Tis the Season to be Jolly

Orrrr maybe not because Bella always gets sick this time of year and mom and dad have to deal with a sick kid.

So I guess its that time for Mr Negative to post a long, drawn out, pessimistic view on life with a special needs child.  I like to tell others that I'm a realist, not a pessimist, but they just laugh at me and I don't know why.  But let's dive in to my ramblings...

I'm beginning to wonder if Bella will ever sleep through the night on a consistent basis... 4 years and running is starting to wear on us. Usually it's about 3 weeks of interrupted sleep (a couple times over an 8 hour period), followed by 1 week of sleeping through the night.... so we can pretty much assume that we will have interrupted sleep for 3/4 of the year... simply AWESOME!

I'm not saying that we have it harder than others, but I do think it's funny when people try to relate to having a sick child, and sympathize with you.  Don't get me wrong, I do appreciate the sympathy, but having a sick Bella is totally different that having a sick child.  It's somewhat similar to a sick infant, in that she cant communicate in any way what is bothering her so as parents you have to guess... but with an infant it seems to be more obvious and easy to diagnose... I could be wrong, but atleast you know that this short duration of not being able to communicate will pass.

With Bella it is ALWAYS a guessing game! Most recently we have added two more variables into the equation, that being scoliosis and hip socket issues (read previous blog posts).  Fortunately the specialists we saw recently are not too concerned with her hips.  Unfortunately, her back is currently curved at 30 degrees and will probably get worse unless we can develop her core trunk muscles... the past 4 years tell us thats not going to happen, but we wont give up.  We are desperately trying to get her into hippotherapy again... which is actually nothing to do with hippos, rather riding horses.  Supposedly the Germans were the first to attempt this sort of therapy and discovered it helped... whether or not that was with special needs kids I have no idea... but I know that's what it is used for currently in the US.

It's so easy to get mad at the situation (and God, yes I will admit I get mad at Him) because it just seems to be one thing after another for Bella... and us.  I do consider us blessed that we have two beautiful children and good jobs and such a good support group around here, so for that I am very thankful.  But Bella does not deserve the life she has had thus far... nobody does... and that is what I struggle with most... trying to understand why.

I always wonder what Bella thinks of her life and if she is happy or sad with it.  I know she doesnt know anything different, but I definitely know she thinks about things due to her facial expressions , so I wonder what she thinks about.  One of the things that pops into my head on a daily basis is what she thinks of how Kristen and I interact with Oliver.  I see her watching us all the time... which leads me into my next topic.

I was always scared to have another child, for a couple reasons.  One of course being the obvious reason that we could end up with another special needs child and I wouldnt be able to handle it... and two that I would prefer to be around the healthy "normal" child over Bella.  So far it has been relatively fair time spent between Oliver and Bella, but I have a slight inkling as Bella gets older and harder to interact with, and Oliver becomes more active, that I am going to choose to be with Oliver over Bella.  Is this fair to Bella?  Most certainly not, but I can honestly say that I will be shooting hoops with my son outside, and if Bella wants to join us she can, but she will more than likely be sitting on the sidelines watching... I hope to always  include Bella and maybe someday she will prove me wrong and join in the activites.... I can only hope!

Kristen asked me the other day what things I enjoy doing with Bella and what things I consider work... I've given it some thought before but never written it down or really dug in.  Here's my negative take...

1. Eating - on average we spend up to 45 minutes feeding Bella 3 times a day.  This also includes giving her drinks when we think she wants one.  She doesnt tell us she wants a drink, we have to read into her actions.  Eating involves us preparing her food, and if its not yogurt, then its usually something in the food processor to blend it up enough for her to handle.  When Bella is not feeling well (atleast half the time) she does not hold her head up and it takes even longer.  I consider this WORK.  We did take Bella into a feeding clinic and they told us she needed a G-tube... which is a tube that would be surgically inserted in her stomach and food would just be pumped in.  We knew how much Bella loved to eat, so we refused the procedure.  So for our credit, we did not take the easy way out on this one.
2. Bathing - Bella requires to be bathed in a bath chair.  We do not fill the tub up with water, because Bella can easily fall over into the water, so we have a shower wand that we use.  We have to get cotton swabs and put vaseline on them, then put them in her ear for every bath.  If we dont, or dont do a good job of getting them in there, then she is susceptible to ear infections... something we have battled for 4 years.  One has to kneel on the floor in front of the tub, bend over the tub and bath Bella in her chair.  This usually lasts about 10 minutes, but your body just hurts afterwards.  I consider this WORK.
3. Playing - Bella prefers to be laying on the floor and playing with toys.  Her toys are limited to lightweight objects that she can grab with one hand and wave above her head.  If I lay down next to her to play, she usually doesnt acknowledge me unless I start tickling her or take her toys away.  Bella is very ticklish and her laugh is amusing... I ENJOY this.  Any other part of playtime that forces Bella to do something other than wave a toy with her hand would be considered WORK.
4. Outside Activities - when it was nicer out, I would go for runs and take Bella with me in the jogging stroller.  When she held her head up (half the time) I ENJOYED it.  The other half when she had her head down to the side and was spitting and not looking up, I considered it WORK... because I was constantly stopping to correct her posture so she could ENJOY the outdoors and colors.
5. Running Errands - Without a doubt this is WORK... usually Kristen or I go out on our own to avoid having to take Bella with us.  It is too much of a pain to take Bella with us unless the errand will be quick.  Taking her kid cart into stores with a shopping cart is too much.
6. Watching TV / Movies - Bella doesnt really do this well because she has to keep her head up.  I ENJOY this when she is paying attention.
7. Dancing - Bella loves to dance with people.  It mainly consists of you holding her in your arms and bouncing her around to the beat.  I ENJOY this.
8. Sleeping - Putting Bella to bed is hit or miss.  When she is feeling well, then its pretty easy.  When she is sick, all bets are off and you can assume that you will be up with her atleast a couple times during the night.  We still have to give her some melatonin to help her relax to fall asleep.  Regardless of the way Bella is feeling, we still say our prayers and hope we have a good night sleep... for some reason this works only 25% of the time... Maybe we need to start yelling our prayers!
9. Therapy - I do not do a good job of giving Bella the therapy she needs.  However, her school does everything we could ask for and more... which is awesome!  I consider this WORK for the limited times I do this.
10. Communication - Communication has developed over the years into subtle noises and facial expressions.  Bella was improving with vocal sounds but had so many ear infections that she just stopped communicating with consonants .  Bella does not have the capabilities to do sign language at this time.  She does use facial expressions as communication, and thats what we have to go by.  Communicating with Bella is WORK.
11. Dr Appts. - WORK.  No need for further explanation.  Usually they are during naptime as well.

I will stop at these 11 items.  As I discussed each above, I began to think about if its really my opinion that I should be focusing on or Bella's... for that reason I will go through these 11 things and list what I think Bella's take on them is.

1. Eating - ENJOY with out a doubt.  Just sucks when she feels bad because her feeding is usually hampered and becomes WORK.  No matter how much work it is, I will continue to resist the G-tube procedure.
2. Bathing - ENJOY.  Bella always enjoys a bath, especially if two people are present, one to keep warm water on her while the other bathes her.  She usually tries to get a couple licks of water in during the process.
3. Playing - ENJOY.  Bella loves interaction with others, being tickled, and laughing.
4. Outside Activities - ENJOY.  Bella likes to be outdoors, especially in a nice head wind so she can stick her tongue out to "taste" the wind.  She especially loved the ocean breeze in Hawaii.  She does not like the bright sun, so we try to keep her in the shade as much as possible.
5. Running Errands - ENJOY.  Unless she is hungry or tired, I think she enjoys being out and about.
6. Watching TV / Movies - ENJOY.  When she is paying attention... really likes NASCAR and other colorful sporting events.  Cartoons not so much.
7. Dancing - ENJOY.  She loves to dance and bounce around.
8. Sleeping - ENJOY.  Who doesnt?
9. Therapy - WORK.  Unless her teachers think otherwise... and Bella will let you know when she doesnt want to do something.
10. Communication - ENJOY/WORK.  I think Bella has no problem letting others know what her opinion is on something but I do think that she is starting to get frustrated that she is not always being understood and cant communicate her needs to others.  I really wish she would be able to interact with the kids at school more so they dont give up on communicating with her.  I applaud her teachers for keeping that hope alive.  I hope and pray that someday she will be able to talk to her mom, dad, and brother.  I dont care if its through a robotic voice at this point. 
11. Dr Appts - WORK. 

So by performing this analysis, I think I have convinced myself that I shouldn't be concerned with how I view interaction with Bella, but rather how Bella views things.  And I feel bad for it taking me this long to realize it.

Jumping back over to present day... Bella has now been sick for 12 days.  That means 12 horrible nights of sleep for everyone.  During these 12 days Bella has had a runny nose, cough, fever, ear infection... and those are just the external things.  Lets hope that these 12 days of Christmas are behind us and Bella can start feeling better for the Holidays and ENJOY life and family time a little more than she has been able to the past couple of weeks.

Bella, if you ever are able to read this, just please remember that mom and dad, for whatever reason, have decided to share their daily challenges with everyone in the world and in no way was this intended to humiliate or offend you.  We love you with all our hearts and hope that someday, wherever that may be, we can all sit down together and talk to each other about our silly blog and how insignificant these daily challenges were.  Thanks for bringing love and laughter into my life!

Love - Dad

PS - What absolutely amazes me is that when I started this blog posting I was completely pissed off at the situation God has bestowed upon Bella (and us) and wanted to vent about it.  As I reached the end of the post, I find myself crying [I can get emotional sometimes :)] realizing how much Bella has touched my life and how much suffering she has endured over the past 4 years, but still finds a way to laugh for me even when I'm treating her ear infection.  What I go through on a daily basis shouldn't even matter anymore.  I'm a new man now... I think Mr. Positive has a good ring to it :)

Merry Christmas and God Bless!