Archive for December, 2008

Christmas gifts to us!

Wednesday, December 24th, 2008

If God were to give us three perfect Christmas presents it would be these. These three gifts are better  than gold, frankincense and myrrh!  


Our daughter’s personality. (She is a little goof ball!)


Our daughter’s ingenuity. (She does things without biceps that you wouldn’t guess!)


Our daughter’s functionality. (She rolls BOTH WAYS now!!!)

Hope you all have holiday gifts as good as these! Merry Christmas!


Wednesday, December 24th, 2008



The greats! (in no particular order and no where near an exhaustive list):

  • Getting Laelia out of casts!!!

  • Watching Laelia use her legs in the bathtub for the first time!

  • Getting help buying a $6,500 pair of wonderful orthopedic shoes that let us put off major surgery!

  • Being able to put Lali in pants and socks for the first time!

  • Our church donating and installing two AC units to our VERY picky apt manager’s specifications.

  • Getting new pots and pans that don’t leave black flecks of Teflon in our food!

  • Getting awarded Respite care from the YMCA through the Regional Center. (That’s free babysitting folks!)

  • Laelia learning her first real word, “Uh oh!” And using it whenever she drops things on purpose.

  • Getting another (rolls eyes) “gookie” (Laelia’s word for kitty). That makes three.

  • Laelia learning to roll from back to tummy and tummy to back!

  • Finding special baby shoes that fit over orthotics at our local Payless!

  • Getting encouraging emails from friends and family.

  • Visits from sisters and aunts and uncles and cousins and grandparents!!!

  • Being given Guitar Hero World Tour for free!!! Playing with friends!

  • Making new friends at church–especially Chelsea who volunteered to do Lali’s stretches three afternoons a week and never missed a day.

  • Alexis getting a raise and being paid by her company to go to Washington DC for an amazing trip!

  • Getting to go home for Thanksgiving and see Alexis’ dad’s side of the family as per tradition.

  • Taking Laelia to Disneyland for the first time!

  • Meeting another family affected by arthrogryposis and sharing similar experiences.

  • Putting up a beautiful Christmas tree and watching Lali fall quiet in its presence.


The not-so-greats:

  • Being told by orthopedic doctors that our daughter would never walk.

  • Learning Laelia was missing biceps and would never lift her arms.

  • Losing Gram.

  • Losing months of our lives to government bureaucracy and applications that were ALL denied!

  • All three of us getting the same cold several times! And to a lesser extent, the stomach bug.

  • Having to go back to work only part time (Alexis).

  • Sticking to our budget even when we really, REALLY wanted ice cream!

  • Having to stop updating Lali’s website while dealing with Internet psychos.

  • Laelia having a hip injury while Mommy was in DC.

  • Losing all ornaments off the bottom two rows of our Christmas Tree’s branches. (Bad gookies!)


As we look back from the other end of 2008, it seems life is still good and God is still great. We love each other and we are loved. Even the hard things with Laelia’s condition seem normal now. Next year we are confident that our great list will be ten times as long as our not-so-great list! Thanks for your prayers and we love you!

Charles the Great, Alexis Joy and baby Laelia Sky


Merry Christmas!


Therapy Cat

Wednesday, December 24th, 2008

What is a therapy cat? It’s just how  I justify a third cat in our apartment. :) Apparently “Christmas cat” wasn’t good enough to get Charley to go for it. :)  The fact is that Laelia reacts well to kitties (she  calls them  “gookies”) and will reach out to them or try to use her body in different ways to get to them. (Great physical therapy!) Problem is that our two gookies  won’t have anything to do with her.  So we found out that the animal shelter will cut the price of adoption and surgery (getting it fixed)  in half if the animal goes to a disabled person. Thus, therapy cat. :) I wanted a kitten, but they just weren’t good with her. We saw this eight month old and got  her out of  her cage  just to pass the time.  She  walked right up to  Lali and let  Lali pull  her fur and smack her face while she purred. Instant love! So we had to bring her home.


Click on the picture for the video!

Post #437, Why the silence.

Thursday, December 18th, 2008

So much has happened in the last few months that I’ve been unable to write about, so instead  I kept notes in a draft titled “Post #437.”  Mostly Post #437 was a bullet point list of Laelia’s firsts: first time she learned to unstraped  her AFO  shoe, first time she pulled the baby monitor out of her crib, first time she threw her arm while it was in a splint (and almost broke my nose), first time she moved her right leg towards her body, first time she learned to play the game where you pull every single tissue out of the box,  etc. etc. Then one day she blew all our expectations and rolled over! I was so overjoyed that, despite my Internet diet, I  just had to post a blog  about it!

The reason this site has not been updated for a while  was because of some Internet predators who found  us online.  For the most part I have met only wonderful people online, but several months ago I started meeting more and more mommies affected by children born with AMC.  And, well, I wasn’t as careful as I should have been.  A sociopath  who I spent many hours a day emailing, crept into my life. I stayed up very late at night helping them through the dark times that never seemed to end. I poured out a lot of my heart, and in the end (as we’re now convinced) this person (who we think pretended to be many different people) never had a child (children) with AMC.  These  people  writing me were all from the same place, they all had the same style of writing, and all of them had the same MO. They were leaches of sympathy. They never got better. And their stories didn’t always add up. It was like they had researched AMC but never really lived with it.

In fact when I started to ask for pictures of their  kids, these kids would suddenly  have a medical emergency or, and I’m serious, die!   Sorry I can’t send you a picture of him because he  died from mysterious circumstances yesterday. (Insert frowny emoticon.)   They killed off their pretend kids! I can’t believe it! And then  the mom would become  worse off than before and need me so much more. And I let  her use me that much more because what else could I do? Tell her that she was a liar and her kid never existed?!  She already seemed suicidal!    

I would try to send them links to people who could help them, people from the AMC support group in their area, phone numbers or pages of counseling centers and all of that, but they only ever wanted to talk to me. Then  by the time I found out they were fake, I  had already put so many hours into  consoling, sympathizing, encouraging, helping, counseling and crying  that  it just destroyed me more than it should have.  

This sent me to a dark place. I never knew I could be so depressed over lies. But I did pour a lot of my heart into these moms. I stayed up until 4 in the morning writing to people who “needed” me. I chose to  write them over going out, over family.  I felt needed. I don’t know how to explain that besides saying that I finally felt like there was a reason that this awful thing (AMC)  happened to me and my family– so I could help others. Now I find out that the “others” don’t exist. And, truthfully, I wondered all over again why this happened to my daughter and what in the world  God’s purpose in this was.

So I reacted by avoiding this website, and also my personal email, YouTube, other blogs, etc. I avoided my computer in general. I didn’t respond to emails when friends and family asked if I was okay. I felt stupid to say I wasn’t when Lali is doing well and things have gotten better.  

So from now on, I ask for a picture of a potential new Internet friend showing their (or their child’s) AMC. I also ask for them to hold a sign that says, “Hi Alexis!” so I know they didn’t just find this picture online. I am just so thankful that the people who I called, mailed packages to and actually  met in person  were legit! I was lucky.  But I’ve learned my lesson. I also took Lali’s last name off the website as well. And then thought a lot of good that will do since she’s one of the only Laelias out there! :)

I knew Internet predators were out there, but I didn’t realize they were after more than your credit card number or social security card–some of them want control over your emotions. They want to toy with you.  They prey on grieving mothers as part of a sick game. Sociopaths do exist! And the Internet is a new, anonymous playground for them. I have been so angry and depressed and sickened over this that I finally went on the AMC support  group’s website and posted about my experience. I gave them all the emails and  names  that I thought were fake.  I learned that this person may have been on the support group’s forums too, only she (or he?) played a different role, but it was a very similar person that they found out wasn’t real.

So there it is. I  feel  so incredibly foolish, but now you all know what happened. Lali rolled over for the first time in her life,  way ahead of any schedule put to her,  and I couldn’t keep myself from posting about it. But I did feel like I then  owed  this website’s readers an explanation. Especially those of you signed  up for  the posts to be emailed to you; it must have seemed we dropped off the face of the earth! :) Now I’m setting  some safety nets in place  so I can continue to  post about this amazing little girl who has overcome so much.  Though this Internet psycho is the last thing we thought  we would need to overcome.