Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Friday, December 31, 2010

Welcome 2011

I am anxiously awaiting all that 2011 holds for us.  As for resolutions I think I'm going about it a little differently this year, I'm going to try goals instead.  For me I think they will be easier to obtain - sort of baby steps that I can take throughout the year to better myself rather than having 1 stellar week in early January and then being angry with my self for failing.  My goals are going to have a common theme and that is "Thankfullness"!

There is a local radio personality here that has spoken a few times about how his family went through a time when they were in severe poverty.  They had a roof over their heads but there were nights when all they had to feed their kids was plain dry toast and water.  Throughout this hardship he recalls that he and his wife were determined to not let it take their spirit.  They stayed positive and hopeful and above all else they always stayed thankful for the things that they did have.  Years later, when the hardship was over, they were in a better place and their kids were grown he asked his children what they remember about that time of poverty.  Their answer surprised him.  They didn't remember being broke and going without, what they remembered was that they spent every night together as a family,  and that their mom made really great toast!

When Rett Syndrome entered our lives 4 1/2 years ago so many dreams were shattered, so many hopes for Annie and our entire family were crushed.  Since then we have made new goals and have discovered exactly what matters in life.  Rett Syndrome has stolen a lot from us, especially from Annie but even with all that has been lost we have always had so much to be thankful for.  I want my kids to realize that as they grow and live not everything will be perfect, things go wrong, hopes and dreams die but new ones take their place.  Above all I want them to know that one of the most important things in life is to be thankful.  If their hearts are thankful happiness is sure to follow.  I pray when my kids are adults and look back on their life growing up that they don't remember rett syndrome and sickness but rather the "toast".  Here's to a wonderful New Year, one full of blessings and miracles, signs and wonders and a new chance to discover all that we have to be thankful for.


Saturday, December 25, 2010

Christmas 2010 - A Success


As rough as December was on Annie (and me) I have to say that this was one of the best Christmas's EVER! I'm not sure why, maybe it's because the couple days of leading up to Christmas Annie started feeling better and we saw some easier days or maybe it's because we have been dealing with rett for so long that we are starting to (dare I say the words) get used to it?? Who knows, but at any rate we had a great time!
Annie's GI pain eased up a little bit over the Christmas weekend but she was still off and on at my moms big Christmas Eve party. What's weird is that it didn't really upset me too much. I think it's because I just let go and decided that instead of holding her and trying every trick in the book to make her happy only to fail and get us both frustrated I just passed her on to Scott, who passed her on to my sister, who passed her on to her husband. I got a chance to chat with the rest of the family and I think Annie was much happier being around everyone rather than just staring at my stressed face.
Chirstmas morning Annie was the first one up but quickly fell back to sleep after snuggling with mom and dad. Gracie was next and shockingly James was last. We headed downstairs at which time Annie became irritated. Instead of forcing the issue and making her do hand over hand to open her gifts we just wrapped her in a down comforter and let her relax. When she was ready we had her look inside her gift bags. We used 2 huge gift bags and put all of her gifts in there together so she didn't have to deal with wrapping paper and using her frustrating hands. We had breakfast and then took her down into the play room to see her big gift. We set up a canopy with Christmas lights (she loves lights), a flying angel and big comfy pillow - "Annie's special place". She layed on her pillow to look up at the lights and fell right to sleep - she loved it!


Christmas Day we headed over to my in-law's house. Annie was not overly thrilled but seemed comfortable for the most part. (I LOVE this picture of her beautiful face. I really need to get some solid color arm braces though, sometimes they can be a bit "busy" - red would have been nice against the black dress - oh well, maybe we won't need them at all next year!).


Christmas 2010 was a success. Leading up to it, not so much, but we were blessed to be around lots of family. There are so many things that we have to be thankful for and sometimes I loose sight of that when the stress gets to be too much. I'm not sure if the New Year will bring less stress but I am hoping that I can use this December as a way of learning to cope with it better.
This post was mostly about Annie but we have 2 other kiddos here that thoroughly enjoyed Christmas! Here they are jumping up and down on Christmas morning!
Gracie eating a "Happy Birthday Jesus" cupcake
Grammy got Gracie a puzzle, she loved it so much she put it together and then hugged it! Silly girl!
James didn't even sit down to open his gifts!

Sunday, December 19, 2010

An Annie Update

So it's no surprise to our regular blog readers that Annie is battling GI issues. For those who aren't familiar with our sweet Annie's battle I will give you a little background - without rewriting the whole story! Annie was born perfectly healthy and normal, she was such a quiet and tiny little girl that we literally had to set an alarm to wake up and feed her at night. She wasn't a big eater but would eat when she was hungry and tolerated her feeds well. At 9 months it was as if someone flipped a switch and Annie started screaming louder than we had ever heard before, she started refusing feeds and got to the point we wondered if she would dehydrate because she was taking in such little food (this we now know was rett syndrome taking over her little body). Since this time we have struggled with feeding Annie, keeping her weight up, keeping her digestion and absorption in check, reducing her reflux and battling gut pain. We've tried different diets, been through countless medications and tests. In April of 2008 Annie went in for surgery for her g-tube to help with her weight and to possibly allow for a way to relieve gas pressure from her stomach. This has been a blessing but not a "cure all". Annie continues to struggle with constant gut pain and lately that pain has increased. For the past 2 1/2 weeks Annie has been spending most all of her days moaning in pain. The pain increases when she eats (or when bolused) and she screams in pain for upwards of 2 hours 10 minutes after eating. We typically see this behavior for about 1 week every 4 to 6 weeks - the screaming lasts for about 4 to 8 hours a day every day for a week. There's no reason for it and then it subsides as mysteriously as it came one. We have never been able to figure out the actual source of the pain. The pain went on for over a week and got so bad that it was keeping her from doing her therapies and even tolerating being on her computer.
In the past we have had docs throw up their hands and say they were sorry but didn't know what the problem was or how to solve it. We've had others docs who have questioned if it was GI pain, still others who have said, maybe its neurological and she's not really in pain (ummm, no.). We remembered that our local GI had suggested a certain med and praying for a little relief for our sweet little girl we called to ask for it. Instead of prescribing it he ordered a new test. This one was suggested by the GI we saw in NY it was a gastric emptying test. Of course we took action. Honestly, not that we want our child to go through more testing, but it was a glimmer of hope that we might gain more insight into Annie's pain and actually find some treatment. We got the results today, the GI said I have good news and bad news, the good news is that Annie's test was perfectly normal, but that's also the bad news because I am out of ideas and don't know how to help your daughter. I really have great respect for this doctor. He listens to our concerns and really seems to love our little Annie (its hard not to love her). For him to say that he has tried everything, I believe him. I asked him about the neurontin and he said it's worth a shot but that a neurologist would be better equipped to follow her on the med. So now we are on a mission to get ahold of our neuro and get Annie started on this med in the hopes that it may allow her some relief and increase her quality of life.

I FOUND IT!

My Christmas spirit. That joy of the Holidays, being around family and friends, I found it! Over the past month I have been through a rush of emotions. Starting Dec. I was thrilled that it was getting close to Christmas! I was hopeful. That feeling quickly turned to sadness, then anger, then bitterness. I know a lot of special families have the same emotions, maybe not all in just a couple of weeks like my crazy head but we all experience emotions and I really think we are entitled to them (except the bitterness, I hate that emotion, I don't think it's human and I hate to admit that I feel it at times!). If you have been around me lately its really not anything you could have missed. I have to admit I'm the person who wears my heart on my sleave. Can't keep anything hidden no matter how hard I try, if I'm angry it comes out, if I'm sad the tears run, and I know that my broken heart was shown all over my face for the past few weeks, I haven't been the easiest person to live with. I'm typically a strong person, one who can endure quite a bit. I'm a realist, I look at the big picture, figure things out and press on. That wasn't me this past month. I caved, I gave in, I allowed the enemy to win. The sadness and reality of rett syndrome got the better of me. Knowing that sweet little angels were finding their way home, and fighting for their life at even younger ages then my Annie was just too much to bear. I found myself looking at people and thinking "what could you possibly be sad about?" (I know, bitter right?). I have to say that the Lord showed me quite a few times that I was not the only one suffering. People who I had know reveiled to me burdons that they were carrying that I didn't know about and I have met others who have had more on their shoulders then most can even dream about. It reminds me of something I read: - the quickest way to forget your troubles is to help other people with theirs - . Through this state of bitterness I held on to that thought and I have tried to pick myself up with it and you know what, it worked!

This week I have found my entire outlook changing. I'm excited for Christmas! And its not because we are in a good place "rett wise" (Annie is actually having a very difficult time right now and same as in previous years she will not be able to tell us what she wants for Christmas, open her gifts on her own or smother us with hugs and kisses after opening her favorite gift). Some how that doesn't matter, some how there is actually something bigger, something that is carrying us through and lifting our spirits. I think it's the fact that we are focusing on things that are more important than us, not dwelling on our problems but instead looking at ways we can help others. That's it, that's the spirt of Christmas! Now if I can only remember that for next year and skip the whole "bitterness bit".
In that spirit of Christmas here is some video I took of James and Gracie at their school Christmas celebrations (Annie unfortunately didn't have a school Christmas party) because there is no way that you can hide a smile while children are singing Christmas carols!
video


video

Saturday, December 11, 2010

Stepping it Up

in leu of the last post and Annie's very fragile bones we have stepped up our weight bearing exercises - I'm optimistic and willing to try everything but honestly Annie is very active and on her feet quite a bit during the day (health permitting) so I don't think it's the weight bearing that is lacking, but it's worth a try! So, in addition to Annie's normal daily routine of stretching and strengthening we have added an additional 1/2 hour of pure static standing each day. We tossed around the idea of getting a stander but Annie can stand unassisted and I don't want to take that away from her. She stands very well, we are working on posture and alignment and I think you can tell from the video that she is getting straighter. She struggles with balance but can usually correct herself and stand the full 30 minutes without so much as a break. I do have to be within arms reach because if she were to fall she has absolutely no protective reflex so she would timber and land flat on her face - ouch!
If this video doesn't play click here. Sidebar: (notice in the video only 1 arm brace and the unbraced arm does NOT go into her mouth, not even once in the full 45 second video!!! YES! For 2 days now we have been able to go completely unbraced for a couple hours with only a few "out please's!)

Sometimes we have Annie stand with one foot forward we make her hold that position and then we have her stand with the other foot forward (almost as though she is walking with a long pause at each step) to work on the muscles it takes to walk.

Some of the other things we work on are standing on 1 foot - it's modified of course - we use a round, squishy disk - Annie bends her knee and puts one foot on that and weight bears on the opposite foot - she can put some weight on the disk but since its squishy its unstable so she would topple if too much weight was on it.
If this video doesn't play click here
This exercise has been great for strengthening her hips which of course we need for the weight shifting part of walking. We have also been working tirelessly on sit to stand and stand to sit. We have a homemade bolster (rolled up remnant carpet with the carpet side out) she sits on that (which of course is unstable so just sitting causes her ab muscles to fire) and we go up and down and up and down - usually 3 sets of 10 or 15. We work on strengthening her glutes by putting her tummy down on an exercise ball and assisting her with lifting her leg up off the ball. We make her "walk" up stares at least a few times a day which is easy in a colonial when the play room is in the basement! And of course walking, Annie usually laps the house between 15 and 30 times a day (makes me a bit dizzy), in the summer she's able to make it all the way down the block and back and once all the way to the PARK! If there was one way to describe this child it would be motivated! Which is such a blessing!! For the most part Annie is only limited in what I am able to provide. We lost our respite care at the end of summer and I have yet to find anyone, even interview anyone to help out. Annie's not in school much, only about 12 hours a week and school provides very, very little PT and her goals in school remain extreamly inappropriate, Annie is far beyond accomplishing them. She is in in private therapy for 1 hour 40 minutes a week (split between 50 minutes of PT and 50 minutes of OT with the most wonderful therapists on earth!). Of which I am there with her to learn more ideas about what else we can be doing at home. It's difficult trying to single handedly be someone elses hands, feet and voice 24 hours a day when you are also called to be a mother to 2 other little ones and oh yah, a wife too (poor Scott doesn't get much attention these days, thankfully he understands the struggles) - this post was NOT intended to be a pitty party by the way.

I have hope for a cure, so much hope, really, I could honestly say that I would bet my life on a cure, the problem is when? I wish I had a magic ball just so I could know the date. I just want to see that light at the end of the tunnel. I could push through, I really could even if it was longer than expected I could make it if I could just put a timeline a figure on how far out we are. Unfortunately that's just not the way the world works (even though it should :). So I will wake each morning, down the coffee, and continue to put on pot after pot and grab my little girl and continue to work with her all day, every day to bring out what I know she holds inside.
After all, neurons that fire together wire together (to quote the GREAT Dr. Djukic) and if she doesn't use it then she looses it and looking at this beautiful, strong, sweet girl all I see is potential and Love in it's purest form (next to Jesus that is). Loosing it is just NOT an option!

I can do ALL things through Christ who strengthens me! Philippians 4:13

Friday, December 3, 2010

Score 1 for Annie! Wait.... not so fast......

Dealing with rett syndrome is the equivalent of constantly being on a roller coaster - I HATE roller coasters! I like things to be planned to the last detail, I like to know exactly what I'm in for. With Rett Syndrome there's just no idea what will happen next. Each morning I wake up to Annie's irregular breathing in the monitor and I wonder what's in store today? Is she going to be able to make it to school? If so am I going to get called to pick her up? If I do how am I going to pick her up when I have to get Gracie from her school? If she makes it through school is she going to have a melt down after school? It's a minute by minute guessing game. Annie could have the best morning and then have an afternoon full of screaming fits for reasons that I can't figure out. Or she could have the worst morning full of hours of moaning in pain (again, no idea where the pain is coming from), breath holding and tremmoring and then have an evening full of giggles and smiles. One day she seems so strong that she could actually, possibly take steps on her own, the next day she's so weak her legs are like jello and she can bearly hold any weight. It's a guessing game except there's no reason to guess because even if you're right just wait a few minutes and everything will change. I want to get off this ride but its useless, there's no stop button, not even a pause to catch my thoughts and regroup, its constant 24 hours a day and I DO mean 24 hours. The evening is full of questions as well, is she going to fall asleep before 11pm? If she does is she going to wake up at midnight? If she does what do we do? Give her an extra dose of meds or see if she can fall asleep on her own? What if she doesn't fall back to sleep? Should we turn off her tube feeding? Then she won't eat the next day and her weight is so fragile as it is but if we keep it on will it keep her up? What if she falls asleep in the morning at 4am or after do we send her to school? and so on and so on, the endless list of questions without answers and the constant wondering if I'm doing this whole thing right? Where's the book with all the answers? Why can't this be just a little bit more predictable? With every question and every outcome I become more and more unsure of myself, because of course with every decision there is room for doubt and there are always consequences.

One such example is constant in our lives, the issue with Annie's sleep (or lack there of) and her weight (which despite the tube feeding is still a shockingly low 29 pounds). When Annie wakes up in the middle of the night we typically turn off the tube feeding, somehow it seems to help but only sometimes and we're not sure why. It's one of those things on the list that you try just to attempt to get a few more precious moments of sleep. Soooo, if turning off the feeds helps then keep doing it right? Nope, now we need to play "catch up" to regain the calories we lost in the feed - to compound that issue if Annie doesn't eat at night, for whatever reason, she's not hungry the next day - pretty tough to make up those calories when the girls not hungry. Bolus her durring the day? Good thought but a bolus sends Annie screaming for hours - not sure why, no one can figure that out. What about keep the tube feeding going even if it means lack of sleep? Think about having a new born baby awake a few times a night to eat for the first couple months of life. How tired a new mom is the rest of the day - take that and multiply it times 5 years - that's how long Annie's had sleep trouble - we're TIRED! The whole situation is a catch 22.


So today in the mail we got Annie's scoliosis report. We were thrilled earlier this week when we heard that her scoliosis is now at an undetectible curve!!! YES!! Score one for Annie! Take THAT Rett Syndrome!! We were at an 8 degree curve 2 years ago, then down to a 6 last year and now undetectible!! Awesome right?? Well, we thought so, until we got the rest of the story. Annie's bones are continuing to thin. You know the osteopenia you see in older women? When they fall and break their hip? Well, my 5 year old has that. The report says "diffuse osteopenia consistent with a chronic debilitated state" Rett Syndrome just tipped the scales again. And here comes the guilt - do I get her up enough? Is she getting enough therapy? Are they making her stand and walk at school? How do I stop her bones from thinning if she's been on bone suplements for 4 years now? The conclusion is that there is just no winning the battle. Oh, don't get me wrong, I will continue to do everything humanly possible for my Annie, I will give everything in me until I take my last breath. But, there's just no sense in fighting because it's not my battle and if it's not my battle how can I ever win? This is God's battle, and all I can do is make my requests. God's in control of the situation, in control of all that goes on inside Annie's body and my job is not to fight but to listen. Listen closely to that still small voice that says "She's mine, I've got her". Its so easy to get caught up in all of the chaos, all of the questions and the constant worry and quilt. Today I just need to remind myself to sit down, calm down, and listen. God will direct our next step, He always does, without fail, as long as we let Him.
.....‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. 2 Chronicals 20:15

Monday, November 22, 2010

National Day of Prayer for Rett Syndrome!

The National Day of Prayer for RETT is a facebook event that invites you to pray where you are, anywhere, anytime on Dec. 9!

Do you believe in the Power of Prayer? If so join us as we come together praying for our girls, our families, our researchers, and believing for our CURE. Join us as we storm the heavens for the sake of our children and watch God move in 2011!

"Again, truly I tell you that if two of you on earth agree about anything they ask for, it w
ill be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18:19-20

On Thursday, Dec. 9 we are asking for everyone that believes in prayer to pray for Rett Syndrome. There is power in prayer and there is power in numbers. We believe that if we all come together and believe that we will see God move on behalf our children. What better time than just before the new year when our research to our treatment and cure is so close. We want this message to reach across the world, just think how powerful it will be to have hundreds or thousands of people on their knees for Rett Syndrome. Pass this invitation on to all Rett parents, family and friends, churches and prayer groups, anyone who believes and will truly pray on this behalf. Are you a believing person but not sure how to pray? We will have a prayer for you that you can use to pray on Dec. 9. Want to spend extra time in prayer? We will have scripture verses that you can meditate on. Do you have a child who is particularly sick and suffering? Give us her name, we will have a list and will pray for these girls specifically.

“Yet, LORD my God, give attention to your servant’s prayer and his plea for mercy. Hear the cry and the prayer that your servant is praying in your presence.” 2 Chronicles 6:19

This event has grown to almost 600 strong! Imagine 600 people on their knees for Rett Syndrome all in the same day! God is working on this event and I pray that everyone who reads this will join us. Check out our facebook event page HERE and commit to pray with us.

Thankfulness

It's no surprise that the Holidays can sometimes bring a bit of sadness for some people and I think I speak for all parents of Rett kiddos when I say that this time of year is definitely bitter-sweet. I'm pretty sure that's why God has chosen this time to cheer us right up and give us something to hang on to during this time. That something is RETT research breakthroughs!!!!

The first got us closer to understanding MECP2 (the gene that when skewed causes Rett Syndrome) and it's role in GABA cells: Read the article and see video HERE. Dr Huda Zohgbi's lab was responsible for this finding, watch a short video of her thoughts HERE.

Next, Alysson Muotri of UCSD published an interesting paper in the journal Cell. Click HERE to see how he has made cell lines from skin biopsies of kids with Rett. The cell lines can now be used as a platform to screen for drugs. And an interview with Dr. Muotri can be found HERE

Amazing research that just brings us closer and closer to our cure. A huge thank you to my friends and family who continue to support our efforts to fund the research that will one day cure our Annie. We are in a good place, Annie continues to stay strong, she's still very young, she's learning more and more every day and our hope for a cure continues. I can't wait for the day when we get that phone call - I can just imagine our doctor calling with the news of a treatment and we will start the healing process, the process of getting our sweet Annie back and the joy of watching her go through her milestones for a second time. We wait and hope and pray.

Sunday, November 7, 2010

Annie's New Language!

Annie has had her ECO 2 eye gaze computer now for about a month. She is doing amazingly well with it. She is still learning all of the symbols and what they mean and how to navigate through the pages to say what she wants to say. But everyday we get some really good, really appropriate conversation from her. I have to say that this computer has been life changing and it has the potential to bring Annie so much freedom, so much expression, so much personality and so much hope! We are not taking a second of it for granted!

Here is a video of Gracie, Annie and I talking about Annie's day at school (sidebar - Gracie's tiny voice is soooo adorable, she say's "wild turkey's" like 3 times and I've never heard those words sound cuter - I know, I'm her mom, but seriously..... OK enough). This is something we do every day. I take a look at the note that Annie's teacher wrote home about Annie's day at school and then I ask her questions so I know her talk isn't random.


If this video is not working please go here

The other day I was feeding Annie lunch and she wasn't eating (of course). She was in front of her computer but not saying to much when she started throwing a huge fit. I knelt down next to her and asked her what was wrong. She continued to scream and looked down at the floor rather than her computer. I know that it's not the popular opinion to "force" girls with rett syndrome to communicate, or to really "force" them to do anything - they have severe apraxia of their entire body and typically want to do things but literally can't get their brains to give those signals to their body to perform an action. I do get that but I also don't feel like I'm doing Annie any favors by caving in to every tantrum that she throws and I am very confident in her ability to communicate. Soooo, I told her that she had a way to communicate and if she wanted me to help her she would have to tell me what's wrong - she pulled my hair (for a kid without any hand function she's able to pull hair really well!). I walked away and let her continue screaming. After a few minutes her screams calmed a bit and I went back up to her and asked her again what was wrong, I was showing her the symbol for "I have to go to the bathroom" the symbol for "hurt", the symbol for "I have to lie down" all the things and are typically at the top of my list when Annie throws a fit. She started screaming harder than ever and rocking so hard I had to put my hand on her back to keep her from hurting her back against the chair. I managed to scream over her that I could not help her until she told me what was wrong no matter how long she screamed. She stopped, looked at me, then looked at her computer, navigated her way to "I'm finished" and then stared right into my eyes as if looks could kill. I turned off the computer, grabbed her, hugged her, smothered her with kisses and told her that she was the smartest little girl on earth! She had told me that she was finished communicating - (which can be VERY exhausting). And that communication was validated as her, Gracie and I started playing a game and Annie's fit completely subsided. YES!! The rest of the day was rough, Annie threw 2 or 3 (or 15 - who can keep count) more fits that day that I couldn't figure out, but we figured out THAT one and that is a huge deal!! I'm hopeful for a day when I have a quiet house (and still have kids in it :) A day when Annie is so good at her computer that we only see the fits that are "typical" for kids her age not the minute by minute uncertainty and the feeling that she could just loose it at any minute. It's not that I blame her, I always tell her that if I were her I'd be screaming too but for her to have some peace, some say in her life, is the most wonderful blessing!

Wednesday, November 3, 2010

A different kind of Pain

I remember when Annie was first diagnosed with Rett Syndrome. I remember the way I cried. I had cried lots of times before then, for things like bad grades, being "unfairly" grounded by my parents, arguments with friends, break-ups with boy friends, the loss of my grandparents, lots of crying in my, then, 28 years. But when Annie was diagnosed I remember sobbing, uncontrolably, a whole body shake. I had never been more terrified in my life. I had never been more heartbroken. The pain of your child hurts worse than anything else in the world. I remember those tears continued to fall for 11 whole months, every single day (except the day Gracie was born, I remember THAT day I was crying happy tears of joy), the terror, the shaking, the tears, and then 1 day it all stopped. I'm not sure what it was, I was still heart broken but there came a point when I just couldn't cry anymore. Oh, don't get me wrong, I still cry, lots of times, just not every day. What's interesting to me is that when I cry about Annie it's still that same, take your breath away, inability to stop, drop to your knees kind of cry. A saddness that has cut so deep that it won't ever go away. It seems to come up whenever something changes in Annie's life, I go back to that moment of diagnosis and think how long it's been, how much longer will it be before she comes back to me and dear God why in the world are you allowing this? One day that question will be answered and I believe 1 day there will be so much joy, a joy that we've never felt before, a joy so great that we will completely forget about all the tears, a joy that will completely fill up that cut that was once so deep. A joy that will never go away. I'm dreaming of that day, and each moment that passes we get closer and closer. "For I will restore health to you and heal you of your wounds, said the Lord". God always keeps his promises, I just wish he would fulfill that promise right now.

Tuesday, November 2, 2010

James Challenge Update!

James made a pledge to earn $100 durring the month of October for Rett Syndrome Research. Gracie ended up helping him with the challenge and together they worked their tails off doing chores. They met their goal and exceeded it raising $133.46 for their sister and all the girls with Rett Syndrome! Read the full story here

This mommy couldn't be any more blessed!

Sunday, October 31, 2010

Ten things Not to Say

I encourage everyone visiting this blog to head on over to Life at Manchester Estate. Ten Things not to say is an amazing blog post by an amazing special mommy! Thanks Andrea for putting into words what all of us special needs parents want everyone to know!

Monday, October 25, 2010

Quest for a Cure total!!!


Quest for a Cure was an amazing success!!! About 400 people walked, $40,000 was raised for research, the weather cooperated and everyone had a great time!
Annie's A-team did great, raising over $4,000 and having 38 walkers!!! Here are a few

Thank you to all who donated and walked:
John Aurelia
Carole Holcombe
Terry & Shawn Lilly
Katie & Craig Jaenicke
April Fullmer
Bobbi Carroll
Mark & Cindy Emmelkamp
Jessica Jones
Chris Nosis
June McIntyre
Katherine Wybo
The Vavrick family
Katie O'Neill
Judy MacDonald
John and Pat O'Neill
The O'Neill family
William & Sharon O'Neill
The Barrett Family
Maureen Schlum
Mary McClorey
Janice and David Smith
Shelly Herzog
Shannon Curcuru
The Wittkopp family
Pastor Doug Schmidt
Twyla Tripp
The VanDenBrouck family
Claudia and Patrick Cassidy
Helen Paletko
Jeremy and Jennifer Brown

Next year as our 2nd annual Quest for a Cure continues we hope to have many more corporate sponsors - if your business is interested please let me know and I will make sure to have you on our list!
Mark your calendars for October 2011 when we will walk again, maybe next year Annie will be walking with us!

Friday, October 15, 2010

It could always be worse.

So lately with the kiddos going back to school, Annie getting a whole new team, training said team, Gracie starting a new school and having some ( OK tons!) of separation issues, trying to get involved with a new PTA, trying to volunteer in all 3 classrooms, not to mention the typical stuff, therapy, church, Awana (Wed. night church) and of course Annie's allergies and sicknesses, oh and the new eye gaze computer that we've been trying to figure out, and the upcoming IEP, did I forget anything? Oh, the rett syndrome walk-a-thon, Rett syndrome awareness week, James getting 3 teeth pulled,
hmmmm, OK, I think that's it.

Anyways, with ALL of that going on I have been pretty wrapped up in myself and my family lately. Which is a good thing most of the time but some times it can feel VERY self centered.

That's really the way I've been feeling lately.

Self-centered, bitter, angry with my circumstances, and feeling a total lack of support and empathy for anyone dealing with anything other than rett syndrome. Seriously, I have been horrible. I just can't see past rett syndrome I can usually strain myself to find at least one "silver lining" or back door blessing but lately......... nothing!

I've been a bitter person looking at the tree huggers and animal rights activists (and the many other organizations that don't mean a thing to me since my daughter was dragged into rett) like they are CRAZY. WHY in the world would ANYONE in their right mind support an organization like THAT when there are CHILDREN suffering and DYING???!!!

There, I said it, I'm a terrible person! BUT, (and here's my saving Grace), BUT, I don't like this person, I hate this person, I don't want to be this person at all. I have been trying to pull myself out of it for the past couple months but nothing has worked until..........

a magazine arrived the other day from Samaritans Purse. If you're not aware, Samaritans Purse is a Christian organization that assists the hurt, and impoverished. So they have this Christmas magazine that explains in detail different ways you can help improve the lives of these very deserving people. As I read through this magazine I thought,
"wow, it really could be worse".
There were ways to give to mothers who were having babies, no prenatal care, no postnatal care, there were ways to give milk to children, ways to save little girls from trafficking, and then, I saw it


every other need is so worthy, but I was moved to tears when I turned the page and saw this little girl in a wheel chair, wringing her hands (classic sign for rett syndrome) and the caption read "transform the life of a disabled child".

Wow!
OK God,
I GOT it.

I have it pretty, stinkin' good! And so does my little Annie. Although suffering daily from Rett Syndrome, she is suffering in a warm house, with a family that loves and cares for her, an extended family that will always support her. Resources, physicians, health care, insurance, adaptive equipment, therapy (with the best therapists in the world I might add), and support that will never quit as long as her mommy and daddy are here.

This beautiful little girl in the magazine, rett syndrome or not, is suffering WITHOUT any of these "luxuries". She is most likely alone, abandoned by a family who couldn't afford to take care of her. I imagine her fear, her loneliness, and her sadness. It's almost too much to bear. No child should live her life alone, no child should live her life in a chair, no child should live her life unable to communicate, no child should live in poverty - NO CHILD, EVER! But when these things collide and leave a child in the most helpless of helpless places we should never allow it.

There is always someone worse off and I challenge you to find a person more deserving then an abandoned, handicapped, impoverished child. No tree in the world, no animal, takes precedence over THIS child.

Sooo, the world can scream "go green" or "save the whales" but I'm going to scream back "Lets save our kids first!"

If you agree with my bitter rantings would you join me in helping "transform the life of a disabled child". I know it's early to think about Christmas and I know that special needs parents no matter what their income typically don't have "extra money" to shell out, but I pray that we can raise enough money to help just 1 little child just $250 from now until Christmas to show an abandoned, disabled child that someone is thinking of them, that someone cares, that someone understands a little part of their suffering. Click the link if you agree and scroll down to #7, every $1, $5, $20 donation will get us closer to helping a child who is so truly deserving.

Thursday, September 30, 2010

I Challenge You!

Tonight I sat in my bed , watching a little TV, unwinding. I hear a "MOM!!" It's James, he's fighting something so I run in "what is it Jay?"
"My stomach and my chest hurt really bad"
"OK buddy, come on down and into mommy and daddy's room"
James proceeds to hop in my bed and I ask him some questions about what's wrong. We discovered it's a combination of indigestion and gas. Poor James is curled up, holding his breath and saying "It just hurts so bad". My mind goes to Annie - she spends most of her day, most all of her day's in this type of pain. I tell James "ya know mom can give you some medicine for that"
"What is it?" James asks.
"Mylanta"
"The stuff Annie takes all the time?" He asks
"Yup." "Ya know when Annie cries and screams, this is usually the reason, her tummy hurts a lot and she's not able to tell me so she cries."
James: "I'd cry and scream too. She's really smart....... Rett Syndrome really stinks"
"I know buddy. That's why mom and dad are always asking people for money, so the researchers can find a medicine to take it away."
"Mom, I'm going save my money and when I have $100 I'm going to give it to the researchers so they can help Annie"
"how are you going to save all that money James?"
"I'm going to do all the chores I can here and at Grammy's and Aunt Jen's and Aunt Katie's"
"You have a good heart buddy, I love you!"
"Love you too mom"
You see, James remembers a time when Annie wasn't sick. When Rett Syndrome was "hiding in her body" as he say's. He remembers when she said "Hi Jay"! and threw a ball, and was able to grab him and hug him all by herself!
He remembers when she could play "peak a boo" with him.
He remembers when her hands worked so well she could actually hold a book and turn the pages.
He remembers when they could play together, not him doing "hand over hand" to play with her.
He remembers when she could crawl,

and feed herself.
When he was able to rough house with her, not worrying about "brittle bones" like he has to now.
He remembers when Annie was able to care for him, instead of him always being her caregiver.
James has been Annie's #1 supporter since she was born, just 16 months after him.
James remembers before Rett Syndrome. When his best friend could play. He tells us that whenever Annie's in his dreams it's always "after her miracle". He wants his sister back.


So here's my challenge to you. My 7 year old is going to raise $100. Can you match him?
What can YOU do to raise $100 in October - Rett Syndrome Awareness Month?
Skip dinner once a week for the month?
Skip the coffee at the coffee shop?
Ask 10 coworkers for $10?
Join us at Quest for a Cure and get pledges to walk?
There's a million ways to get your hands on $100
Will you take the challenge? Will you play your part in saving the lives of 30,000 little girls in the U.S. alone? Will you help relieve their pain and give them a voice? My 7 year old is! Join him in his fight to get his sister back! Visit Annie's Page to hear her story and donate on-line.

Wednesday, September 29, 2010

An Open Letter to Special Needs Professionals

This was posted as a note on a friends facebook page, I just had to share! What perfect timing with all that is going on in our lives lately!


An Open Letter to Special Needs Professionals

By: Pia Prenevost

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best... You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves.

We are your harshest critics. We are our own harshest critics too.

We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

----

This essay was previously published on www.thecrackandthelight.com

Friday, September 24, 2010

I know, it's been WAY too long!!

I haven't updated in a really long time. So sorry. You know, life, it totally gets in the way of everything that I have to get done :) Soooo, I'm giving you the shortened, run down of what we've been up to the past month or so....

School started on September 7! I now officially have a preschooler, kindergartner and first grader! Yikes!!
James is LOVING school! Which is such a blessing. He just loves learning, always has. He had a beautiful time in preschool but kindergarten for some reason wasn't the best fit for him. He's now going to a new school and he couldn't be more thrilled with 1st grade! I'm a little sad that he's gone ALL DAY! but to see him bounce into school and skip out of school with a huge smile on his face and tons of stories to tell me, well, it's sooo worth it!!! Oh, did I mention that he goes to the same school as Annie - LOVE IT!
Annie is in a new school as well. She had a LOT of changes happen in a short time. Annie was going to summer school and had an amazing teacher. This teacher was incredibly interested in Rett Syndrome and was excited to help Annie get her eye gaze computer. It was her job to help us with our therapeutic goals and after a few weeks I was so confident that she would just be wonderful for Annie. And then she moved to Japan!!! Oh CRAP! So thankfully Annie got a new teacher (pictured here) and YES, Dana is just as sweet and wonderful as she looks in this picture. She LOVES Annie! The only problem is that we are STILL having issues with our therapy goals (we have incredibly inappropriate PT goals and we have OT services but NO OT GOALS which is illegal but no one seems to care, even the lawyer that we hired last spring when this started - yah, I'm mad.) and we have not only gotten a new teacher but an entirely new team. So we are once again training, teaching, educating, and trying to get a whole new set of people to "understand" Annie! I can honestly say that I am so tired of trying to explain everything to everyone that I am just about ready to throw in the towel and say "forget it! she's not going to school anymore!" We have dropped her from full days to half and from 5 days to 4. We have LOTS of meetings set up so we will see how they go and try to find the best fit for our beautiful, eager to learn, Annie! I'm hoping and praying that we can get Annie into the right fit and get her some goals that she can reach for.
Honestly, could this child BE any cuter!? This is little Gracie's first crack at school. She is going to the preschool at our church. There's a little "separation issue" and I thought it might be easier to be at a place where she's familiar, uhhh, I was wrong. Gracie LOVES people but only people she knows, like the kids in our neighborhood I swear she would walk right in their house, turn on the TV and ask for a juice box, but people she doesn't know, she pretty much hides behind me and refuses to speak. Gracie is the kid that kicks and screams and cry's when her mom leaves the classroom (reluctantly, after a 1/2 hour of tying to acclimate her). So I'm patient because this IS her first time at school and Gracie, although upset about leaving me, is very eager to tell me all that happened in school and how fun all the kids are! Sooo, I'm hopeful that the separation will get easier. The great news is that Gracie is a smart little lady, she won't have any issues with learning and this preschool is so amazing about teaching the kids about the bible and Jesus - Gracie is already equipped with prayers that she's "teaching" the rest of us!
Little G - hard at work!

The next new thing happening with us is that we have ripped out our rickety, crumbling, carpenter ant infested, inaccessible deck and have put in a new cement patio with all the bells and whistles. We started with the front yard and added "ribbons" on the driveway to widen it so when we pull Annie in and out of the car in the winter our feet aren't standing in snow. We then put in a walkway from the driveway to the back patio. Finally we put another walkway from the main patio to a second patio that leads close to the
"jungle gym" for the kids.
Annie "supervised" the whole project!

We started with re-staining the jungle gym - thankfully EVERYONE helped!

Then we "demoed" the deck! Mostly Scott's job but we got some great help from Uncle Jeremy!
Oh, and Gracie!

This is the enormous dumpster, and NO, there was no problem filling it!
Then came the sod cutting and the gravel laying.

Here is the final driveway "ribbons"
The final walkway from the driveway to the patio.

The small patio and walkway leading to the main patio. The small patio will eventually be "Annie's Oasis" - filled with purple (her favorite color) flowers and fit with a padded glider that she can just relax on.
this is the main patio shaded by our maple. We got a fire-pit and a patio heater so we can enjoy the outdoors even in the fall. Oh, and it's completely accessible for Annie!!! She can "walk" everywhere!
We've been enjoying it by roasting marshmallows,

The kids have loved riding their bikes, scooters and pulling Annie in the wagon all over the patio!
Look how happy this little girl is! I know 99% of it is because she's with her daddy but the other 1% is because she can use the WHOLE patio and get up the the jungle gym to play with her sister and brother!

Next we celebrated Jay's 7th Birthday!! Oh man, I know, he's 7!!! Instead of a "friend" birthday James opted to go camping with his family - my little outdoors man!
Jay leading us on a hike
Annie, loving the outdoors! (rockin' the 80's pony tail!)
James, cooking dinner
James, hard at work!
Annie, loving every minute!
All 3 at the campfire!
How Gracie camps!
We spent Friday night with just the family. The cousins came up on Saturday, just in time for the rain. All the kids came back to our house for a sleepover in front of the fireplace in their sleeping bags watching movies and eating pizza - nice and dry!

Sooo, other than that, not much. Oh, Annie climbed a tree for the first time (just kidding but look how happy she is to be sitting in a tree with her brother!). Ok, so that wasn't such a quick post but I had to get in all the pictures! Oh, and we have gotten APPROVED for Annie's eye gaze computer the ECO 2. It arrives in just about 2 weeks! So there will be a lot of talking going on in our house. Stay tuned for videos!! :)