Saturday, April 04, 2009

Just in one of those moods...

I haven't posted about Sophie lately because sometimes it is just too hard to write anything positive when I am feeling overwhelmed and sad. And I hate being negative and unappreciative of the things that Sophie can do. Especially when everyone around me points out that I am fortunate that Sophie is doing as well as she is doing. Sophie had a doctor's appointment the other day and I was told that Sophie will never be "normal" but that I should be happy for how great she is doing compared to others with her same diagnose. But sometimes it is hard for me to see. Hard to look past the seizures that she has EVERY SINGLE DAY...ALL DAY LONG. I am tired of it. I am tired of not having any answers. I am tired of none of the treatments that I research and research and research give her any relief. And now I am pregnant. How am I going to be able to divide my time between all my kids and give Sophie the attention she needs. I just feel like the older she gets, the farther and farther she is falling behind. And Elsa just keeps getting so much smarter. I am so happy for Elsa and I love that things come so easily for her but it is hard to watch her do things at 14 months old that Sophie at 42 months old cannot do yet. It is such conflicting emotions. And though her doctors are quick to point out that she is still progressing, they are also quick to point out that they don't know how much longer she is going to continue to do as well as she is doing if we don't get the seizures under control. Except no one has any answers for us. Nothing seems to work. Surgery is not an option. I feel so lost and so helpless. And guilty. Guilty for feeling this way.

6 comments:

baby trevor's mommy said...

releasing it...even into cyber space...is (supposed to be ;) good...

((((((((((hugs))))))))))

I love you & Sophie...and the rest of your family...in a way that I don't even understand. IS has given me a sister...

...danielle

JSmith5780 said...

It's sort of like how you wondre how you'll be able to love each child enough. You will continue to find the time for Elsa and the new baby AND STILL have time for Sophie. That's what we moms do.

I struggle too with Austin's deficits. The neuropsych said Austin will always have slow processing and always be behind his peers. It stinks to hear, BUT the neuropsych isn't a fortune teller, he can't see the future. No one know how Austin (or Sophie) will do. But it is our job to continue to provide them the tools to succeed. Keep working with Sophie, don't give up!

Tara - Aidan's Mom said...

Elaine - I've been where your at now. My first 2 have about the same age difference as Sophie & Elsa and my youngest was such a smart cookie. As a baby and toddler everything came super easy to her. She was walking at 8 months old and that was the same time her older sister was just learning to crawl. Emotions where all over the place with me. And to top it all off the hubby was deployed overseas at the time.

Just know that whenever you feel like your emotions are taking you on a roller coaster ride that you have lots of other Mom (and Dads) that know what your going through and are hear to listen.

Anonymous said...

Hope the mood you're in now doesn't linger long. But I have to admit you have every right to go there. There isn't anything worse than not being able to make things right for your child.

You may not find a cure for Sophie but she will certainly reach her highest potential and that's because of you and Brad.

As far as being able to divide your time between the kids...you will. It just won't be equal time, but then it never is. Each one will need more or less of your time as they grow. Then come the times they avoid you like the plague!!

I say a prayer for all of you every day.

Love,
Barb

Holli said...

Danielle is right...releasing
frustration is my favorite therapy.

I related to your words as if they were my own...the desperation for seizure control & the on-going struggle to balance all these emotions.

Any kind of appointment will bring me down...but then I remember...Austin has not been typical so far...how would they know what's in store for him?

Remind yourself how strong you are! And what a fighter Sophie has been!

labonte4 said...

I feel the same way. We are in house getting an EEG right now and just at whits end on what to do next. We've almost done it all. I have 3 children and it is sooo hard to balance it all. Just wanted to say I understand what your feeling in every sense of the word. Sometimes I feel that Sophie and Ava...really are very similar. Dr.'s always tell me..I should be thanking my lucky stars she can walk and talk.

Here are some (((HUGS)) for all of you.