to children who are severely affected, but that it has been very beneficial because many HIE children do go on to get a CP diagnosis and I have been able to see how well some of them are doing and know that these conditions do not have to be all doom and gloom.  He told me that was great because it was one of the biggest problems that they hear from parents is that they do not know where to go and how to access support, and so I told him that many parents, us included, leave the hospital feeling as though they are the only person in the world for this to ever happen to and that being able to talk to other parents is really invaluable.  I also went on to tell him about the Hope for HIE foundation that is currently being set up.  A website for families to access information about Hypoxic Ischemic Encephalopathy, and get support.   I said that they hoped to have it up and running in the near future and that I will be certainly letting him know all the details once it was, because the ideal situation would be for him to be able to pass this information on to parents as soon as the diagnosis is made.  I told him that pretty much everyone is given a prognosis that is somewhat doom and gloom, but that being able to see all the different outcomes and know that life does not have to be as bad as you were initially told, is great.  And he said "And that is why it is called Hope for HIE?" And I said "Yes, because parents need to have hope for their child"  He said it was really great and was looking forward to getting more information.
He also said to me "I was meant to ask you too, Did you make a request to get Joshua's medical records?". I was kinda thinking oh man, what is he going to say about that.  So I said "Yes, I did".  And he said "And did they send you everything you wanted?"  And I said "yes, I got everything I asked for" and he said "Do you have any questions about anything you read, I know there is a lot of medical terminology in there, and we wanted to make sure that you had an opportunity to ask any questions that you might have after reading it"  I told him No, I don't really have any questions.  My one question is "Why did this happen?" but as I understand it, that is still a question mark.  Which he agreed with.  (I did not tell him that I sent the records to another Doctor to get another opinion, that might be stretching the friendship a bit...  LOL)  But I did think it was really nice of him to bring it up and see if I wanted to talk about anything.  He seemed quite supportive of the fact that I had gotten everything, and I think today he has come to realise just how informed that I am about everything.  By the way, the Doctor that is reviewing our medical records has told me that he hopes to have his report to me by mid-September, so I can't wait to see what he has to say.  I am not really expecting anything ground breaking, because he is limited by the records we have, but still.

Well that is it, another super long post from me!  I will leave you with a picture of my handsome little dude, as I think I need to put more photos on my blog!  ;)

6 comments:

  1. What a great post, Karissa! I truly enjoy reading about your journey with Joshua. I don't think that you need to feel bad about "lying" to that person in the PO. I think you do so much to share and educate about these conditions...you don't need to feel bad for just wanting to get your errands done!

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  2. So cute! I found you on the FB HIE group and I was also on FF. Anyway - glad to meet you - blogging has been great for me, and a good way to document what is going on so you can look back later and see!

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  3. What you said is so true. I am sort of on the other end though, and I wish my daughter ONLY had CP!! So yeah, I sometimes wonder what other parents are worried about!
    You have definitely come a long way in a relatively short time. My daughter is 13 and we didn't have all the internet networking and FB groups, etc, and I really thought we were the only ones for several years. I think that made it take longer to be "ok" with where things were.
    That picture of Joshua is wonderful. I love it! He really is worth all the pride you have.
    I just also want to mention that the Carer Allowance is $110 a fortnight, not a week, but it is still helpful - especially the health care card part.

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  4. Thanks Donna, I did know that about the Carer Allowance being fortnightly, not weekly, must have been a slip of the finger (or wishful thinking!) ;) I can't imagine trying to process all of this without access to the internet, if we had to rely on only what we were told by Doctors etc, I think my state of mind would be very very different. I love being able to connect with parents on FB and see photos of their children and how they have been able to make their "new normal" and how they can find happiness in spite of the challenges they face. Even the parents of children on the severe end of things give me hope and inspire me. If anything, this experience has humanised disability for me. I guess it was not something I really thought of much before, but now when I see a child with a disability I am fully aware that their parents are people "just like me" and that my child might have been "just like their child" It is humbling and gives me a new appreciation for people. And thank you for your comment about Joshua's photo. He is seriously the happiest little dude, and although I have my moments, I just can't dwell on the sadness too much because he is there lighting up my life every single day! Being his mother makes me a better person!

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  5. Karissa, you do sound a lot happier than you did in the beginning, and that is great. We will always have our moments, we wouldn't be human without them.
    I was worried that my comment about "only CP" sounded rude. I want to clarify that my daughter has several severe medical conditions, and in the scheme of things, her CP (although also severe) is often forgotten because it is not an issue, as much as other things she has happening.
    Hope that makes sense, and didn't just put me further into "foot in mouth" territory!

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  6. Oh no Donna, I completely understood what you meant. I think we all do it to some extent... Look at children with "less" problems and wish we had it that easy. I might compare myself to a parent with a normal child and say "we've got it tough" but I know that many people also look at us and feel the exact same way. It is all relative, and I didn't take your comment to be rude at all. Sure some people probably would, but not me, because I totally "get it" ;) Sending you positive thoughts for your daughter :)

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