Our "New" Bike Trailer

A good friend found me a steal of a deal on a bike trailer at her neighbor's garage sale that I just couldn't pass up. Molly and Lexie fought to keep riding in it all night that night. We even put Annie in it and she did alright, but didn't seem quite as thrilled as the other two. It will be fun to have for rides around the lake so close to our house!

A Reminder We're Still In Holland

For those of you not familiar with the “Welcome to Holland” story, you can read it here.  It is a wonderful analogy of how raising a child with special needs is like going on a trip to Italy, yet you somehow end up in Holland… just you—your friends have all still landed safely in Italy.  You never asked to go to Holland, and you desperately long to be in Italy, although you do discover that there are wonderful things about Holland.  (My summary just isn’t doing the story justice, so if you haven’t read it before, please just stop a minute and click here to read it.  It really is a beautiful analogy.  Go read it.  It’s short—I’ll wait.)

This month has been a strong reminder for us that we are still in Holland—our lives are so different from most people’s—so different that not only can’t our friends and family relate, but only a couple of our Aicardi Syndrome friends can relate—just the couple Aicardi families that are Mormon.  Let me explain…

Annie is turning 8 years old on Monday which is a milestone birthday in the Mormon Church.  It is an event with special religious significance and is accompanied with an ordinance (or a sacramental event to mark the child’s growth, awareness, and ability to choose a life that follows Jesus’s example).  Because of Annie’s disability, she will not be able to participate in yet another milestone.  Each missed milestone, each lost experience, each reminder of what we can’t share with our daughter causes more grief and mourning.  This was true the first time I realized my baby couldn’t sit up or roll over when all the other babies her age could, each time my baby had a seizure and no one else even noticed, and especially when Annie was a year old and people would ask if she’s walking yet. 

On the other hand, Annie’s 8th birthday is an event that we honestly never imagined being able to celebrate with her.  We are so incredibly grateful to have Annie with us and be able to celebrate yet one more birthday with her.  Before her birth, our doctors told us that if Annie happened to survive birth, she would most likely only live for a couple weeks or months, a couple years at best.  At that point in our lives, we never imagined that she could be here today as a happy 8-year old about to celebrate another birthday.  We are so grateful for the answers to prayers, and to be given so much more time with Annie than we had ever dreamed when she was born.  However, we are also reminded of the loss of the child we dreamed of having so long ago.

Chronic Sorrow

Most people probably look at us the think that raising a severely disabled child isn’t too difficult, and honestly most days it’s not.  Yet I have nothing to compare it to.  This is the only life I’ve ever known as a mother—since Annie is our oldest child, I don’t know what it is like to be a mother of only typical children.  Yet what most people probably don’t realize is the chronic sorrow that is weaved throughout our lives. I imagine most people believe that we grieved when Annie was born, but have since then accepted her disability and are just a happy family now—which is partly true.  We have accepted Annie’s disability and do consider ourselves a very happy family, but what most people don’t realize, is that just because we have accepted her disability, it doesn’t mean that we don’t continue to cycle through periods of grief and mourning.

Another Aicardi mother introduced me to the concept of “chronic sorrow” shortly after Annie was born—a term used to describe the long-term reaction of parents who have a child with a disability.  A wonderful description of chronic sorrow can be found here.  In short, chronic sorrow describes the repeated grieving process that parents of children with disabilities go through.  It helps describe how parents repeatedly cycle through all the stages of grief as different milestones are missed, new diagnoses are given, or new health challenges are presented throughout the child’s life.  Annie’s 8th birthday is yet another one of those milestones that has brought mixed feelings—those of sorrow and grief, yet also feelings of gratitude and joy.

Baptism in the Mormon Church

For those of you not familiar with the Mormon Church, let me explain why a child’s 8th birthday is such a big milestone.  In the Mormon Church, children are not baptized as infants, but as 8-year olds—the age at which children can become accountable for their own actions.  By 8 years of age, we believe that a child understands right from wrong.  We believe baptism signifies that a person is willing to accept Christ and to follow Him.  Baptism is an action, performed by someone with the proper authority, which starts a person on the path to return to our Heavenly Father.  A person must choose for themselves to enter into the covenant of baptism.

Annie will not be baptized because she is not capable of being held accountable for her own actions due to her disability.  She is not capable of choosing for herself to be baptized, and most importantly, she will never be capable of sin.  (Not to mention that Mormon baptism is by immersion and Annie is not capable of holding her breath!)  We believe that Annie is guaranteed a free ticket to return home to live with her Heavenly Father because of the sacrifice and Atonement of Jesus Christ.  Because of Christ, Annie does not need to prove herself in this life.  Instead, her purpose has been to come to earth in order to receive a body and teach others of love, patience, and how to serve.  We are so incredibly blessed and humbled to have a child that has no need of baptism—a child that we know without a doubt will return to live with her Heavenly Father.  I continue to be amazed and humbled that Heavenly Father has entrusted us with one of his choicest spirits.

Yet, despite the joy that reassurance brings, missing this baptismal milestone is still painful.  While several of my friends are joyfully planning their child’s baptism, I desperately long to be doing the same with my daughter.

White Dresses

We have learned that buying 8 year old girls white dresses around their baptisms is a big tradition here.  Moms have talked about how fun it has been to find just the perfect white dress for their daughter’s baptism.  I too have taken notice of several beautiful white dresses at department stores in the past, but I always see them and think how beautiful they would be for Annie’s burial.  I never considered why stores sold beautiful white dresses for little girls.

Once while window shopping several years ago, Justin and I came across the most beautiful but simple white dress we’d ever seen.  We both looked at each other and knew that was the type of dress we wanted Annie buried in.  We debated whether to buy it since it was so perfect, yet we realized we have no idea what size Annie will be when she passes.  In this sense, I am so different from everyone else.  I’ve been trained to see little girls’ white dresses for funerals rather than baptism or first communion.

The past few months have been more difficult for us emotionally, not only as we have anticipated Annie’s 8th birthday, but also because of the deaths of several Aicardi girls.  Most heart-wrenching was the passing of Annie’s Aicardi sister here in Omaha.  We attended Regan’s viewing with Annie, and wept for her family and ours, knowing we will be the ones standing next to our own daughter’s casket some day.  Since Regan’s passing in February, at least four other Aicardi angels have also received their wings.  Each time we receive the news of another passing, we face our own family’s reality again.  I want to hug Annie tighter, hold her longer, and pray that we’ll have several more years with her here on earth.  No parent should ever have to bury their child.

So while we grieve over the loss of the typical 8 year old birthday that we will miss with Annie, we are so grateful that she has a celestial spirit.  She brings the Holy Ghost into our home so strongly.  After the passing of another Aicardi angel, her mother told me that it’s the quiet moments alone with Carmen she misses most.  Since then I’ve tried harder to make sure I have my quiet moments with Annie, rocking her and talking to her, reading her a book, or just quietly trying to imagine her thoughts.  She allows the Spirit to touch my heart and I know that she is celestial and perfect.

So even though I will never be able to see Annie get baptized, or get married; although I will never hear her tell me she loves me, or feel her arms around my neck, although I will never be able to hear her call me Mommy and have her run and jump into my arms, I do know that she will be my child forever.  I am so grateful that I have been sealed by the priesthood to my family in the temple.  I know that we will live together as a family after this life.  I am excited for that day when I will be able to see Annie as a perfect being in heaven—to see her dance, feel her hug me, and sit and listen to all she has to tell me.

So here is another postcard from Holland.  I hope that through writing this those of you in Italy might understand just a little better what it’s like here in Holland.  Although it is lonely and very difficult at times, I can’t imagine not experiencing this life I’ve been given with Annie.  I am so grateful for Annie and feel so incredibly blessed to be able to celebrate another birthday with her.  Happy Birthday, Annie!  We love you always and forever!

The Magic Gloves

I never use gloves when doing the dishes, but my mom does, so she bought some while she was visiting a few weeks ago.  Who knew that gloves could be so magical in getting Molly to do the dishes!  She's so excited to help out with the dishes now, as long as she gets to wear her gloves!  Now, if there were only a magic way to get her to hang up clothes and keep her room clean!

Notice how the dishes have been put into the dishwasher. I guess we'll have to work on that part!

Annie's Ophthalmology and Neurology Appointments

Annie saw her ophthalmologist on Monday for a routine check-up.  She's required by the FDA to have her vision checked every three months because her seizure drug, Vigabatrin, can cause vision loss.  This is why Vigabatrin only got FDA approved last fall, although Annie started taking it when she was about 4 months old.  (Until last fall, we were getting her Vigabatrin from a Canadian pharmacy, which didn't accept U.S. insurance, obviously, so we are VERY grateful to now be able to get this drug in the U.S.)

We understood the vision risks when we started Annie on this drug almost 8 years ago, but Vigabatrin is the most effective drug in treating the type of seizures that Annie has most often.  We have been very pleased with the level of seizure control, and so far she has not had any functional change in her vision.  Since she started Vigabatrin, Annie's holes in her retinas (called retinal lacunae which are a marker for Aicardi Syndrome) have changed just slightly--some have gotten slightly bigger, and others have merged together, but since most of her lacunae are in her peripheral vision, none of these changes have effected her central, functional vision.  It's also difficult to know if these changes are due to the Vigabatrin, or if these changes would have taken place even without taking it.

Annie has been diagnosed as legally blind, which allows her to get vision therapy at school to help keep her vision as good as possible.  I think the doctor was willing to define her as legally blind because her vision impairments are rather significant and cannot be corrected.  (We usually explain to people that Annie's vision appears as Swiss cheese.)  The area around her optic nerve is fairly clear from lacunae, so we know that when her eyes are looking directly at something, she does see it pretty well, although her peripheral vision is somewhat limited.

So, back to her eye appointment on Monday... the doctor didn't notice any change in her lacunae or peripheral vision since last year.  Annie's prescription did change on one eye though.  When she was born she was far-sighted in her left eye and near-sighted in her right eye--one reason she perked up once she got glasses at 7 months old!  Over the last couple years, her near-sighted eye has resolved itself and this past year she's had just a clear lens for that eye.  Today however, we learned that near-sighted eye has now become slightly far-sighted!  So Annie will be getting new glasses in the next couple of weeks.  The ophthalmologist also didn't see any evidence of crossing, so we're glad that's gradually resolving itself.  Her muscle relaxant, baclofen, has been causing more crossing the last couple years because it has been relaxing the muscles around her eyes, but last October we decreased her baclofen dose in preparation for surgery, so that has helped improve the crossing.

On Tuesday we then saw Annie's neurologist.  Even though Annie's myoclonic seizures have increased slightly over the last couple months, we aren't increasing her Vigabatrin quite yet.  She has only gained just a few pounds since her last dose increase, and since her seizures aren't really bad, we'll wait to see what happens.  Her grand mal seizures have not increased--she still has one about every month or two, but they are only requiring emergency Diastat about every 4-6 months.  Her myoclonic seizures used to be about once or twice a week, but now they are happening about five times a week or more.  That's still pretty good control, so we'll just watch how they do.

I consider myself very lucky in regards to seizures.  Most people wouldn't think that "good control" would mean almost one seizure a day or even a week, but it's really all relative for us.  Eliminating seizures completely is nearly impossible with Aicardi Syndrome.  Annie's first year was so difficult with seizures--having as many as 20-30 a day, with 90 one day as her record--that we really do feel like Annie has excellent control with drug side effects really at a minimum.  Most other Aicardi girls continually struggle with seizure control, constantly adding new drugs and weaning off others, some needing the VNS stimulator implanted.  We're so grateful that seizures really haven't been such a difficult thing for us.  Now her vomitting... that's another issue!

Annie's neurologist inquired about her baclofen dose and why it was so low and why she's even on it since her highest tone areas were surgically corrected several months ago.  Since her three orthopedists didn't feel comfortable making a decision regarding her baclofen dose, we decided to wait to see her developmental pediatrician at the CDC clinic this summer, who has been monitoring her baclofen use.  We thought at that point we could ask him if we can take her off baclofen completely, but today our neurologist took that into his own hands.  He suggested we slowly wean her off the baclofen, and if we see that her tone is increasing, instructed us to wean her back up to a dose we're happy with.  But her dose is so incredibly small right now that we doubt it's having any affect on her tone at all.  So we've started weaning her off the baclofen.  It will be nice not to have any drugs we have to give her in the middle of the day now--and not have to worry about meds administration at school anymore.  Hopefully stopping the baclofen won't increase the tone in her knee and ankle, but maybe it will help increase the tone in her throat just enough to help prevent a little bit of her apnea, although I doubt it.

Well, who knew that two such routine appointments could turn into such a long blog post?!  I guess I just feel like since we moved, not many people still know very much about Annie.  Anyway, thanks to those who read this far!  Hopefully this helps at least give some insight as to how Annie sees.

Grandma and Grandpa Oldroyd Come to Visit

Jodi's parents came to visit last week and we had so much fun!  Annie was in school and missed out on a lot of our fun, but she definitely enjoyed the zoo on Saturday.  Thanks for coming, Grandma and Grandpa!

We went to the Gene Leahy Mall downtown one morning.  Molly refused to go down the huge slides, but Lexie enjoyed them.

The zoo on Saturday was fun too, but everyone got worn out from trying to cover the entire zoo in one day!

Lexie got some cool sunglasses from the pediatrician a few weeks ago and really loves them.  Even in the morning when she comes up from her basement bedroom she thinks the kitchen is too bright.  This is her solution:

Annie is Standing Again!

At Annie's last orthopedist appointment we got the green light for Annie to start standing again.  It has been a little over a year since she has been in her stander. Late last winter just over a year ago, Annie out-grew her AFOs (which she MUST wear in order to stand).  She was getting bad pressure sores because of her tight ankle, so she stopped standing.  Then we moved, and the first time we saw the new orthopedist it was confirmed that Annie DID desperately need her heel cord lengthened.  So we waited to have her healed from that surgery (which was only in December 2009 due to other surgeries and complications).  She also had knee surgery, so we've also had to wait for her knee to heal before she could start standing again.  But now she's back in it!

I obviously had to do lots of adjusting since she had grown so much taller in the last year--she's now 53".  I expected her to scream and yell and cry immediately, but she actually tolerated it extremely well!  I put her in, made all the adjustments and she was still doing fine after 15 minutes, so I grabbed the camera since I was so impressed!  I guess those last couple minutes it took me to snap the pictures was a little too long--she's not looking too happy in the pictures--but I'm so proud of her for being such a trooper in her stander today!  Annie has also been starting to stand every day at school and is already doing 25-30 minutes pretty consistently!  She's never done so well in her stander!  Maybe all the surgeries have helped somehow!  Way to go, Annie! 

You might be wondering why Annie needs to stand in a stander, especially when she will never be capable of walking or standing on her own.... Well, let me give you some reasons why non-ambulatory children can benefit from a standing program. 

• Strengthens trunk and lower extremities
• Allows for stretching and prevention of contractures
• Improves circulation
• Improves respiratory function--decreases risk of upper respiratory infections and pneumonia
• Improves bowel and bladder function
• Facilitates skeletal development--helps to keep joints strong
• Improves bone density--decreases risk for fractures
• Helps increase the depth of the acetabulum for hip joint development
• Normalizes postural tone
• Decreases risk of skin breakdown--allows for a different positional change
• Provides a new visual perspective of the environment
• Allows non-ambulatory children to interact with their peers on a more even level

Sunday Morning Photo Shoot

I grabbed my camera quick this morning for some portraits of the kids before their hair got all messed up.  I'm generally pleased with how these turned out, but I know they could be better.  I was a little disappointed with some blown out areas on Molly's and Lexie's horizontal shots, a little on Annie's too, but I'm still practicing.   I really need to start shooting in RAW in order to get my images to really pop, but my current photo editor isn't compatible with RAW images.  So I think I'm going to have to bite the bullet and learn Photoshop. 

I am learning SO much about photography every day, mostly from a child/family photography forum I joined.  One thing they have really stressed to newbies like me is how important it is to put a watermark on your images, even if you're not even close to being professional, to just protect other people from stealing your images for other use.  (Most women in the forum are like me--just moms who want to be able to take great pictures, but a few actually do have their own businesses.)  So, I made a cute little watermark you'll see on the pictures.  I know... it seems a little silly right now when I can't imagine anyone wanting to steal my pictures for anything, but better safe than sorry.  (Grandmas... I do have copies without the watermark that I'll send you if you want copies of anything.)

So, hopefully you can start seeing an improvement in my photo quality as I progress and learn more.  (Maybe I should make a separate photography blog.)  So, in addition to still working on exposure and lighting, the next challenge is shooting in RAW and learning Photoshop!

I LOVE My New Camera!!

I've had my new SLR camera for a week now, and my portrait lens for just a day, so I still have a LOT to learn, but here are some of my favorite shots over the last week.  I still need to learn to get my images a little crisper, especially with moving kids at a large aperture, but I thought these were somewhat decent.  I love being able to set my own camera settings and not have to use a flash anymore! 

My kids have been pretty good to pose for me a lot this last week, but as of yesterday, they are DONE!  I think they are sick of having their picture taken unless I can get them pretty distracted--like the pictures below that I took outside today.  So, if anyone wants to lend me their kids, I could always use more practice!

Basement Construction Zone

Just a few weeks before our home warranty expired we noticed that there was a large lump in the floor of our basement.  Our builder figured out that the concrete underneath had moved and buckled, so we got that all fixed this past week.  It was quite the project, but fortunately it was all still covered under our warranty.  It actually only took 3 days--one day they cut the carpet and pulled it all back, the next day they cut the concrete and jackhammered up that cut portion, then poured new concrete, and the third day they re-laid the carpet.  They all did such a great job that you'd never be able to tell that we had our basement ripped up a few days ago.

Some Pictures from March

Molly turned 5 this month!

  Her "birthday wish came true".... a bike!

And it's finally warm enough to go for walks!  (Lexie fell asleep in the backpack!)

Lexie is looking so cute in her summer clothes and ponytail!

And Justin loves making cookies with the kids. 

(Lexie's friend Spencer was on loan to us for a few hours--Justin needs some time with a boy around the house.)