A poem that touched my heart...

I Am The Child

I am the child who cannot talk. You often pity me, I see it in your eyes.
You wonder how much I am aware of. I see that as well. I am aware of
much ... whether you are happy or sad or fearful, patient or impatient,
full of love and desire, or if you are just doing your duty by me. I marvel
at your frustration, knowing mine to be far greater, for I cannot express
myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift
you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well
being, sharing my needs, or comments about the world about me. I do not give
you rewards as defined by the world's standards.. great strides in development
that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable... I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of
your love, your commitment, your patience, your abilities; the opportunity to
explore your spirit more deeply than you imagined possible. I drive you
further than you would ever go on your own, working harder, seeking answers
to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the
longing in my eyes to get out of this chair, to run and play like other
children. There is much you take for granted. I want the toys on the shelf,
I need to go to the bathroom, oh I've dropped my fork again. I am dependant
on you in these ways. My gift to you is to make you more aware of your great
fortune, your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them. I feel not
so much envy as desire, desire to stand upright, to put one foot in front of
the other, to be independent. I give you awareness. I am the child who
cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me
by the world's measuring stick, what I do know is infinite joy in simple
things. I am not burdened as you are with the strife's and conflicts of a more
complicated life. My gift to you is to grant you the freedom to enjoy things
as a child, to teach you how much your arms around me mean, to give you
love. I give you the gift of simplicity. I am the child who is mentally
impaired.

I am the disabled child. I am your teacher. if you allow me, I will teach you
what is really important in life. I will give you and teach you unconditional
love. I gift you with my innocent trust, my dependency upon you. I teach you
about how precious this life is and about not taking things for granted. I
teach you about forgetting your own needs and desires and dreams. I teach
you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

And she stands!

    Well, it has been a while- I know!  With a new blog post comes exciting news- Lucy has learned to pull up to standing by herself. In typical Lucyann fashion, she went months without making any gains developmentally and then WHAM- one day she stood up on her own!  We are absolutely thrilled with her progress and are increasingly hopeful that she will one day (hopefully sooner than later) walk. Each day she gets quicker standing up. As of today, she even can crawl into her sister's mini recliner and stand up on it! 
    Not only is she standing, but she also is making her desires known- not so much with words, but with screams and yells. I guess we will take what we can get. Gone too is the child who didn't know she had hands for the first many months of life. Lucyann is now into everything...I mean EVERYTHING.  If you set her free in a room for an hour, you wouldn't believe the messes she is capable of making. It may sound ridiculous to those of you who have children, but I never thought Lucy would ever make the kind of messes Janna did as a toddler. Who am I kidding?  To this day, "captain destructo" AKA Janna is notorious for destroying a house in a manner of seconds. Believe me, Lucyann is doing her best to keep up with her.
    The large majority of Lucyann's messes are found in the kitchen. With her new developmental milestones she is hitting, she is also exploring new textures and tastes of food. The luxury of having a "normal" toddler feeding themselves finger foods was something I had thought we would never be able to experience with Lucy. However, as with most expectations I had previously set for Lucyann, she has proven me wrong. Her choice foods to feed herself include bananas, crackers, apples, and most exciting, bottles! 
    Another development for Lucy has been her sleeping. For most of her life, she has woken up several times a night unable to sleep. After meeting with her pediatrician and neurologist, we tried several sleep aids to help her sleep- not so much for her, but for her sleep deprived parents. Both prescription medications and melatonin worked wonders- for a matter of days. Long term results were not what we had desired however. Her mean mother was fed up with the nightly disturbances of her REM cycle and invented the "cry crib" in the living room to put Lucy in during the night. A few weeks of nightly screaming fits by herself in the cry crib must have worked wonders because Lucy has, knock on wood, slept all night in her bed for 2 months straight! 

   More updates to come soon- Lucy will be a big sister in March. That will be an interesting experience.

Summer update

Well, I know, I have not been very good about updating this blog over the summer. I guess you could say that I was a bit frazzled the last time I posted. A couple month hiatus from the blog and working to "just" being a mommy for the summer was just what I needed.

The summer started out with us "looking forward" to Lucyanns's surgery to remove her tonsils and adenoids. On June 17th Lucy had the surgery and it went as well as expected. However, Lucy the happy child was replaced with a grumpy, fussy, pain ridden child from who-knows where. A week and a half of this almost drove both Lucy and her mom insane! Thus the reason her mother put her in her room to cry it out- only to find her in a pool of blood and very, very unhappy. A visit to the er and another 2 day admission to the hospital (you are welcome St. Mary's for keeping you in business!) and we were back home. Heaven forbid we have a week without a catastrophe because Janna decided it would be fantastic if she fell off the couch and busted her tooth out...another visit to the er. The next couple weeks returned to our semi-normal life and we started looking forward to our few summer trips, one of which was the the Angelman Syndrome conference in Salt Lake City.

Jason and I traveled to Salt Lake by ourselves to the conference thanks to my amazing in-laws! Leaving the girls overnight was very worrisome to me knowing that Lucy has a very specific routine that she thrives on. I did remember to tell my mother-in-law about the sleeping pills and how she needed to make sure Lucy was well fed right before she goes to bed. I forgot, however to mention how she usually wakes up early and likes to cuddle with mommy and daddy before falling back to sleep. Whoops. Needless to say, first day away proved to be less than ideal.

The conference itself was okay. I was expecting to return from the conference with a new found empowerment and tons of new information. However, I was left feeling slightly disillusioned. Seeing most of the Angelman's children there in wheelchairs, not walking or talking much brought a reality that I wasn't prepared for. We came home with a renewed sense of loss.

Lucy though, has a way of proving everyone wrong. Coming home from the conference thinking we would have a wheelchair bound child forever was just what Lucy wanted to prove wrong. Within 2 days of being home, Lucy decided she would do several new, BIG things! First, she started putting everything in her mouth. You must understand that Lucy never went through the phase of oral exploration so this is a huge step! Secondly, Lucy decided it was time to sit up on her own! She can now roll around, pivot herself to her side, then sit up! This is HUGE! Her therapist says that it is a sign that if a child sits up on their own by 2.5, they will most likely walk. Seeing as she is well before this age, we are ecstatic. Finally, Lucy can also get herself up to a crawling position. We are hoping that in the next couple months, she will start crawling. Months and months of practicing all these skills have finally paid off.

Here are some pictures of her progress!

Back to the hospital...

Well, we are back in the hospital with Lucy. On Thursday she managed to have 7 seizures throughout the day. After seizure 3 we took her to the E.R. where, after running what seemed like every test in the book,they admitted her. She was put on an anti-seizure medicine, hooked up to an I.V.,and given an antibiotic for precautionary reasons. No seizures have happened since then. Meanwhile though, she has had difficulty breathing and her oxygen levels have dropped to 70 percent. After being examined by the ear nose and throat doctor(the same one who did her cleft surgery) he discovered that Lucyann has unusually large tonsils and will need to have them removed asap. Seriously, what do we need to do to get a break? As usual, Lucyann is smiling and happy throughout this. I though would be much happier at home! Praying they will let us go this morning.

Baby steps forward and my faith

Yesterday we add our annual meeting with Lucy's therapists and case manager. When she started with Child Find (the early intervention program), she was extremely delayed. They put her abilities into categories such as fine motor, gross motor, cognitive, and feeding (there are several more- just not remembering them). Her fine motor skills when we began therapy were at 4% of other babies her same age. In a year, we have taken baby steps forward and she is now at 24%! All of the categories echoed this same trend. Although she is not ranking high percentage wise, the fact that she made progress is encouraging.

As I was reading through the posts I have made on this blog, I noticed how I have failed to mention a very important thing...my faith.  I went through a time when I was very angry. I felt like somehow my world had come to an end. I turned my back to the one thing that can truely make us stronger, feel comfort and love, and bring hope- our Heavenly Father. I was so angry I wouldn't even turn to him in prayer. It was not until a few weeks ago when I was finally able to "see the light".  I had sat down to mindlessly watch tv and somehow tuned in to my recording of General Conference (a conference where the leaders of our church address its members). I clicked on the first session that came up and immediantly, heard a talk that I felt was specifically given just for me.
The one thing that stood out to me what this quote by Orson F. Whitney:
“No pain that we suffer, no trial that we experience is wasted. … All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

It dawned on me that my precious angel Lucyann was sent to us for a reason. She wasn't sent to a home where she wouldn't be loved, wouldn't be treasured, wouldn't be challanged, or wouldn't be appreciated. She was sent to us by our Heavenly Father because he loves us THAT much. He knew that we could handle raising Janna and Lucyann. The trials we will go through are things that we must go through to someday return to him.

Here is a link to the talk if you are interested...
http://lds.org/general-conference/2011/04/more-than-conquerors-through-him-that-loved-us?lang=eng

New gains for Lucy!

Sorry it has been a while! 

Since finding out Lucyann has Angelmans syndrome, I had found myself expecting her to not make developmental progress very quickly. Well, over the last 10 days, Lucyann has proven us wrong. Not only is she rolling everywhere, but she is also grabbing everything!  You have to understand that for her entire life she has been quite content just being on the floor either on her back or on her stomach. She also had no idea she even had hands which made things like playing with toys, holding a bottle, or feeding herself impossible.

Recently, Lucyann has gained a personality. For example, the other day her sister was on the floor taking a nap with a bottle (don't get me started on why a 3 1/2 year old has a bottle). Lucy saw her from across the room, rolled over to her (at lightning speed), grabbed her bottle, pulled her hair, punched her in the face, and rolled away. Now some of you might feel sorry for Janna at this point... however, Lucy has been stepped on, hit, punched, dropped, and other forms of sisterly abuse by Janna. When Janna is playing with a toy, you can see a twinkle in Lucyann's eye saying "I WILL get that" and off she goes- tormenting her big sister again. We are absolutely ecstatic for this development! 

Our goal with the speech therapist is that Lucyann might one day be able to feed herself. My confidence in this possibility was shrinking. However, Lucy has been reaching for spoons, grabbing her sippy, and fingering for little crackers in front of her. Needless to say, I am one proud Mama!  What a great Mother's Day!

Videos and pictures are soon to come. Unfortunately, I cannot get a picture or video of Lucy without Janna stepping in front of the camera.

Sweet Lucyann

The past couple weeks have been weeks of both reflection and joy. I have spent a lot of time thinking about our beautiful Lucyann. In one of my rare spare moments, I sat down and was able to read a chapter in a wonderful book called "Changed by a Child: Companion notes for parents of a child with a disability". This book was one of a stack of books my dear friend Janelle gave me when we found out what the diagnosis was. While reading, a quote by the famous Mister Rogers really touched my heart. It says,

"No child is "perfectly" whole in mind, body, spirit, ability...nor can any child meet all of a parent's hopes and expectations. Yet there is a wholeness of each and every child, a wholeness that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment.

I am starting to realize that all of us have our own "disabilities". Lucy makes gains every single day. Although she may not ever be able to do what other children do, she has her own strengths. She continually helps me appreciate every single day and I look forward to making memories with this precious child in our family.