Friday, November 26, 2010

              I know that this blog was written to share Emma's journey with AS, but this experience has been such a journey for me as well. It is not all sunshine and roses in my house. I have some days where I am just plain ticked off at what Angelman Syndrome has done to our lives. I think about what Emma would be doing if she did not have AS. I can actually sit and imagine the conversations I would be having with her today if it were not for this diagnosis. I can honestly say that I despise Angelman Syndrome. This is where the guilt comes in... how can I despise something that is such a big part of my daughter? I recently told a dear friend in the AS community that we would "get through this". We seem to have our bad days at different times, which works great because I know I have someone to pick me back up. After making this statement, I started to think. Emma's life should not be something that I have to "get through". I need to enjoy every moment of the life we have together because I'm just not going to get another.
                This has always been my favorite time of year. We have had a few losses in the family around the holidays in the past several years. Although I think of these people often, I try to not let it damper the holiday spirit. Yesterday I woke up and immediately thought about how fast we were approaching the one year mark to Emma's diagnosis. I thought about how our lives had changed since our last Thanksgiving together. Do I really want to spend every holiday from now on a bitter and angry person because Emma can't tell me with her words what she like on her Thanksgiving plate or what she wants Santa to bring her? No way, I will not let AS sabotage my time with her.
             I know that there will be some rough days ahead. I also know that we will get through them. Emma is so happy and healthy. Our journey will be a different one than we had planned but it will still be a great one. My goal from here on out: I will no longer let my worry over the future, rob me of the days I have with her now.

Friday, November 5, 2010

A Little Late....

Wow! So much has been going on. I guess I have been a little neglectful to this blog. We have sailed right through summer and now I am hearing Christmas songs in stores. I will try to catch everyone up but I am sure I will leave some things out. We had a great summer. I enjoyed every minute I got to spend with our little girl. We had a couple of great beach trips thrown in. We got so many great pictures of Emma enjoying her wagon on the beach. I hope that next year we have pictures of her running on the beach. We shall see! The Anat Baniel Therapy has been going great. I have noticed so many differences. Emma was never really transitioning into and out of sitting until we started this therapy. Now I am happy to announce that the baby proofing has begun! Emma is pulling up, cruising furniture, and can beat me in an army crawl across the room. Still not putting her hands down to crawl but she gets where she needs to go. She also is doing well pushing her walker around the house.

We have continued to work on the Alphabet Therapy with Emma. She really has done well with that. I think I mentioned in an earlier post that she has learned to identify her colors. We are working on shapes now. I am in awe at our sweet girl. She knows so much! She is showing me everyday how much she really does understand. How incredibly frustrating it must be to understand what people are saying, to have your own thoughts and feelings, but have a body that does not cooperate in sharing them. We will go in January to see a specialist who will advise us into which augmentative communication device will be best for Emma. Until then, we continue to work on using picture cards for communication.

Well our first Fall Fundraiser to benefit Angelman Syndrome, was held last weekend. It was so much fun and I am extremely happy that we things went so smoothly. We raised almost 3,000 dollars for research. A huge thank you to our wonderful friends and family that worked so hard to help the day become a success and to everyone that joined us for our first festival. We would never have been able to do it without you! We love you all very much!
We are going to take a little fundraising break before we start planning for our golf tournament in the spring.

Brian, Emma, and I are headed to Nashville this week. We have enrolled Emma in the Natural History Project at Vanderbilt University. She will see some of the top neurologists and geneticists associated with Angelman Syndrome. I am looking forward to spending some much needed time with my family. I hope that one day we will make this trip to start Emma in some sort of clinical trial for a treatment for AS. I think about this every day and will never give up hope that the day will come. One of our many dreams for Emma is that she will one day be able to say the many things on her mind including a thank you to all that have supported her.

Tuesday, July 20, 2010

New Friends

We took Emma to Nashville in June for an Alphabet Therapy Workshop. We took away a lot of information that will help us teach Emma. The workshop was very inspiring and made me excited of the things to come for our girl. Emma leaned very quickly that it was work. We have been trying to do a session a day at home. She has already learned four colors. We are very proud of her. The most challenging part is getting Emma to cooperate. She is one stubborn little girl!
The most exciting part of our trip was the opportunity we had to connect with other angel families. It is strange how connected you feel to people you have never met. I wanted to just reach out and hug them all. We only had a little time to spend together but the relationships formed are like no other. We will forever be connected. I look forward to watching our children grow together.

New Friends

Sunday, July 4, 2010

New Friends

Emma's diagnosis is and will be the hardest thing that I have ever had to face. I am so greatful for the other mom's that I have met that give me hope and inspiration everyday. I turn to you now on my darkest days. This says it better than I ever could....

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine.

Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

-by Maureen K. Higgins

Tuesday, June 1, 2010

God brings people into your life for a season and a reason. Some stay for a short time and some stay forever. Some stay for the spring and fall (planting and harvest) and disapear in the heat of the summer or the harshness of winter.Some have only sent postcards and or never showed up after I moved to"HOLLAND" . Thank to my seasoned and weathered friends especially those who vist me in Holland now and then!

Sunday, May 9, 2010

Mothers Day as a Special Needs Mama

On Holidays, I often find myself thinking about where we were last year at the same time. I find myself remembering times where we had no idea the battle we were about to start. Mothers Day 2009, we were still in the realm of normal. I had no idea that I was a mother of a special needs child. I thought my life would be just as we had planned. I was excited thinking about the card Emma would probably make for me the following year. Excited thinking about the beach trips that would follow the following year. How different things would be when she was running around. Little did I know, a year later our lives would be so different. As the months go by, I am still getting used to the diagnosis. I know that Emma will one day make me a card and that she will run at the beach. What I have not gotten used to is this uncharted territory of being different. I feel that my entire life has been so "normal". Everything has gone by the book. It is as if Brian and I had been floating in this bubble of normal, until Angelman Syndrome popped it. It is sometimes scary knowing that we won't ever fit that "typical family mold" again. It sometimes feels that I am on the outside looking in at a world of typical families that we are not a part of. As time goes by, I am sure that this new life of ours will become our new normal. As different as it feels, I can't stress how unbelievably blessed I am to have this child in our lives. I see this sweet little soul who works so hard at everything she does. She melts hearts with just a smile. She gives so much without needing any words.

A little update on her progress...
We have started Emma on several supplements along with a GFCF Low Glycemic Diet. She has also seen a chiropracter for about a month. We are hoping that these things will also help with seizure control as well as her development. We went through a rought two week patch with seizures that I don't ever want to go back to. My number one goal is to keep Emma healthy! She has been working on sign lanugage and picture exchange. She can sign more (when she wants to) and touch a picture of her banana and milk when she wants them. Emma is also learning to hold onto her walker and take steps behind it. Her new favorite is riding the Gator with Grampa! We have taken some great pictures that I will try to post!

We will be walking in our first Angelman Foundation walk in DC on the 15th. We have raised over 1,000 dollars that will be used for research that I am whole heartedly supporting. I truely believe that our answer is just a matter of time!

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your ...winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- "Real Love"

Sunday, March 21, 2010

One more mountain to climb

When we found out about Emma's diagnosis, we knew that the simple life that we had wanted to lead was going to take a different turn. Someone that I had met on an online board for families in similar situations had mentioned that this life is a rollercoaster ride. She wrote, "You can't have your ups without your downs." I never realized how true that was until this past week.

We are going through a bit of a rough patch as far as seizures are concerned. We were really praying that we would be in the lucky 20 percent of AS patients that did not have to battle seizures. Emma got a cold about three weeks ago. This seems to have triggered a batch of sleepless nights and days filled with seizures. She is having little episodes of "head drops". They only last a second and don't seem to alarm Emma at all. She goes right back to whatever activity she was doing before. It has put a bend in therapy because we are afraid she will fall and hit her head. I really wanted to keep her off of any medicine as long as I could. This has been a tough decision. We decided to go with the lesser of the two evils (or so we think). We did take her to the doctor today and will start seizure medicine this weekend.

We are keeping her on her GFCF diet. She seems to be doing great on it but one problem we found was that she is getting way to many starches. We have started a Low Glycemic Diet this week. Still pretty healthy and hopefully very positive results! Emma goes and sees a DAN doctor in a few weeks. Rumor has it; she is the same doctor that treated Jenny McCarthy's autistic son. We are also thinking of trying a chiropractor. I have been reading about some really positive results with children with disabilities.

Believe me I have my critics..... I know it sounds like a lot. I have to do these things. I feel like the moment that we stop trying is the moment that we are in a helpless situation. I don't want to look back 10 years from now and say, "only if we had tried the diet or the chiropractor".

A silver lining.... research is so encouraging! I sometimes don't fear the future because I know that the outcome is going to be great. I just got a really interesting article about a new study that will hopefully start drug trials in the near future. Reading about the road these scientists are on is so encouraging! It is truly fascinating what they have been able to find out and some of the things that they hope to try. I still have a lot of faith that the answer will be found!

I will keep you posted on the seizures. Right now, Emma needs your prayers! We know that this is just one of those down times on our rollercoaster ride. This to shall pass and we will pull through just fine.

Sunday, February 28, 2010

I love watching Emma sleep. It gives me time to look at every little feature and think about how beautiful she is. She has been doing a lot of sleeping this week because of her cold. Watching her sleep, is when I do most of my thinking and worrying. Lately I have had those terrible "why me moments". It is almost as if I knew the reason this happened to us then I could fix it and it would go away. So many people have told me, "God gives special children to special people." I just don't agree.... I am not special. I don't think I have any quality that can make me handle this situation any better than anyone else. I am not fearless, I am not selfless, patience... well I am working on it. Maybe Emma is here to teach me these things. Maybe Emma is here to teach the world some things. Her smile alone can teach the world love.
I have been hearing this song lately and the tears start everytime.....

"I believe there are angels among us. Sent down to us from somewhere up above. They come to you and me in our darkest hour, to teach us how to live, teach us how to give, to guide us with the light of love".

I am learning to not have pity for myself. This is not happening to me, it is happening to Emma. Emma is happy! We won't see her throwing herself a pity party. She has so much to learn but even more than this, we have so much to learn from her!

Monday, February 8, 2010

Great OT Appointment Today!

Just wanted to let everyone know that Emma had a great OT appointment today. This was the first appointment with Miss Sally since November. We are very excited that she will be working with Emma every other week. Miss Emma sure was a show off today. She was up on all fours with minimal support!!! We don't know if she will be much of a crawler but this is still great! She is doing so well at standing that we all think she is going to jump right to walking. She played with some new toys.... and played with them the right way! We were impressed at how she was opening and closing the buttons on one of the toys. She worked with markers and paper for the first time! Of course Emma wanted the marker in her mouth but it is something we will be working on. She also got to play with a Magna Doodle... I am going out to get her one of her own this week! Emma is doing so great and we know that she will surprise us all.

Tuesday, February 2, 2010

Read this poem today.....

Hi! This poem was on a friend's blog and thought that I would share....

Welcome to Holland

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it , to imagine how it would feel. It's like this.....

When you're going to have a baby it's like planning a vacation trip-- to Italy. You buy a bunch of guide-books and make your wonderful plans.

The Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"HOLLAND!?!" you say, "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy! All my life I’ve dreamed of going to Italy". But there's been a change in flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you will learn a whole new language. And you will meet a whole new group of people you never would have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned".

And the loss of that will never, ever go away, because the loss of that dream is a significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

……Emily Pearl Kingsley (founder of the USA Down Syndrome Association)

(Reproduced from AFASIC News No. 78 May 1995)

I know this is how we feel and will always feel about our Emma. What a sweet girl! There is not a day that goes by that I don't think about how much joy she has brought us, how much joy she will continue to bring us, and how lucky we are to have her!

Sunday, January 24, 2010

New Diet

Ok... we are starting week 2 of the GGCF diet. So far so good. Emma has been a little cranky, but I would be too if I had gone without real bread and cheese for a week. I am so glad the girl is not picky when it comes to food! She is munching on a bake potato as I am typing this. (Thank goodness she can have her starches!) She is making that "uummmmm" sound she makes when she is really enjoying her meal! Aunt Lynn brought us a great cookbook and I have planned a couple of meals for the week. (We won't tell Brian what is in them)
We have an EEG scheduled for tomorrow morning. We have to keep Emma up late tonight and wake her early tomorrow. This should be an experience! I don't know how she is going to handle having things stuck all over her head. This is the baby that squirms and giggles when the doctor is measuring her head. I will be sure to bring my camera. Wish us lots of luck with that!

Monday, January 18, 2010

The Beginning....

We want to thank all of our friends and family for the support that you have given us over the last few weeks. We feel blessed that you will be sharing this journey with us. I decided to start this blog to keep you all updated on the great things happening in our lives. Even though we just received life changing news, our lives really have not changed very much at all. One of the first things Brian said was, "Emma is still the same little girl we loved before the diagnosis." How right he is! I can't believe how lucky we are to have her. I have never seen such a sweet, beautiful, happy child in my entire life. I am not just saying that because I am her mother. She seems to touch everyone that meets her. Walking through the mall with her, you feel like a celebriety (even more now with the glasses). She gets so many smiles and comments about how cute she is. We have a great life and although we now have Angelman Syndrome in our lives, it will still be great. Emma is going to do great things. I believe that she might do more now then she would have without AS. We have met people all over the world and know that we have friends in so many places now!    
          I am working on a website for Emma that will also give you the information that I am learning about Angelman Syndrome. I am so excited about all of the therapy opportunities and the research that is being done. We are so proud of Emma and feel that she is going great at 16 months. We will make sure that she gets every therapy opportunity that is out there. We want to start hippo therapy with Emma, which can begin at the age of two. We are already one step ahead, as Emma had her first experience on our horse this past weekend. She had a smile on her face from the time she got on and even cried when we took her off! Watch out cousin Jaynee, Emma might take that state title from you one day!
       I have also met several families who have had wonderful outcomes by changing their childrens diet. Sorry Emma, no more Kraft Mac-N-Cheese! We are transistioning her to a glueton and casen free diet. So far she has loved everything that we have given her. Things won't really change in her diet too much, no more processed foods and more fresh fruits and veggies. Really, we all should be eating like this.
       We have a meeting with her therapist coordinator today to find out more about more therapy opportunities for her. She will start speech therapy right away. She actually was released from speach at 12 months because she was babbling so much. We know Emma has lots to say and will be able to tell us everything one day!
       Check back often for updates and pictures. I will let you know when we have her website up and running. Thanks again for your thoughts and prayers!