tag:blogger.com,1999:blog-35158116443801231722024-02-20T19:25:14.161-08:00Learning How to Bend"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us" - E.M. ForsterJessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-3515811644380123172.post-70277712332003985642012-07-12T13:56:00.000-07:002012-07-12T13:56:41.703-07:00I realize this blog is seriously lacking in pictures. I had bought a domain from Google in order to start a website. I wanted to post videos, pictures, links to AS websites, etc. Truth is, there is no time. I try to keep in touch with families via Facebook and my new obsession..Pintrest. I try to get up early, stay up a little later, and squeeze in five minutes every now in then when the kiddos are playing nicely. Finding the time to stay on top of a website seems a little out of reach at the moment. I do love writing on my blog, even though many posts stay unpublished! <br />
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We just returned from the spending a week at the beach with family. It was a tough week. Emma has become very unsettled when away from home. We spent many nights in our vehicle listening to music because it was the only thing that calmed her. Brian and I love our time at the beach. We have always been so excited to share these times with our kids. It scares me to think that vacations won't happen as often because Emma is so unhappy. I don't want Angelman Syndrome to take that part of our life also. Emma woke screaming one night at about 2 a.m. I did not want to wake everyone in the house, so we snuck out to the truck. I was exhausted because I had decided to stay up a little later after I put the kids in bed. I was drained physically and emotinally. Everything outside was so dark and still. I felt so alone. I had a little pitty party after putting in a DVD for Emma. We did get to watch the sun come up over the ocean, so there is something! When I have a night like that, I like to do something challanging the next day. Feeling so hopeless the night before, I wanted to do something that just felt right. Something that would be typical yet still provide a challange. Something that would let me know that I could do this, that everything would be ok. I fed Emma a quick breakfast and we headed out, just her and I. We shopped, without putting Emma in the stoller. I made her push behind the stroller. I let her cruise the aisles, let her push the buggy though Marshalls. She seemed so typical. Mom and daughter shopping trip. We then went to luch by ourselves. I talked to her, she smiled back. It was a great day. I felt recharged and ready to take on the rest of the week.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-3078741820283749772012-06-17T12:58:00.000-07:002012-06-17T12:58:17.721-07:00Since the new title of the blog is Learning How to Bend... I thought an appropriate post would be about what I am learning along the way. <br />
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<b>Life isn't always what you think it should be. </b>Three years ago I thought that this year I would be signing our little girl up for her ballet class. I never would have imagined that we would be ordering her first wheelchair and walker. Three years ago, I imagined the questions she would ask me. The conversations we would have. I never imagined that we would be searching for the best communication app for her Ipad. <br />
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<b>Accepting what I can't change. </b>This is a tuff one for me. I still struggle with emotions when I see little girls Emma's age or younger doing so much! The differences are so apparent now. I remember the first time these feelings hit me. We were on the beach two summers ago and a little girl Emma's age was walking on the beach with her mom and grandmother. She came right up to us and had a conversation with me. It took everything I had not to run into the house and cry. Birthday parties, family gatherings, weddings, etc. are all just a little bit harder now. I can't help but to think, why Emma?<br />
I know that learning is a lifelong process. I also know that even though it gets easier, these moments are still going to sneak up on me. It will be how I learn to handle them.<br />
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<b>Learning who I can turn to on the darkest of days. </b> I think it may be easier for them to see us at our best. It is easier for them to go home and shut their door and forget about Angelman Syndrome for awhile. Maybe it is that I come across strong and that I don't need the help, the advice, the shoulder to cry on. I know that I can count on my husband. We make a pretty good team most of the time ( with the exception of the sleepless nights... he can sleep through anything). I have also formed some unbelievable friendships that I will have for the rest of my life with other special need moms. I know they are only a phone call away when I need them the most. <br />
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<b>Push past the worry and the fear. </b>Anyone that knows me well, knows that I worry about everything. Try adding a child with seizures who will need life long care to the mix. I don't know if I am learning to push past the fear or just learning to live with it. I think the top of my concerns is who will take care of Emma if something happens to us. It is a terrible feeling knowing that you don't know who will fight for your child. Who will care for her for the rest of her life. If I die, will she feel scared and alone? I can't constantly live this way. When the feelings creep up, I try to push past them, enjoying every moment that I have. <b> </b><br />
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<b>I am tougher than I thought. </b><br />
The shock and hurt of having a special needs child never really goes away. It is a hurt that I can't explain, the pain does get easier. I am so much more aware of the comments of others. I hear some pretty hurtful ones. I know that these people (some even friends/ family) would never mean to hurt me. They are just unaware. They aren't living this life.<br />
There are these moments that sneak up on you. They feel like a knife is ripping open those wounds that are starting to heal. What I am learning? These moments are quick. I am learning how to have a good cry, knowing that is okay, and then moving on.<br />
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I am learning all of these things from the greatest teacher I will ever meet. She is about 34 inches tall and weighs 30 pounds soaking wet. She teaches patience, kindess, love, virtue, bravery without saying a word. I have learned that defines incredible!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-409679906765512972011-11-24T07:58:00.000-08:002011-11-24T07:58:06.835-08:00And the journey continues...A pretty incredible event has happened since my last post. Emma became a big sister. Carter Tate was born on August 22 weighing 7 lbs. 8 oz. It is amazing how easy he just fits into our family. I feel like he has always been here. He is smiling and cooing. He looks at his big sister with amazement and that he should, Emma is pretty amazing. I can't wait to see them grow and play together.<br />
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Emma has been communicating with the help of an IPad. Just the most basic apps have open up this whole new world between the two of us. She is answering questions and communicating her needs for the first time in her life. We will soon start working with more complex applications in hopes of having continued success.<br />
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There has been some pretty exciting news on the research front. Clinical trials will be starting soon on an FDA approved drug that reversed some Angelman Syndrome symptoms in mice. We found out this week that another scientist has found a compound that will turn on the maternal UBE3 gene that is silenced in Emma's brain. This would be a potential cure for Angleman Syndrome.<br />
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Several AS parents were having a discussion recently about their opinion of a cure and clinical trials. I was pretty surprised to find such a difference in opinions. Since Emma's diagnosis, I have dreamed of a cure. This summer, my dreams and what if's became more realistic. For the first time ever, I had reason to believe that it was possible. I guess I didn't realize that others looked at things differently. These parents, regardless of opinions, are warriors in their own right. They are all fighting a battle. Some are choosing to fight for a life of acceptance for their child despite having Angelman Syndrome. They are facing the future head on knowing the challenges that they will face. Others, are choosing to fight for a cure or treatment for their child. They are letting faith and hope lead the way. One thing that they all share, they want the absolute best for their child.<br />
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I don't know what a cure will look like for Emma. I know that there are risk. Putting a child on a new drug is a scary thing. There is also the chance that my dreams of a cure won't be all that I imagine them to be. What will it be like if these meds don't work. These are all risk I am willing to take. Today, I have hope.<br />
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<div style="text-align: center;">Hope </div><div style="text-align: center;"><br />
</div><div style="text-align: center;"> by Emily Dickenson</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Hope is the thing with feathers <br />
That perches in the soul, <br />
And sings the tune--without the words, <br />
And never stops at all,</div><div style="text-align: center;"><br />
</div><div> </div><div style="text-align: center;">And sweetest in the gale is heard; <br />
And sore must be the storm <br />
That could abash the little bird <br />
That kept so many warm.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"> I've heard it in the chillest land, <br />
And on the strangest sea; <br />
Yet, never, in extremity, <br />
It asked a crumb of me.</div><div style="text-align: center;"><br />
</div>Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-90748750592925370872011-03-05T12:18:00.000-08:002011-07-11T05:48:51.412-07:00But for the Grace of GodI have often wondered when the stares from strangers would go from looks of envy to looks of pity. I think we might be crossing over. I have seen the faces of friends, familiy, and strangers when they see Emma struggle to move. When they see us to all the work in getting her into a stroller, highcair, carseat. I see the look on their faces when I talk to them about AS. I call these the "but for the grace of God" looks. I can almost see some of them thinking, but for the grade of God, my child is healthy. But for the grace of God, my child does not have seizures, can walk,. can talk. I could agree with them. I could come up with an entire list of why they are the lucky ones. What good will that do me or Emma? I can also think of a million reasons of why I can say the same thing. Here are just a few... <br />
But for the grace of God I have a child who has a smile that can light up a room. <br />
But for the grace of God I have a child who knows how to work harder and is tougher than any adult I have ever met. <br />
But for the grace of God, I have a child who has taught me patience. <br />
But for the grace of God, I have a child who finds pleasure in some of the simplest things. Emma loves life. She sees good in everything around her. <br />
But for the grace of God, I have a child who has taught me a new meaning of the word intelligent. There is so much going on in the head of hers. Who cares if it is not the norm of how we define intellegent. She is the smartest two year old I know. <br />
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We don't want pity. Emma's life is nothing to feel sorry for. She is going to have a great one. Of course she will have to overcome obstacles that I wish I could take away. It won't be easy and we will shed our share of tears. I have every bit of faith that she will make her stamp on this world. She already has.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com1tag:blogger.com,1999:blog-3515811644380123172.post-25236682119351766802010-11-26T04:53:00.000-08:002010-11-26T04:53:30.299-08:00 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. <br />
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.<br />
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.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-91050009629181810382010-11-05T17:45:00.000-07:002010-11-05T17:45:02.353-07:00A 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. <br />
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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. <br />
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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! <br />
We are going to take a little fundraising break before we start planning for our golf tournament in the spring. <br />
<br />
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.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com2tag:blogger.com,1999:blog-3515811644380123172.post-36289365165908918972010-07-20T11:56:00.000-07:002010-07-20T11:56:22.049-07:00New Friends<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLKDkgAnZxBz9AeNftQfM5LhZcG2D7UIkMjgCTxB9Wa1dyXKrr13DlGpnkeq9wK0XDl7raXuuezjAJjHI2WTP3ggsTlmQUaCbauANlrqFKQCpvkpEKIom4q47-LnTuGNVufPkOBNXZcHSN/s1600/P1030163.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLKDkgAnZxBz9AeNftQfM5LhZcG2D7UIkMjgCTxB9Wa1dyXKrr13DlGpnkeq9wK0XDl7raXuuezjAJjHI2WTP3ggsTlmQUaCbauANlrqFKQCpvkpEKIom4q47-LnTuGNVufPkOBNXZcHSN/s320/P1030163.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg67cp3CnCg0pqhZJv8smDyiLPCggz3uw_uLKfII6oAavVgyiyMIBg8nnuOnpa3SFHtTEnmZp7qjKeudG4c5eErvLyw-IJ3G4-L39TSFHgoGnrqZPwFOontfBIBgH_ZlCwLey6m-oBbLM83/s1600/P1030181.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg67cp3CnCg0pqhZJv8smDyiLPCggz3uw_uLKfII6oAavVgyiyMIBg8nnuOnpa3SFHtTEnmZp7qjKeudG4c5eErvLyw-IJ3G4-L39TSFHgoGnrqZPwFOontfBIBgH_ZlCwLey6m-oBbLM83/s320/P1030181.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij8jaIHvrpwqZgD80A-_ESdz3FKJkZSBWo8J80OpJUnivPLkYGzZyu9JiW5LGpeMpxWWlrrrZ3T3DybMLg2CwN8S9mTl7y1Lcs3n55alAU-GMis4arlHwWGo6shLMvdMgeQ-YaRS7pkikC/s1600/P1030187.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij8jaIHvrpwqZgD80A-_ESdz3FKJkZSBWo8J80OpJUnivPLkYGzZyu9JiW5LGpeMpxWWlrrrZ3T3DybMLg2CwN8S9mTl7y1Lcs3n55alAU-GMis4arlHwWGo6shLMvdMgeQ-YaRS7pkikC/s320/P1030187.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigjDTLG1iTDfyOG5JGldYkkXy111pJ8NdYyIH8HtGaLTCZd22U0Zgt5fgh80cqHhYzBiO4iE2Pin0S2oFzLoNyp5n9AAbVQ_8eWeh64xhodHj1VDtb130OF5TqNbIXykO568acaOJse30G/s1600/P1030213.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigjDTLG1iTDfyOG5JGldYkkXy111pJ8NdYyIH8HtGaLTCZd22U0Zgt5fgh80cqHhYzBiO4iE2Pin0S2oFzLoNyp5n9AAbVQ_8eWeh64xhodHj1VDtb130OF5TqNbIXykO568acaOJse30G/s320/P1030213.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUOvo-vo35S3DnXtOeyamAs34rSB1bQe01GeOYPICMvlc2Qt1bnYamqeL72-8TP2PftK3sn490nYzbUb2fJsapo9ls1GmE_gdR6wglM1LIKwq7yOApJR4slIMkQJDggYEk3M2ojNhtyusr/s1600/P1030188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUOvo-vo35S3DnXtOeyamAs34rSB1bQe01GeOYPICMvlc2Qt1bnYamqeL72-8TP2PftK3sn490nYzbUb2fJsapo9ls1GmE_gdR6wglM1LIKwq7yOApJR4slIMkQJDggYEk3M2ojNhtyusr/s320/P1030188.JPG" /></a></div>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! <br />
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.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-2399899640431161232010-07-20T11:44:00.000-07:002010-07-20T11:44:04.054-07:00New Friends<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvZfByxIc_rSOtjLEzs_p9Otrr363Al7X2CUHJ_42wSf4Ps2eHTKyVqFEhzdPJ5fSK35D8CpiIqjBKkhetFRU5qyklVYVOONl6l2diDhLCkoUdAAjosTnsJK2u1tgS14UvNlkIYK9vjj2q/s1600/P1030224.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvZfByxIc_rSOtjLEzs_p9Otrr363Al7X2CUHJ_42wSf4Ps2eHTKyVqFEhzdPJ5fSK35D8CpiIqjBKkhetFRU5qyklVYVOONl6l2diDhLCkoUdAAjosTnsJK2u1tgS14UvNlkIYK9vjj2q/s320/P1030224.JPG" /></a></div>Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-1030201080119039432010-07-04T07:45:00.000-07:002010-07-04T07:45:28.870-07:00New FriendsEmma'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....<br />
<br />
<br />
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." <br />
<br />
<br />
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.<br />
<br />
<br />
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.<br />
<br />
<br />
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. <br />
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.<br />
<br />
<br />
<br />
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.<br />
<br />
<br />
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.<br />
<br />
<br />
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. <br />
<br />
<br />
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.<br />
<br />
<br />
<br />
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.<br />
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. <br />
<br />
<br />
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. <br />
<br />
<br />
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.<br />
<br />
-by Maureen K. HigginsJessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com1tag:blogger.com,1999:blog-3515811644380123172.post-88172117316140192092010-06-01T14:47:00.001-07:002010-06-01T14:47:34.902-07:00God 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 ...you to my seasoned and weathered friends especially those who vist me in Holland now and then!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com1tag:blogger.com,1999:blog-3515811644380123172.post-66311775244792270342010-05-09T14:47:00.000-07:002010-05-09T14:47:03.044-07:00Mothers Day as a Special Needs MamaOn 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. <br />
<br />
A little update on her progress...<br />
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! <br />
<br />
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! <br />
<br />
<br />
You weren't like other children,<br />
And God was well aware,<br />
You'd need a caring family,<br />
With love enough to share.<br />
And so He sent you to us,<br />
And much to our surprise,<br />
You haven't been a challenge,<br />
But a blessing in disguise.<br />
Your ...winning smiles and laughter,<br />
The pleasures you impart,<br />
Far outweigh your special needs,<br />
And melt the coldest heart.<br />
We're proud that we've been chosen,<br />
To help you learn and grow,<br />
The job that you have brought us,<br />
Is more than you can know.<br />
A precious gift from Heaven,<br />
A treasure from above,<br />
A child who's taught us many things,<br />
But most of all- "Real Love"Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com2tag:blogger.com,1999:blog-3515811644380123172.post-38091427832420173902010-03-21T07:16:00.000-07:002010-03-21T07:16:28.966-07:00One more mountain to climbWhen 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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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". <br />
<br />
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! <br />
<br />
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.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com3tag:blogger.com,1999:blog-3515811644380123172.post-66087455643888282162010-02-28T04:49:00.000-08:002010-02-28T04:49:53.997-08:00I 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. <br />
I have been hearing this song lately and the tears start everytime.....<br />
<br />
"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". <br />
<br />
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!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-47022300086444504382010-02-08T13:02:00.000-08:002010-02-08T13:02:08.529-08:00Great 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.Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com2tag:blogger.com,1999:blog-3515811644380123172.post-43314183343828023162010-02-02T07:14:00.000-08:002010-02-02T07:17:16.962-08:00Read this poem today.....Hi! This poem was on a friend's blog and thought that I would share....<br />
<br />
Welcome to Holland<br />
<br />
<br />
"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.....<br />
<br />
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. <br />
<br />
The Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.<br />
<br />
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!"<br />
<br />
"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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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".<br />
<br />
And the loss of that will never, ever go away, because the loss of that dream is a significant loss.<br />
<br />
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."<br />
<br />
<br />
<br />
……Emily Pearl Kingsley (founder of the USA Down Syndrome Association) <br />
<br />
(Reproduced from AFASIC News No. 78 May 1995)<br />
<br />
<br />
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!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com0tag:blogger.com,1999:blog-3515811644380123172.post-31181417348584961772010-01-24T15:07:00.000-08:002010-01-24T15:08:52.480-08:00New DietOk... 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) <br />
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!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com1tag:blogger.com,1999:blog-3515811644380123172.post-46914414473549716762010-01-18T06:06:00.000-08:002010-01-18T06:06:22.440-08:00The 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! <br />
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! <br />
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. <br />
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! <br />
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!Jessiehttp://www.blogger.com/profile/07458237397733850059noreply@blogger.com2