Our So-Called Life.

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it.  Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...

It has been a loooong time since I've written, but its time. I need an outlet and the world needs awareness. If you are new here or don't know by now my son, Cade, who is now 7 (almost 8) is a fun, loving, genuine boy who happens to have been born with a rare genetic disorder. Prader-Willi Syndrome. See below from www.fpwr.org if you are unaware of exactly what Prader-Willi Syndrome is... The symptoms of Prader-Willi syndrome are due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. An unregulated appetite and easy weight gain characterize the later stages of PWS. These features most commonly begin between ages 3 and 8 years old, but are variable in onset and intensity.  Individuals with PWS lack normal hunger and sa...

This Friday Cade starts Kindergarten, with an excellent teacher once again...I am hoping for a great year! I am creating this post to have Elizabeth Roof's excellent video tool at my fingertips for his team to view.

I can't believe we are celebrating your 5th birthday today. It seems like just yesterday I was awaiting your arrival. Boy, what a whirlwind it has been since then.  I have watched you go from a tiny, helpless newborn to a boy who already has his mind made up about just anything. You have taught our family so much about being strong and loving endlessly. You bring opportunities that I never imagined possible when I first held you in my arms. Life-long friendships have been made because of you. I will always encourage you, respect you, be your biggest fan, your advocate, and your supporter. I will always hope for a brighter, more accepting tomorrow. But above all, I will always love you for who you are.

So, I was contacted a couple of weeks ago to do an interview with WDSU News Channel 6 and Children's Hospital. They wanted to do a segment on RSV awareness and Cade's personal story with RSV. The advocate I am made the trip to CHOLA and you can view our segment  HERE! I think it was put together really nice!  RSV was such a tough, trying time in our lives and I am more than thankful to have Cade here and doing so well today!  Check us out! 

Disclaimer: This blog post is featured on Jennifer Pastiloff's oh so amazing blog that can be found  Here ! COURAGE ,  DEPRESSION ,  GUEST POST THE BALLS OUT TRUTH ABOUT DEPRESSION. AUGUST 13, 2014 By Amy Ferris. This is what i know this morning post coffee pre wine yesterday my friend asked me, did you ever try it? yes, i said, yes, i tried suicide. obviously, this was all around the news of robin williams & his death. yes, i said… i was young, much younger, and so sad, i was so miserable & so unhappy & i felt all alone in the world. i felt like nobody knew what it was like, this damp darkness. everything was pitch black. there was no color anywhere. it was dark & lonely, and the best way i can describe how i felt at that time in my life was like being in the middle of a forest, and it’s eerily dark, and you don’t know which way to turn and so you take baby steps. teeny steps because you don’t know where you are, and you can’...

So, its only been forever since I have posted and have really let my blog go. I have been wanting to take the time and start it up again. I have lots on my mind and in my heart to say, so here goes... Well, today a great man's life ended. My Grandpa. He has been sick and suffering for a long time now and finally is at peace, and knowing that brings me to peace. It sure doesn't make things easier for the loved ones he leaves behind, but it is reassuring to know his pain is gone at last.  I just got back from a good mind clearing run and thought about Paw almost the whole time. I created this sort of timeline in my mind of our life together. I was thinking back to my earliest memories of him. I was about 5 or 6 and we use to go to his house often to eat supper. Cooking was his talent and passion...most of you know this. But at that age, I never wanted to eat his cooking. I would turn my nose up to everything. He would tell me I didn't know what I was missing(and boy ...

Whoa, it has been forever since I have blogged. As a Mom of 3 busy, busy little bodies I just have No time to get to my computer to blog. Today I am finding time, because there is an issue that is weighing heavy on my mind. Parents of school aged children, Did you know that every school district should be enforcing their designed Wellness Policy? Click on the link below to take a look at Stacy's AMAZING Blog, this is a HUGE resource for myself.  Click here to read!

So, we have gotten to know our neighbors pretty well lately and it has been great..Cade loves his "friend"..He is asking every day to play,and I can never deny him..he is so sincere about it.  They even had their first sleep over.. They are just 1 month apart and adore each other.  It is the sweetest thing ever.  I love Cade's enthusiasm to play and the joy making friends brings him.  Sadly, I know that making friends won't always be easy for Cade...and I hate that. But for now, I will try not to focus on the future, but instead the present.  I will take in all their sweet giggles and the joy it brings to everyone around. 

It has been nearly 3 months since I have written last and yep, you guessed life has been busy around here. But really, who isn't busy these days?  School is in full swing and Carter is enjoying Kindergarten for the most part. Some days are boring he says, and he doesn't want to go back, but for the most part it has been great. One more month until he turns 6 years old. I love birthdays, but hate that my baby is not so much a baby anymore.  Cade has full week of therapies again and I don't know how, but always find room for more. He is such a busy, hard working little guy and still such a joy to everyone he comes in contact with. I hear so often from his therapists how he brightens there day and is so eager to learn. They say what a nice touch he brings to their day..I just agree, I am his Mom, I am lucky enough to experience that joy 24/7. If you haven't heard already Cade's diet is even stricter now..no cheating. No sugar, no grains, and barely any carbs. ...

As most of you know 10 days ago we were blessed with a beautiful baby girl. Camille Grace Richard 7lbs 7oz, 19 inches long Very proud  Big Brothers! Everything went great and it was so nice to have such a smooth and uneventful delivery. Our family is now complete and we couldn't be more happy right now. Carter and Cade have adjusted great and have been so helpful.  A previous written post which can be found  Here  details my feelings about my delivery with Cade and my hopes for healing old wounds. While I found it healing to be able to experience that "normalcy" again, for the last time..I also still couldn't help but think about all Cade's struggles. Which will be a forever thing. But, Nonetheless, I love where we are at in life now.  A 5 year old, 3 year old, and newborn... Life couldn't be better...or busier! ;)

Life for our family has been such a whirlwind lately. Geez, where do I start?  I am finally wrapping up totals from our One SMALL Step 5K and proud to say we have raised about $24,685.00 !  I am so thankful to those that stepped up and worked hard to help us achieve our goal! We had another great race day and had some wonderful families that shared it with us. It is always great to meet and mingle with new PWS families who are eager to be part of the bigger picture!  And of course, the people of the community whom have no connection to the cause, but just come out to run a great race or show their support. That is always comforting as well!  Then, my personal family and friends who I can always count on to be by my side...Love you all!  I have to say it has been nice to get a break from our daily therapies with Cade.  As of May 14, Early Steps ended and so now we just have what we were doing outside of Early Steps, which was Speech 1x/week ...

Another birthday has come and gone for Cade. I can't believe he is 3 years old! The first two years were filled with many ups and downs and I am certain we will start seeing many more ups now. He has developed the best personality and is such a joy.  He had a great birthday party Saturday, despite the weather...family and a couple friends made it all worth it. Yesterday was his actual birthday and we continued the celebration. Lots of singing Happy Birthday which makes him giggle and squeal with excitement! We ended the day by going to Chuck E Cheese. No pizza, just games...he loved it!  So serious... So serious...again Dancing away to the Bob the Builder song...He loves music! We are beginning a new journey now that he is 3. He has had to say goodbye to all his Early Steps therapists and now will get minimal services through the school system. That will all start up in August when school starts. This week he has gotten to meet with the...

Today was my pre-admit appointment  I had not been back to The Women's Center at Terrebonne General since the day we so eagerly brought Cade home from the NICU. I thought nothing of this appointment up until today when I turned in the parking lot. I was instantly hit with vivid memories of 3 years ago when every day consisted of going there.  I pulled into that parking lot, circled around for a parking spot, and walked through the same door, and went up to the 2nd floor...For  28 days straight ....   I did all those same things today, but never imagined those feelings were still so real. When I walked through the door the smell hit me in the face and immediately took me back. I got nauseous. I walked to the elevator went to the 2nd floor and tried to avoid even looking towards the hall where the NICU door is. The whole time talking to the lady about pre-admitting and listening to hospital procedures and things I had all heard twice before, my mind cou...

The time is here to transition from Early Steps to the school system for Cade. The thought of everything is making my head spin. Yesterday we received Cade's evaluation report, which showed what services he would qualify for and then today we got the letter in with our first IEP date. EEk! I am prepared to set him up for success and nothing less!  I can't believe this little guy will be 3 years old in less than a month! So Bittersweet.  I feel so blessed to see him prosper and grow from the once weak and helpless baby he was before. But, also with each passing year I know it brings on more challenges and PWS rears its ugly head further and further. I hate the fact that he is getting more and more defiant, needing strict structure and getting hungrier. :( But, there are so many more things that I absolutely LOVE.  I want Cade's future to be filled with happiness and laughter...not pain and hunger. These are reasons why I raise money for research. I k...

Things have been super busy around here! Spring is here and it makes me happy!  But the change in weather has my boys with colds...Blah, that makes me Not happy! I am hoping we can kick them quickly. Carter is fine, but Cade is extra snotty. I am doing everything I can at home to stop things from getting any worse..hopefully it will work. We have a busy weekend and sick kids are not a part of it! I am at the 6 month mark in my pregnancy (Yes, I am pregnant for those who didn't know) and today was my last appointment with my MFM, Maternal Fetal Medicine doctor. I have been reassured over and over that things are looking great and there is no need to keep seeing  the specialists at this point. That is good news. All of my nervousness and fearful  "What If" thoughts have subsided at this point and I am feeling great! Not to that miserable, huge point yet...pretty much the perfect part of my pregnancy right now.  I might as well embrace it while I can....

Cade and I headed to Lulling today to meet with a new PWS family and WWL TV News reporter Meg Farris.  It was a great visit. We are so very thankful for the awareness that this will bring to our area.  Meg, was so personal and compassionate. She stayed for nearly 2 hours for a sit down interview.  I will be sure to let everyone know when the segment airs and post the link! Check out this sweet girl Kylar...7 months old with PWS.  Cade just loved her!!

I finally took the time to create a new, updated video for Cade. I can hardly believe where we are now in comparison to the first video I made. Watch the difference and see for yourself. I knew my guy would accomplish great things, but it would have been a lot easier on me to know just how freaking cute and amazing he would be at almost 3! I would like to thank all of my dear friends who have watched and shared my videos and fundraising pages. It means so much to know that you care and want to help. The support and love felt is overwhelming!  Without awareness there is no funding and without funding there is no research! Keep sharing and spreading awareness for PWS! (Made when Cade turned 1!)