About Me

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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Wednesday, August 26, 2009

Boys...

This post will be about all the boys in my life...
My friend Chris and I talked and I won't be watching Devin on a regular basis for a while. In actuality I think it will be longer than just a while...I didn't do anything wrong but found out from my husband that he talked with Chris about me watching Devin. I didn't get upset like he thought I would, he was worried about me and I guess he told Chris about it. I don't know how I really feel about the whole thing. I miss Devin like crazy; but I know that not watching him has allowed me to rest.
I always worry about what people think of me; you know the stuff they don't say to your face. The last thing I want is for people to feel sorry for me, or pity my life. I say things like "I don't care what so-and-so thinks"...but I do care; if only a little bit. (Not like cry myself to sleep and change my life care...but...enough to put up a front about how I feel) So when Frank sat me down and told me about his talk with Chris and his feelings on me watching Devin, I was a little surprised and hurt. It hurt because I knew he was right. I would have never given up watching the baby if I could help it. Not that I would watch him while contagious or unable to take care of him, and I think (hope) that everyone knows that I would put him before myself. I was actually able to go over to Devin's house to play D & D (Yeah...I play D & D) and I got to hold him and play with him, if only for a little bit. He has gotten so big! And still adorable ;o)!

My sister in law has 3 boys. Nick, Anders and Finn; I used to watch Nick when he was a baby. Nick is close to the same age as my daughter and I really miss having him around. I haven't really gotten the chance to know Anders or Finn that well, and Nick and I have grown apart... Which breaks my heart. He is such a great kid and he is funny, witty and smart. I know he doesn't need me to tell him those things; but I wish I could more often. His Mom is having a birthday party for Anders tonight, and I can't go. I wanted to but I'm not driving myself often because my muscles are so bad, so I need my husband to drive me to these things. Unfortunately he has to work.

I really wanted this year to be the year that I strengthened all of my relationships, however, my body doesn't seem to want to cooperate! I guess since this year isn't over yet I still have time...

For my next blog entry I want to answer questions and say things that I probably should have said already (thanks CG)...so feel free to email me a question or post it on here and next time I'll compile it and answer...

life...

So since it has been a while since my last blog I'll give you the dirt on what has happened since then!

~ The adoption day came, and despite being emotional it was my husband who told a story that made everyone cry. For once...it wasn't me!!! ;o)

~ My husband and I celebrated our 11th aniversary on the 22nd of August. We went on a weekend trip to Washington DC. Kate came with us, we always celebrate our anniversary with her.

~ My brother Pete turned 28 on the 23rd! He is doing well, I think. I always worry that he isn't. I guess that's the big sister in me. We are having Pete over this coming Friday for a birthday dinner! No matter how old he gets he'll still be my little brother, even if he is taller than me!

~ Kate is getting ready to start school next week and she is really excited about it! She went school shopping with her Nana and she had to get clothing from the juniors section...my little girl isn't so little anymore!



All in all this past week has been good, I had a NIH visit last Wednesday and my PFT's went up to 82% (FEV1) They were very concerned they would continue to trend down because of my inability to exercise lately. YAY!

Thursday, August 13, 2009

Adoption...

So we finally got a court date to finalize the adoption. Monday at 2PM. I know it was short notice, but the court house had a cancelation and I jumped on it. I am half regretting that I di though, because I wanted to share the day with everyone I love. As many friends and family as I could get together. But its not possible on such a short notice. My Dad is probably not going, he has to work. What am I supposed to say? Gee Dad I can't get pregnant and I'm sick...this is like child birth for me; not to mention my only chance. That would just make him feel bad about something he can't change. So I'm just sucking it up.
I guess I'm just worried that when I'm gone Kate will need help remembering the good times when she is sad, same with my husband. I want people to be able to say, "Hey do you remember the adoption?" I guess I'm being silly...

I got my lab work from the 4th of August this past Tuesday. I called my doctors office to discuss the results with my nurse as usual. You know brain storm ideas and new medicines...but instead I got a call saying the doctor wants to speak with me about them. So I had to make an appointment for Friday. We all know what it means when they want to talk with you about it in person. LOL
However; with the adoption being Monday there is nothing she can say to bring me down.

Thursday, August 6, 2009

The cold hard truth...

So tonight I was writing an email to my Aunt Wanda to kinda give her a quick update on my family and stuff. Told her about Kate wearing a size 8 shoe, being 13 and already an inch taller than me, and the parental rights termination hearing....when I realized for the first time...

My Grandmother will not be at the adoption hearing. She won't be able to tell the judge that I am a good mom, that I have been a good mom since day 1...she'll only get to look at pictures. This is something she wanted to see so badly. She and my Grandfather. He passed away earlier this year and I came to terms with the idea that he would never see it. But I had somehow managed to *not* think about how much it meant to me that she wanted to be there; to see it.

So tonight, because this is all I can think about. Because I can't stop crying, and because I love them all I will share a secret. I know what suffering is. It's not what you think...it isn't what I thought...

My Mom's Mom, Grandma--she passed away in 1995. Pre-Kate...I know had she gotten to meet Kate she would have loved her.
My Mom's Dad, Grandfather--passed away when Kate was younger. He and Kate got along great. He started her collecting dolls and coins! Back then we had no idea how badly things would go down hill with Kate's birthmother. I had always wanted to adopt Kate, but her BM was in the picture back then...trying to be Kate's mom...just not trying very hard...
My Dad's Dad, GrandDaddy--I never met him. He died in a plan crash when my dad was a boy. I often wonder if he'd be proud of me, if he would approve of Frank...but I *know* he would have loved Kate.
My Dad's Step Father--GrandDonald--He adored Kate! He was tickled when he heard about the plan for adoption. I only wish this was done sooner for his sake...Kate was devistated when he passed. She missed a whole week of school and we just couldn't believe he was gone. Some days I forget.
My Dad's Mom, Grandmommy--The only Great Grandmother on my side that Kate got to meet. She had a massive stroke a few years ago....the adoption was going to be a surprise but we told her. We wanted her to have something to look forward to. But we know now that she is not coming home. She is paralyzed on her right side, she's unable to speak or eat...
Her husband GrandDonald passed while she was stuck in that nursing home...

You know when I found out about my CF and then about the mitochondrial mutations...when they told me the odds of making it to 4o...with my motor functions in tact...I cried and I couldn't understand why I was the sick one. Why I had to suffer...but life went on. I dealt with it. But when she had the stroke I learned what it was to truly suffer. It is watching someone you love suffer...to watch her try to move---to say something. Anything. Nothing. For the life of me I still can not figure out why this happened to her...

That is why from this night on...I will not cry for what CF or mitochondrial mutations will take from me, but for what they will take from every one I hold dear. Because I know how they feel watching me struggle.

Tuesday, August 4, 2009

Still thirsty...

Well today I was finally able to get my IV's again! YAY! As soon as the IV was hooked up and running I totally passed out. I slept hard for the next 4 hours. I wish I could say that I feel great having had them, but I don't. I do feel a little better, but the true test will be my pain levels. They have been off the charts for the last week. My muscles have just been so achey...they were basically being starved with out the IVs. (At least thats what I think was happening) I have IVs again tomorrow and then again on Thursday, so I'm hoping this weekend will be a good one!

Kate has been staying with Frank's parents this week; I miss her terribly, I can't wait for her to come home! I have no clue what I'm going to do when she goes off to college...my plan is to move with her. lol

The IV center drew blood today so I'll be getting my results again. I can't wait to see what they are now. In other news I have a theory about my CK. My doc thinks it is related to my over all cholesterol, but I don't think it is. I've been charting and mapping my results for months and I think it has to do with my HDL (good cholesterol) So I showed my doctor at my appointment yesterday and she agreed there might me something. So it looks like we are going to try to raise my hdl. Obviously we can do it through food or IVs because I don't absorb those well enough. So she wants to try estrogen patches. That's right! My doc said estrogen is a high densitiy lipid protien, so...the plan is to try to sneak it in with the patch...
but shhhh....if my body finds out it may not work. You know it does not like to absorb anything; let alone HEALTHY stuff.

PS-If you want to look back at the test results I have posted...check out the cholesterol, hdl, ldl and CK...you'll see what I'm talking about!!