Hello to all my blog buddies! I bet you all thought that I had fallen off the face of the planet again! Alas, my escape would never be that easy!
Life has been... INTERESTING... to say the least!
Lets start with an update on Samantha. We are going to see a new specialist who has discovered that Samantha has, in addition to Angelman Syndrome, West Syndrome, Cerebral Palsy, severe brain damage from the infantile spasms she had as a baby, and her cognitive ability is no where near as high as I had hoped for the past seven years. The biggest blow in all of this new information is that her life expectancy is now dramatically shorter than if she had just been diagnosed with Angelman Syndrome. The short version is this: We will be very fortunate if she lives past the age of 20. There is about a 61% chance that she will leave us before her 10th birthday. Basically... really sucky news.
Now lets add some STRESS to liven things up a bit...
On Monday we discovered (much to our astonishment and mild terror) that we are expecting baby number three. Because of this highly unexpected development, I have had to stop all of my medications very abruptly. Yes, that would be all of the medication that has kept me in a semi-functional state for the past several months. My body is very unhappy with me and not adjusting well. This is considered a very high risk pregnancy and I will be lucky if I can stay off of bed rest for even half of it!
This brings all kinds of new stress in the form of: "The What-If's"
How will we pay bills?
What happens when I can no longer work?
How will I take care of my family if my body refuses to function properly?
Do they make nice rubber rooms for pregnant chicks, because I think I'm going to need one soon?!
How is a person supposed to handle prearranging funeral details for one child (so she doesn't end up buried in a cardboard box)while planning a nursery for another?
How are we going to fit five people in this piece of crap tin can we live in?
How long can we keep this news from the mother in law from hell?
Would it be tasteless to wait until the new baby's college graduation to let her in on the news?
Will I be able to emotionally handle things if this baby is not born healthy?
So, to keep my mind off of things for a bit, my next few posts will be silly and frivolous and for lack of a better description... material in nature.
Stop by for my "Cool Stuff I Want" series!
5 comments:
WOW. When you save up for a post you go all out.
1. Congratulations on the new baby. Best of luck. I am wishing you a happy and healthy pregnancy.
2. I am sorry to hear about your daughters diagnosis. That sucks does not even begin to describe it. My heart goes out to you.
3. I know it sounds trite and obnoxious but deep down in my soul I have to believe that God doesn't give us more than we can handle. He is watching over you. I have to believe that in order to hang onto whatever sanity I have left. I hope you find comfort in it too
4. I am thinking about you
guttergirl - I didn't mean to save up for a post... sometimes I just have several months worth of "stuff" hit me in one fell swoop and I have to scrape myself off the floor before thing calm down enough for me to post about it. :)
1) Thank you!
2) Thank you again.
3) a quote from Mother Theresa comes to mind: "I know that God will never give me more than I can handle but, sometimes I wish He didn't trust me so much!"
4) I appreciate it more than you could know!
Wow.....i am sooo sorry for all of this. I hope things work out better than it looks right now.
honkeie2 - Thanks for stopping by! Things do get better, and worse... my life is a roller coaster! But at least the rush is free! :)
The Neuro may be wrong. My baby has Infantile Spasms too, but the Neuro's have been wrong about several things in her 11 short months so far. Personally, I would reject his/her suggestion that her life expectancy might be short. It might be long too.
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