Laying on the bottom of the pool looking up

I really don't know what to say. I could sit here and swear up a storm, but not sure that will make any of this all better.

I called Dr. Frim's office yesterday to make an appointment for Keegan. After playing a few rounds of telephone tag, I finally got one made for May 8th - the same day as Riley's 3 month check up. It's a bit off, but I am just glad they didn't say May 8th 2009! That's how crazy busy they are.
Speaking of busy - I know a lot of you commented on how we heard the results of Keegan's MRI. You have to know Dr. Frim, and you have to know how EXTREMELY busy he is. Emailing is the best way to contact him. I email him almost everyday, and I get a response back every day. It's the easiest way. So no, we were happy to get an email.

Actually, I just got an email this morning. We were talking about how we would go about treating Keegan. As of this very minute, his symptoms are sensitivity to loud noises, and leg pain. Neither of these call for instant surgery. There has been some mentioning of the use of chronic neuropathic pain medicine. I am just not sure I am ready to use meds on him. But if things get bad, but not bad enough for surgery, what choice do I have? Let Keegan suffer in pain?

The other thing I have been talking to Frim about is the fact that Carson is still rocking herself. She will sit and thrust herself into the bottom of the couch, or against the bottom of a chair, and she does it all hours of the night. We've had CT's done by Dr. Jensen, our cranial facial doctor and he can't seem to find a rhyme to this reason, but when I asked to pick Dr. Frim's brain about it, he said there is a possibility of built up pressure that COULD be caused by chiari and to have her scanned would not be unreasonable. I just don't know if I m ready to take on anymore children with a chiari diagnoses yet.

I feel lost, I feel hopeless. I know I just need to take things one day at a time, but when I need to keep a household of 4 kids running everyday, I don't even want to get out of bed, no less the laundry, the dishes, the pick up of toys.......

You know living with 2 sets of twins under the age of 6 is hard enough, but when you throw in 4 children with 4 diagnoses, life becomes a ton more challenging- maybe unbearable is a better word.
I know Matt and I will get through this. I just hope we still like each other when we are old enough to look back and laugh.


Jean said...

You told your story in the raw. God, how I feel for you.
That's the thing about handling crises... you have to do while maintaining the norm. Pretty rough. And even if you are not irish, I hope you had a drink or two on ST. Patty's Day.

You are in my prayers.

BoufMom9 said...

I really wished I lived closer so that I could help you out in some way. It breaks my heart that you are dealing with all of this.
You know, when both of my babies were born & then diagnosed with a stroke & cerebryl palsy I felt absolutely let down by God. I already had 2 other children with CP & one child who is retarded and I just felt like God was punishing me for something.
I had so many people say. "God only gives you what you can handle" to which I felt like saying, " Well, God is wrong."
But, He is not wrong. EVER!
He knew what He was doing when He gave me my beautiful children and He knew what He was doing when He gave you yours.
You will get through this because you have to.
Please lean on anyone who offers it when you need it. :)

Michelle said...

I wish I had a life preserver for you, but I don't. Most days I feel like driving off a bridge. But I don't. Obviously. Because my kids are cute, and fun to play with.

We do a lot of emailing with K's oncologist, too, it's the only way we can get to talk to HIM, and not the automated phone system.

Well, shit. I feel so useless! You've been such a good friend to me, and I wish there was something to do or say to help. Maybe stop talking about me? Okay, done. You are an awesome Mom - and whatever needs to get done, will get done. Ask for help when you need it, okay!? Just take it day by day (or hour by hour if you need to).

AND - you should totally plan on going on my parents-only vacation to wherever next year. Mexico? Spain? Little Chute? It's my Make a wish trip, funded by me.

OH! I do have advice!! HOUSECLEANERS!! They keep me sane - and my house clean. One less thing to worry about. If only they did laundry ...

Michelle said...

Well, first off...HUGS! I do not have 2 sets of twins...just 1 set and 2 singletons. But I can understand how you are feeling about all the diagnosis. I had those same feeling s in Augusut and heck at that time I only had 3 with chiari. It was a dark time and it was hard to even function. By the good Grace of God I was able to kick myself out of the darkness and move forward. But it took time.

Lindsay's diagnosis really bothered me. I had a few dark days and now I am much better. Of course, next week after we finish our MRI's and Lindsay and Gabe are seen and we have some answers, I cannot promise that I will not be blah again. But somehow we are able to keep going. I was told once that Moms of Children with Special Needs are very special moms. That is so true. I think that somehow we have been given an extraordinary ability to love, nurse and advocate for our little ones.

You are an awesome mommy. Cut yourself some slack. By beating yourself up you are only making it worse. Hang in there. You are AWESOME!!!


tish said...

Ditto to all the comments so far, Cindy. You and Matt do a great job with those kids. They are wonderful little people who seem to be coping pretty darn well. They're happy, feel loved, socially well adjusted, delightful to be around and just darn cute. And all those attributes are directly related to you and Matt. And those children have also benefited tremendously from all the love, attention and upbeat attitude of Pat and Ed who retired at absolutely the right time! You've had a lot to deal with these past 5 years, it's true. But you seem to keep doing an A-Number 1 job of parenting and coping. Kudos to you!

Beth said...

My heart goes out to you! I cannot even begin to imagine what you are going through and feeling emotionally. Know that others are thinking of you - I check every day to see if there is an update with the family. Thoughts and prayers,