Hope for a Sea Change

My friend and fellow blogger Elizabeth Aquino has published an excerpt from her memoir Hope for a Sea Change. It is a fascinating, exquisite story of the earliest days of her daughter Sophie's life. Sophie, like Maggie has a life of doctors and disabilities.  This is a must read for anyone in Maggie's World.

Hope for a Sea ChangeA Search for healing Elizabeth Aquino

The book is available at Amazon.com (where I hear it's #7 on the list of short reads!)

 or you can get it at www.shebooks.net. 

I'm rather fascinated with Shebooks becasue their focus is to publish women writers or books/writings in which women would be interested. This is their effort to address the historical disparity of an overrepresentatoin of male authors in a world where the majority of the readers are women. Check it out. There are alot of good writers on there and you can buy the download and pay for the works indivdually or subscribe for $7/month and download to you hearts content. (I think, check the sight for specifics, but I subscribed) 

Either way, do read Hope for a Sea Change. 

You will be amazed. 

Give your input

My friend Elizabeth received a comment on her wonderful blog,  a moon, worn as it had been a shell. The comment was from a fourth year medical student who reached out to Elizabeth as the parent of a child with disabilities or special health care needs. The doctor wanted to know what parents want/need from their doctor and how s/he can provide that to parents and children s/he will meet in practice. Elizabeth called for responses. I gave one and if you feel the need, you should too. You can either respond at her specific post. (Just tell her you came from me) or respond here and I will forward it.

This was my response


Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.

Extreme Parenting

My friend Elizabeth, from a moon worn as if it had been a shell prepared this lovely video by, of and for parents of children with disabilities.

I kept promising to send her a picture of me holding up words of guidance for parents who are new to this world, but I never quite got to it. I'm sorry I procrastinated (again) because I would be honored to be part of this. But I don't know what I could add to this, I think it says it all

Enjoy the video and share it wide and far.

Whew!

The busiest weekend in recent memory is drawing to a close. It was go go go.

I laughed 1000 times yesterday at the reunion, seeing some people I have not seen since I graduated from high school back when Calvin Coolidge was president. Ok, maybe not quite that long.  I actually had a bit of laryngitis this morning from trying to talk over or with 500 other women simultaneously.I did take one serious thing away from that reunion. Seeing all those together women is making me rethink my commitment to just let my hair go gray. They all look so fabulous!

Just before the reunion started I received a text from a nurse agreeing to take the Saturday night shift so we could do our quick trip to Monterey and back. If he hadn't taken the shift, I would not have gone because there just would not have been time. The morning was a bit frantic. Every single time we decide to try something, our nursing falls through or some other glitch arises. I was bound and determined to make this work and called and texted every nurse we have for over an hour. Filling an overnight shift  for Saturday night at the last minute is not easy, but Rudy came through and we were off.

Monterey is about two hours from here. Steve picked me up from the reunion and we were there in time to take Eddie to dinner. Steve drove the entire way, which was a good thing because I fell asleep after about 10 minutes in the car and woke up in San Jose. We visited with Eddie and returned home by about midnight so we could greet the night nurse who came to our rescue. Steve drove home too, and again I slept for about half of the ride. This happens every time we take any kind of road trip because I actually relax and BAM! I'm out like a light.  I decided maybe I shouldn't complain about being tired since he did all the work while l snoozed. He slept in today and had a free day of puttering.

This morning I set Maggie up with her talker and the first thing she said was "Mom, I miss you." I was gone for 12 hours and she very sweetly let me know that was really not acceptable to her. I just smiled and said, "I missed you too Mag, but I always come back, don't I?"

The weekend wrapped up with a wonderful afternoon spent with Elizabeth who I was meeting in person for the first time. We are blogging friends, and fellow warriors in this life with disabled teenaged daughters. Maggie told jokes and charmed her and her friend Jody, who I also know. I met Elizabeth through Maggie World (virtual) and I met Jody through Maggie's World (actual). Now Elizabeth can slide into the "actual" slot as well.  Seems like she had been there for years.  We connected like old friends and talked for hours.

I took her to the airport and said goodbye and drove home with a big smile on my face. It was a great ending to a great weekend. I solved the nursing crises, spent time with my husband and son, reunited with old friends and connected with a new one.

Of course it's not really over. Maggie is off school tomorrow for some teacher day or something. That means another day of activity.

Time for another nap.