Thursday, October 29, 2009

Some sound advice.

I feel a bit better today, I am over myself. I decided to set myself some goals to move forward with my life. I want to make sure I involve Jude more in everyday acitvities, and have "conversations" with him. I want to make sure that I start working out again on a regular basis because it always makes me feel better. I also am going to cut myself some slack by allowing myself to get upset, and to admit I cannot do everything. I want to make more alone time with my husband, and I will achieve this somehow. I also want to find a plastic surgeon that will pro bono help me with the mess up the other doctor created, but that's more wishful thinking than a goal, but I figured it would provide humor.

As I was sitting here contemplating what to write today my good friend Linda sent me the Dear Abby for today. I sat reading it smiling and I thought it very much hit the nail on the head regarding my emotional stress lately. My friend Fleck yesterday told me if I would like to come camp out in her trailer to regain my sanity I can. I replied in text saying "Oh no I have lost it, haven't I?". I giggled when I sent her the text, and I am sure she giggled when she got it. She said I was bound to lose it eventually, which made me feel better. Anyway, I would like to post the excerpt of Dear Abby on my blog so you can see what I read today.

"DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack.Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA

DEAR MOM: I heard from the parents of many special-needs children who echoed your sentiments. And you're right -- it does take a very special parent not to crack under the stress. Read on:

DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need.Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box). The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS

DEAR CINDY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again.
Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit. There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list. Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO

DEAR SONJA: In this time of draconian cutbacks everywhere, I hope our politicians will direct their thinking away from divisive politics and being re-elected to what must be done to help our most vulnerable citizens."

Mmmm, I don't need to type anything after that do I. Pretty much sums it up. I will close with some great pictures. Last night Jude wouldn't go to sleep, but once I placed him between my nice fluffy pillows he couldn't resist. Also, we go all out every year for Halloween, and I have some pictures of Mike, and Em creating the start to our haunted cemetery that is now in place in our yard.

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Image and video hosting by TinyPic

Image and video hosting by TinyPic


Preemie Miracle said...

Thank you for coming and stopping by. I have read your blog for a while. I love that we are all in the same funk lately. I have read more than one. I know we are all trying. We can do it! I know we can! Keep you head up. After 4 years I can honestly say it gets different. VERY different.. but thats the good part. It comes one day at a time!

Midwest Mommy said...

The music on your blog might have just scared the poopers out of me, lol.

I am always amazed at how much you and Mike do. Seriously. And then you even throw Em's Smile Boxes in the mix.

mom2nji said...

You a freaking amazing and never have to apologize for feeling stressed or down! I related to those Dear Abby posts too. No one knows what its like to walk in the shoes of a parent of a special needs child until you are there. I am so excited to read about the progress Jude is making! Keep up the good work momma!

Diana said...

if you don't mind me asking, what happened with your plastic surgery?
Happy Halloween can not wait to see your photos!

Cjengo said...

Ugh, lol. To be blunt the doctor made me Pam Anderson.....I didn't ask to be Pam, or anywhere near! It's tiring, my back hurts, I look funny. Plus I had a horrible allergic reaction to the disolvable stitches, and I have horrible scaring from it.