Archive for June, 2008

Good intentions, wrong words

Thursday, June 26th, 2008

When my mom died, my boyfriend told me he “knew how I felt” even though no one in his family had ever died. He told me to “not feel bad.” He told me  the Bible says that all things work together for good (making Romans 8:28  my least favorite verse since most people take it out of context like that). He looked at me a month after she was killed and wondered why I hadn’t gotten over it yet. What was my deal anyway? Why was I being all sad and depressing?

And he listened for hours and hours. He held me as I cried. He was there at 2am. He went out of his way to learn about grief. He read up on it. He dragged me to a counselor. If it weren’t for him, I would be lost.

And some of his words were born from innocent  ignorance. The pure kind of ignorance that comes from never having experienced what I was going through. And he had to learn not to say “I understand what you’re going through,” or “It can’t be that bad,” when I poured out my heart to him. And I appreciate him more than anything in the world. And I married him.

I learned the importance of words a while back  after listening to a tape of my aunt talking about what to not say to single parents. This was back in my  first or second  year of college. She and I switched cars after mine broke down in her hometown on my way back to Placerville. Her car had a tape of her talking about single parents,  she being one herself. She is involved with S Moms. (Although I still haven’t figured out what the “S” stands for since it doesn’t stand for “single”… super maybe? :)) She said never say, “I don’t know how you do it,” because, and I never thought of this, most single moms don’t know how they do it either! And they may be thinking they’re not pulling it off and wonder if you’re noticing. Have I ever said that to a single parent? Maybe. Possibly. But I’ve never been a single parent (joking about Charley’s late hours aside) so it would have been  said out of  simple  ignorance.

In the same vein, most people don’t know what to say to parents of special kids because they are not in that situation. They have, what my friend, Sue, calls, “boring” kids. :) I have had many conversations with other parents of “not so  boring” kids, and many of the same themes arise.

It’s not helpful when you tell someone your kid’s diagnosis and they start out the next sentence with, “At least your child will never…” The nurse at the doctor’s office just told me, “At least  your child  will never fall out of  her crib like my son did last week.” Many people have said, “At least your child will never scratch her face like my  baby always did.” And after telling people why our babies don’t move, many of us have heard, “Well at least you will never have to chase them all over the house!” But what they don’t get is that they would die of grief if someone told them their child would never do those things! It’s like saying, “Well at least with little Johnny’s Down’s Syndrome, you’ll never have to worry about rising college costs!” It’s just not appropriate. Yet every time I’ve heard “well at least…”, it’s from some good-intentioned person trying to make me feel better. And it’s weird, but I do feel better–that  is until I’m thinking about it later that night. Then I’ll  think about how  my little  daughter will at least never do those things and I get sad all over again.

I’m not saying that I’m remembering this one person who said those things and that one person is, of course, you yourself, and I’m harboring hurt feelings towards you. On the contrary.  I don’t remember half the times I’ve heard these things. I  don’t have anyone particularly in mind (besides that one  nurse mentioned above who was actually really nice) when I think of the hundreds of times I’ve heard words like these. It’s  something I would have said too. In fact, I’ve caught myself saying similar things  like this plenty of times. Well at least  you had fire insurance… at least you can get another dog… at least there were no other people involved… at least they  didn’t feel  any pain.  Later I’ve wanted to smack myself for saying those things!  

I realize now–and this is the point–that  it’s not my responsibility to see the bright side for other people. It’s always better when  someone comes to those conclusions on  their own. Like somehow it’s okay for Charley to say, “At least  my daughter will never have to wait in line at Disneyland,”  but not for other people to say that.  

But even when people don’t know what to say, I always feel better after talking it out with someone. I hate elephants in the room. I don’t mind questions. I like talking about Laelia, and sometimes that involves talking about her disability in the same way talking about  Billy means mentioning his bad haircut. I also like hearing about other people’s kids. I can sympathize when little  Joey gets a hangnail. I don’t have to compare it to Laelie and conclude that Joey’s boo boo somehow doesn’t count.

And  most of  the other moms I’ve talked to  feel the same way. At least the ones who are over the initial grief. We love how our friends and families have supported us and loved us and been a shoulder or an ear or a helping hand to us. Even when they didn’t know what the right thing to say was.

You give “boring” a good name. :)  

Muscle clinic

Wednesday, June 11th, 2008

Well, that was interesting.

Our appointment time changed from 10am to 7:45am. We were there for five hours. During our stay a fire broke out on the third floor of the next building. Then  a news crew  showed up. So, you know, cool.

The neurologist who saw Laelie wasn’t encouraging about our eligibility for the clinic. We are starting some tests to *try* and find out what caused Laelia’s condition. If  we do find out, and it matches something on their list, then we can stay.  Just having the diagnosis of amyoplasia isn’t enough. They need to know what caused it. I told her (the neurologist) that back  when we were diagnosed  we were told a “vascular accident”  caused it. The neurologist wasn’t sure about that. “How would  a vascular accident  effect her whole body like this? It  would have to be a vascular accident to the spinal cord,  which I don’t see evidence for.”

So what? She was just born that way!? We’ve been telling people for eight months  that  Laelie had an accident when she was still inside my tummy, just like people have car accidents and need to go to the doctor.  Now  she was just born this way?

It’s scary that this “just happened” to my daughter, but in some ways I think that makes me feel better. Like maybe something inside me didn’t break her.  Once after being asked by my doctor if I would have more children, I told him that I couldn’t because, “my  womb eats children.”  I said that! Now I find out that it may just be a random mutation that caused this. And, yes, that may screw her chances for programs, clinics and funding for studies, because they don’t know what caused this, but it would also  mean there was nothing I could have done. I can’t tell you how many times I have beat myself up thinking about if only I had  conceived later  or been more responsible about when  to start a family, then she wouldn’t have been born this way. Now I might be able to say there was no accident. This is how she was born. This is normal for her.

I met a little girl around seven years old  at this clinic  who didn’t even have a diagnosis. How terrible! Imagine how hard it is for that baby girl to get through the system. At least we have a diagnosis!

We’ll  go back to the clinic in August. But in July I have to gather information about my family to see if there is any way this could be genetic. So ATTENTION FAMILY!!! Please let us know the health background of everyone related to Laelia, if you know!  Even minor things related to their  health or  body that were unusual.  Please email me what you find! Thanks so much!

Baby didn’t handle the day of Children’s Hospital very well. She missed her nap and didn’t eat very well. Then she cried a lot at night, and now she has a slight fever. Actually so do I. I went to the doctor  on  Friday  the 13th  and got some blood work too. Of course it didn’t take five hours so baby and I aren’t even yet. :)

Speaking of blood work,  that was a HORRIBLE experience. It was the last thing Laelie had to do that day. We get her in there and the lady taking her blood just says, “This won’t work,” so many times! She looks at me accusingly and says, “I can’t turn her arms around! She doesn’t have an inner elbow! This won’t work.” Excuse me! Then she ties up baby’s arm and flicks several places, unties it, ties up the other one, says like clockwork, “This won’t work,” and gets out a hot pad. At this point Little Laelie Love is crying. Then I go on the offensive. “Excuse me, (drawing myself up tall)  but how long have you worked with children? Do you have any experience? Have you ever drawn blood from a disabled child?” Six years. Red Cross.  “Cerebral palsy and others.”  Then her, “This won’t work,” became, “This won’t be easy,” with only a modicum of difference in tone.  We finally did  find a vein in her hand below the second knuckle. That hurt! It’s at this point, while I’m holding her arm still, that I remember that one time I took a friend to Urgent Care and they took her blood.. and I passed out just from watching! So I almost lost it and  I  wasn’t even looking! Then I take a long time to get her back to the car. I bought some bottled water and put my head between my knees.  Ugh. Charley had to rescue me during his lunch break. He went back to work when  my nausea passed. Such a good daddy.

One thing the doctors did tell me was that there were no cures and no new studies or treatments for what my daughter has.  This condition is  very rare,  and throwing a lot of time into studies for it wouldn’t help that many other kids. There’s no way to grow muscles. There  are  no transplant surgeries I can put her on a list for. It’s not like when your kidney fails and you get a new one. I started to cry when they told me all  this which immediately got a social worker tossed my way. It just felt like another denial. Not as bad as getting denied for daycare, but we still kindof are getting denied for this clinic unless something changes.

Another thing I learned from this clinic is that we have the best OT! We were given a free therapist session (second opinion) and we were told the name of the best hand specialist who could help us, and it happened to be the one we have!

Another other  thing I learned from this clinic, is  that out of all the staff of  Children’s Hospital–a  ton of  college-educated, medical professionals who have “arthrogryposis amyoplasia” rolling off their tongues–not one single one could pronounce my daughter’s name. I’m starting to feel like I named her Xypoljamida. (It’s pronounced “Bob.”) :)

AMCers to keep in your thoughts and prayers

Sunday, June 8th, 2008

 

It’s a busy week for me and my friends!

Laelia – She has her muscle clinic on Wednesday that we got her in using the “back door” so to speak. We found out a social worker will be there to answer questions! We hope she will qualify for the muscle clinic. If she does, she may be eligable for help with durable medical equipment and different devices to bypass muscle use.

Kyle – His parents are the first people with any understanding of AMC  to really reach out to me when we got  Laelia’s diagnosis. Kyle is affected in all four limbs as well. Kyle will need to have surgery on his right foot.   Two bones will be taken out so that his foot will be able to lie flat. Kyle’s last surgery was when  he was 17 months old. He’s now five and understands that surgery is scary. His parents are asking for prayer for him. The surgery is on Wednesday.

Ryan – This little guy is in New Jersey for his Christening this week. He also has all four limbs affected and turned one month old a few days ago. I don’t envy his parents flying back to California with a newborn. *eep* He is also in the first weeks of serial casting which is just hard on everybody.

Michele – Michele works with the YMCA to provide  respite workers for families who have been touched by a disability. We recently were awarded this. Michele told me that she is excited to add  our little one to the system since she is adopting a little girl from India with the same diagnosis! She’ll get to meet her new daughter very soon! I’m hoping to get lots of visits from this little cutie!

Bonnie – This amazing super star is crawling!!!!!!!!!! Here’s a link to her video: LINK! It’s cool, Bonnie gives permission in the video to show everyone. :) Bonnie’s mom, Beverly, has been a huge encouragement to me. She is the one who pulled me out of a dark place after the orthopedic doctors first told us that laelia would never walk. It gives me hope that Laelia will do this someday!

Church support

Sunday, June 8th, 2008

Me and my church peeps!

Laelia holds  court at Sunday brunch.  

I  have continued to be impressed by the support  we’ve received from the little church down the road.    We have just really been shown kindness and generosity since the first time we stepped through the front door after determining that my pregnant tummy needed some churchin’. :)  Actually one of the first people I met was Brenda, who through some preternatural ability asked if I was pregnant even though most of my family had no idea by this point. I wondered aloud on the car ride home if I looked glowing, fat,  terrified or if someone finally guested why I was gracing a church’s pews for the first time in a long while. Actually I’m surprised they didn’t kick me out after my pregnancy hormones and constant all-day morning sickness for 17 straight weeks  made me totally irascible.

Then there’s something about grieving the loss of a fully-functioning child where a church can either  alleviate grief  or complicate it. In this case, my  new-found church was  a balm. Still I wasn’t ready to reach out for help until recently. I have understood for a while that the government was not going to help me get into Together We Grow. In fact,  the system had changed in the last few years to exclude children like mine from getting help with  almost anything, especially day care.  I have heard, “She has fallen through the cracks of the system,” so many times in the last  few months by so many sympathetic people who work within  the system itself. It got to where  we would  get evaluated by  a new program  and immediately start to wonder what stupid technicality they  would use to kick  us out. (Note about her muscle clinic on Wednesday: It turns out she needs to be one of forty muscle conditions to qualify to stay in the clinic. We’re hoping amyoplasia qualifies her.)  So when I finally decided that I cannot do this anymore, and I was  out of ideas, I barely had to  reach out before people  responded.

I wrote a note  about needing help with Laelia’s stretches in the afternoons (one of the biggest things I was counting on Together We Grow to provide), and put my  note in the offering plate  at church.  A few days later  the church secretary/office admin, also known as Chelsea, :) responded. Not by saying she’d pray for me, but by coming over three days last week and doing Laelia’s stretches and PT  in the afternoons!

Also last week I emailed Phyllis from church  about possibly  being  Laelia’s respite provider, since she had experience as a social worker and I thought her kids were adorable. The next thing I know she’s applying  to the YMCA and putting Laelia’s name as the recipient.

Then two weeks ago (I’m not going in any order  here), I met with Rana who invited me to a workout/Bible study on Wednesdays  with daycare provided. Brenda  (the same as mentioned above) came over to my apartment to learn Laelie’s stretches so she could do them while I’m working out!

So last Wednesday I worked out for the first time in a billion years. :)  I felt relaxed knowing my baby was getting her stretches, and I wasn’t going to have to do them! When I went to pick her up, Brenda told me that when  Laelie started to cry (and remember she cries 100% of the time with stretches), all of Lisa’s kids who were also in the nursery started to sing to her to make her feel better. Awwww!  They also walked up to her and said, “Don’t worry baby, we love you.” It’s kids like those who are going to be sympathetic to people with differences. And kids like those that will make kids like mine not feel so isolated.

Then  a few days ago, Chuck and David came over  (bringing  Chinese food) and installed another AC unit in our living room that’s removeable so our apartment manager won’t fuss.

Then  today Lisa gave us a cool toy to help  Laelie with her PT.  (Lisa has been amazing ever since Laelia was born.) And Michele gave us a whole bag of baby oatmeal  (I will never have to buy baby oatmeal as long as I live) since Lacy is mastering solids (what Charley calls “people food”) :)  much faster than Laelie. She also gave us some toy instraments to help with Laelia’s OT. And also  several other people asked about the baby.

I’m trying to remember the conversations Charley and I had about moving  back to Placerville,  since  we at least  had my family up there and really only a few friends down here. Now it’s like we have this amazing support group and I don’t know what we’d do without them.  

I’m so happy my pregnancy hormones (notice I put all blame on the pregnancy) ;) didn’t scare anyone away.