Laura Stants
laura@our-sma-angels.com
27 Nov 2001
15:27:58
Laura Stants
laura@our-sma-angels.com
27 Nov 2001
15:27:58
Hi Payton, I just wanted to leave a message and test your journal and say that I look forward to getting to "know" you!
Hi Payton!! We love you!! Love, mommy and daddy!
Hi Payton, How are you? Are you being a good boy? He's always a good boy! We really enjoyed visiting your web site. We love you very much. See you real soon. Love, Grandma and Grandpa
Hi there little man! We love your webpage and most of all your pictures...We miss you and hope to see you soon. We are so proud of you for being such a courageous, brave and smart little boy and we're are so happy you are doing well. Ryan wants to show you more of his toys and wants you to come over soon...bug your mom and dad so they bring you over!!! Love ya, Regina Jim and Ryan
We just want to say hi and thankyou to all that come to visit Payton at his website! I will definitely update pictures often so be sure to look and a HUGE thankyou to Laura Stants for putting all of this together for Payton and our family!!! Take Care everyone Deb and Rob and Payton
Hi Payton and all The Freeman household.Love the site.I put it under my favorites so I can pull it up anytime.Your proably watching Toy Story as we speck.I'll let you get back to the movie.Yell real loud to keep mommy awake ha ha love, Sandra
Dearest Payton and of course Deb & Rob, This web site is COMPLETELY & TOTALLY AMAZING!! I was so moved reading "your story" and seeing all your wonderful pics. (I know there will be more pics to come soon, Deb, I just couldn't control myself!!) :-) Payton, I love you VERY MUCH & you have the VERY BEST Mommy and Daddy in the entire universe! I know I can speak for everyone by saying that we are praying every single day for a cure... I love you ALL, Marni
this is to commend you deb and rob.. you are the 2 best parents and Payton could not have made it this far with out you..Rob you are my son and i don't know how you you do it but i am so proud of you for all the love you have and give to payton and your loving wife and my wonderful daughter-inlaw, who truly came from the heavens. deb is like an angel herself, calm, relaxed and beaming with love.. you both make life worth living.......every day we have payton is a given and don't anyone ever say it will never happen to you because it can... we love you g-ma roz and bill kisses to payton my #1 grandson0!!!!
hi my little angel.. i miss seeing you since i live so far away but i think about you often..i remember walking you to the dock so we could hear the birds when you were little..i love you payton! keep bugging your daddy when you don't like his choice of movies.. i don't blame you he has lousy taste in movies that is.... love g-ma roz and bill see you soon xoxoxoxoxox
Dear Payton, Debbie & Rob
What a beautiful website! Keep fighting, my prayers are with your family!
Hi Payton, I love your new pictures. You are a very handsome little boy. Your mommy and daddy take such good care of you. I love them and I love you too, very much. Love, Grandma
hi my sweet little boy .. your little photo album is so cool... all those people who love you very much.........see you soon love and kisses grandma roz oxoxoxoxoxoxoxoxoxoxoxoxoxox
A life filled with love is a good life, the best life... and WHAT a good life my nephew has! My love to you and to your mommy and daddy, too.
i love the website... you are so precious... and so are your mommy and daddy... love to all...kisses to all... Unka Rick
Hi Payton, I hope i get to see you soon! Love the pictures!!!
Hello Payton,
I love your web page. Just think Payton, you will be able to look at your own web site when you get the high-low chair!! Won't that be the coolest. Rest up for Wednesday. Hugs and Kisses,
Susan
"To infinity and beyond!!!!!"
This is a great site, and thanks to Rick Dillman for sending it to me. Keep up the good work, and continue fighting the good fight.
Best of love to all of you. I hope to see all of you again soon, especially Payton.
Hey Payton!!! Wonderful pictures, I loved every one of them! You and your mother and father are awesome (and grandmother and grandfather too)!! Love to all the Freemans and Letters!!! Uncle Bobby
Hi out there! We are so thrilled to have this site up thanks to Laura Stants! We have added pictures so be sure to look and I will update them often!! Payton is doing well, except for the constipation that has him very uncomfortable right now. I think he spent more time awake last night with Sandra then he normally does. This morning he finally got a suppository and he is CRASHED now. I think he is a little exhausted!! It is so nice to see everyone's' entries to Payton's' site!! I will be sure to write on here often with how he is doing and what we are doing,etc.. Love to you all!!!!!!!!!
Hi Payton! I just left your grandmothers shop and got the best haircut ever. I see your photo in Roz's station every time I go in and we always talk about you! You are so loved. I want to wish you a very Merry Christmas and a wonderful New Year. Ann
I know your gramma Roz. What an amazing story. You have learned so much about yourselves and the truly important things in life. God be with you.
hi Payton, my name is Sophie and I am the girlfriend of your cousin Matt, I live in France and your aunt Amy sent me your website's address. I saw you once last year when you just discovered the world. You're so cute! I hope I will see you again, maybe next summer... if that doesn't bother your parents of course! Deb and Rob, I want to tell you that Payton is lucky to have parents like you. I am very moved by your story and I keep asking Amy for news about your wonderful son. Keep fighting against the disease because the weapon of love is stronger than anything else. Take care! Love to everybody and hugs to Bob and Debbie. Sophie
Hey Bud, I Just Wanted To Tell You How Very Proud I Am To Be Your Dad, And That I Love You So Very Much! And No Matter How Bad My Day Is Going, Just One Big Kiss From My Little Bud And I Forget It All. I LOVE YOU, Love Daddy P.S. I Love Mommy Too.
hi my little boy! see how much people love you and how many hearts you have touched and you don't even know them..i love you little man and your mommy and daddy too!!!!xxxxxxxxooooooooooooo
grandma roz & bill
Robert and Debbie, Your always in my thoughts. Your journal is very special. Love your aunt candy
Hi The Freemans!! I think this website is so special to everyone who knows payton as well as those who don't. I hope this educates all the people out there who don't know what SMA is. Payton is very special to us and we love him so much, We never take anything for granted because of him. To Rob and Debbie, you guys have taught us the true meaning of love. You guys love payton so unconditionally and we are so thankful to have you in our life. We will find a cure for this disease, because we have dedicated people like you trying to find a way to make it better for everyone else. Thank you for being so thoughtful. We love you so much little guy.
Hello Sweet Payton! I love the new pics, Deb & Rob!! My absolute favorite one, however, is "Payton at 7 months"....I just love his smile in that picture!! Every time I go online, I check Payton's site, I love to read everyone's comments and to look at the pictures! This was a WONDERFUL idea!!! Kisses to all of you.... :-) Love, Marn
Hi, I am one of your cousin Matt's French friends, and he gave me the url of your site. You have a cute wonderful baby... I admire you for your courage and your strength. I wish they will soon be able to find a way to help your cutie child to feel better. I am happy you found friends and nurses who have been able to support you. Hugs.
Hi out there! Payton had 2 doctors appointments today. Both were in West Palm Beach(I cannot go anywhere with Payton alone-in case he needs help breathing, gets a mucus plug,etc.-so my wonderful mother takes 1/2 a day off of work to help me whenever we have these visits)and we drive for about an hour to get there. Payton absolutely LOVES going for drives. I think he feels more mobile or something and just loves watching ANYTHING and EVERYTHING go by... First, he got his RSV shot, which he anticipates now,because he is so incredibly smart:-) and desats before the shot even goes in. Then, it was across the hall to the GI doc, Dr. Adams (who we really like...very smart,professional and helpful) where he got his mic-key (g-tube button) replaced. Payton HATES to have his g-tube messed with and basically hates docs period so he really freaks in Dr. Adams office EVERY single time we go there. It sucks because every time we see a doctor, they see him at his worst, purple faced and desating...me applying the bi-pap and Payton giving it all he's got just to put out that cry. Anyway, as usual, as soon as we left the office, I'm talking before we even get into the elevator, he was all bright eyed and happy.He is such a trooper. He just doesn't like docs and I don't blame him. We just got our denial letter for the hi-low chair. THis is something that we would use to lift Payton up high and move him around the house so that he isn't stuck on the couch all the time(Payton has to stay flat, otherwise he gets mucus in his airway, aspirates, and basically can't breathe). Even lifting him up to move him has to be done quickly, so we figured the hi-low would be great, but ins. says that it is not a medical necessity. THey consider this a "luxury." Ridiculous I know, but this is common dealing with ins. You must fight for EVERYTHING. They don't just give you what you need, even with doctors notes, etc... you HAVE to fight. And being that we have our work cut out for us as it is, this fight gets very tiring, esp. when you don't win. We are also in the middle of fighting for formula or help with it, because Vivonex is so expensive. They denied us for that because they sma is not inherited. HaHa. So anyway we gave them proof that it IS inherited and they told us that it doesn't matter, it has already been denied so now we are going through the appeals process. Can you imagine if Payton was an adult and had to deal with insurance on his own? He couldn't. And I have a feeling that there a TON of people in the world that are sick that end up not being able to get what they need because they do not have the time or energy,etc...and I'm sorry but that is complete BULLSHIT! Anyway, on a lighter note. Payton is looking very cute these days and I should have pics of the wedding and recent pics of him up soon!
Love to all!
Hi Payton,
It's me your #1 cousin Ashley. ;) I LOVE YOU. I hope you feel better. Be good because Santa is coming soon! I love you very much and send me A email. I miss you very much Ashley .
Hey little guy,
I want you to know that you are ALWAYS in my thoughts. I hope you are enjoying the presents we brought to you last month. You seemed to like the vegetable dvd. I hope you haircut is growing in nicely. You'll notice after 6 weeks or so you'll have to get the ends trimmed. I'll email you soon, and keep being a good boy in the mean time.
Love, Aunt Holli
hi my little angel. hope you are having a good day today..watch a good movie and put your feet up and relax..i love you and miss you...kisses to you... grandma roz p.s. tell your dad i hope he enjoyed the music awards and let you watch them.........
Hi Payton, Mom & Dad. I came across your website by chance at work. I believe you are a very lucky little boy. You have the best parents in the world. In return they have the best & cutest son. I don't have much however, If I can help with giving what I can I'd like to give what I can to help you receive your high low chair. I will tell all my friends about your website, I'm sure they will want to help as well. Stay strong Payton, you have mom & dad your very own angels at your side.
Hi PAYTON, Rob & Debbie,
All of you are always in my thoughts and prayers, We love you all very much.... Love... Heather, Dallas, Chace & Russell
Hi Debbie, Rob, and Payton,
Thanks so much for sending me your website. The pictures and your story are very moving. Previously I could only try to imagine what you were feeling and experiencing; I really appreciate your sharing some of that with us. I am proud of you all and your parents. I especially enjoyed my visit with you last June. Great grandpa and I love you all very much.
Love,
Great grandma Helen
Dear Debbie, Robert, and Payton, We were very touched by your story and the outpouring of love from your friends and family.We had never before heard of SMA and now are wondering why? How can we h elp to eliminate and/or bring more awareness to other people? Payton ,you are a beautiful gift from heaven and are very lucky to have such WONDERFUL parents. Robert, Debbie, I give both of you more credit than I ever thought was possible. You are both amazing. I have only seen pictures of your son and he is a perfect mix of both of you. Holli keeps me updated on what's happening and I am pleased to hear he is doing ok. This webpage is absolutely beautiful,thanks Holli for showing it to me. Rob and Deb you are always in our prayers and thoughts. your friends in Daytona Beach, Deb and Deb.
Hi out there! Thanks so much to all of you for checking out this site and writing to us! It really does mean a lot to hear from you all on this site!! It is a great way to keep in touch and keep everyone updated!! A lot of people ask us how they can help,etc...We had a benefit last year through Outback that raised a lot of money for sma research. 100% of that money went to FSMA(Families of Spinal Muscular Atrophy). They are a 100% non-profit and 100% volunteer (this is because it is run by parents of children like Payton). They give 80 cents on the dollar to research, 17 cents to an equipment pool, and 3 cents to keeping them up and running. They provide a message board that I read daily (www.fsma.org/) and have helped us on many occasions with info,etc....We are going to have the second annual "So Many Angels" benefit again in 2002, probably late May, early June. All I know so far, is that we are definitely doing it again, and we have our work cut out for us!! For those of you that want to help, we would be forever grateful if you helped with the benefit. Our biggest concern is to find a treatment/cure for this disease and to save our son from dying from sma, so we are commited to this benefit and want to raise as much money as possible for research!!We are soooo close to a cure/treatment!!!I have been told by the most reliable of sources that we are about 14-17 million away from a probable treatment/cure. So that is our goal...Please tell EVERYONE you know about the benefit and please e-mail me with your addresses so that I can mail you invitations (pjf714@netscape.net). If you can help with the benefit as far as volunteering, please let me know. If you know anyone that would like to donate anything please let me know (I have all the tax ID info-to write it off, etc..)And if you can think of anything else that might be a good suggestion or anything I might be forgetting, let me know!! We appreciate ALL the help so much!!!ALL the generosity of so many people!!! And we know that we will find the cure for this horrible disease sooner with All of your help!!!!!!!!!!!!
Hello Payton, Deb and Rob; Just wanted to write in response to the upcoming benefit. I would LOVE to help in anyway that I can. Please know you ALWAYS can count on me!I am here for you... I love you, Marni XOXO
Hi Payton!
You have a very beautiful story to tell. We look forward to meeting you in person soon. God bless you and your wonderful Mom and Dad. Do you like Clifford the big red dog?
Love, Aunt Marge, Uncle Mark, Jacob and Joey
hi payton Its me ashley you are my #1 cousin I love you vrey much Hi rob I MISS YOU VERY MUCH hi DEBBIE I miss you very much Ilove all of you very much from ashley .
hi to my #1 precious little boy.........hope your having a good day..........love to all of you......keep up the good work.. the web page is really awesome....you know i'll be there for the fundraiser............i wish i could do more....... love g-ma roz and bill
Hi Payton and family. Debbie, thanks for posting on Conner's site to tell me about Payton's. I love it! Conner absolutely loves Buzz and Woody. I really do hope I can get down to the next benefit. I'd love to meet Payton. I'm sure he'd remind me a lot of Conner. He does in the pictures. I'll be keeping up with the site to see how Payton and you all are doing and I hope to meet you in person one day soon!
I just want to say hi and thanks for visiting to all that come to this site! Also, I do not know who Clifford the Dog is Aunt Margie!? But I do love Toy Story and Veggie Tales and Shrek. I would have to say that Toy Story is my all-time favorite. I have now seen version 2 over 1 million times!!!!!!!!JK :-) Really only about 800,000!:-) Also, I want to say that I miss my cousin Ashley, we watched Shrek together when she was here and I want her to come and watch movies at my house!!I love you all and thankyou for caring about my fight and for all your help! Payton James Freeman
Rob, Deb & Payton, This is absolutely beautiful- I plan on sending everyone in my address book the link to this site! It is a pleasure to know such loving people like all of you. You are amazing and courageous! Payton is so lucky to have such wonderful parents, family, and friends who love him so much! And of course we are blessed to have Payton in our lives. I tell everyone about Payton. I love him; he is such a handsome and wonderful boy. I'll always remember the first time I met him; It was a joy not to be forgotten. I look forward to seeing you all again soon! Love ya, Jennifer
Hi Payton, I love all your pictures. Toy Story is one of my favorite movies too. I hope I get to see you again soon. Love your cousin, Molly
hi Debbie, Rob and Payton - You all are such an inspiration.....Payton is so lucky to have such a strong , brave and loving family. The pictures are beautiful, he has really grown since i've seen him! This site is so great and you have done such a great job with it! i'll keep checking for new pictures! love and prayers always - Brooke
this is from samie in her words: Payton is so cute, I want to go see him and watch toy story with him too, and hi to aunt debbie! she says she could also bring her clifford tapes!!!
Hi everyone!! I am pleased to say that Payton is finally over his constipation nightmare and he slept for about TWELVE hours last night! He used to do that alot but not lately!! Rob and him are playing fart games right now...don't ask...I don't even know:-)
Well, time for bed...tomorrow is a long day...love to all!!
Hi Rob, I have,nt seen you since you were very little, 2 or 3 yrs. old I guess. Your Mom & Dad named you after me, Robert Joseph. I was real good friends with your Mom & Dad, and still am of course! Your Dad has been up to visit me a few times in the past, and I went down to visit him this past July. I live up in the Boonies in Northern N.H.--Pittsburg, Moose-Country! I've also been in touch with your Mom, I found her through Classmates.com . She wants to come up here to do some Snowmobiling this winter. I want you and your wife to know that my Prayers are with you both. God Bless you Payton, I wish I could meet you someday. Your parents Love you very much, along with a lot of other people pulling for you. Sincerely, Robert J. Murphy
Hi Debbie, Rob & Payton: Thank you for sharing your angel with us. He is one of the most beautiful babies I have EVER seen. And his smile is so precious. Looking at his pictures makes me smile because he looks so happy, but also sad because I know what you are all going through. SMA is a nightmare. Your family is a true inspiration and testament to the amazing nature of the human spirit. I will pray for you all and ask my little angel Andrew, or Booper, in heaven to watch out for your little Payton. I pray for lots of smiles for all of you. Thank you for loving your son so much. Love, Gina
Hi Payton and Family, Sorry I missed you Thurs.Have had a tooth ache.Sure do miss you.Are you keeping Mom busy?I'll see you Sunday. Love, Sandra
hello everyone, first things first, i just want to say how nice it is to hear from each and everyone of you. paytons web page helps all of keep in touch and allows people who are new to S.M.A. to understand that you don't and shouldn't give up, I know that as i pictured life as a dad i thought some of my major problems would be, mcdonalds or burger king, or what number my son would wear on his base ball shirt, i always thought he would be number 22 like his uncle Ryan. I thought that when we started to go to see the dolphins play on Sundays that i would somehow pull for the fins (paytons #1 team), and with everyone's continued support for a cure we can watch all of our little angels hit a homerun. thanks to everyone who reads this and don't forget about our big fundraiser tell everyone. together we will find a cure, we love you all. P.S. I LOVE YOU PAYTON AND DEBBIE.
Hi Payton!
I am one of your Aunt Amy's friends here in Arkansas. Although I haven't had the pleasure of meeting you personally, I know that you are a great fellow who has brought joy to the lives of all who know you.
God bless you, your mother, father, and everyone else who loves you(we are many),
Doug
Hi Payton! Your Aunt Amy is a friend of mine here in Arkansas and I'm so glad she let me know about your website. I'll be keeping you and your mom and dad in my thoughts. Thanks for sharing your brave story. You all are an inspiration.
Sandy
Hi Payton,
What a beautiful baby you are. And what strong and loving parents you have. I too am a friend of your Aunt Amy's - I should have known the rest of her family was as terrific as she is. Best wishes to all.
What a beautiful boy Payton is....his eyes are beautiful. I too have a daughter and have also lost a son with SMA type 1 and we too are fighting for that cure!! Keep fighing Payton and Lily sends you hugs and kisses!!
I'm also a friend of your Aunt Amy's.
What a beautiful baby you are. And what strong and loving parents you have.
Best to all, Elizabeth
Well Payton, we haven't been formally introduced, but I am friends with your Aunt Amy in Arkansas. It's kind of crazy, but I got a late start going to school, so I'm closer to your grandmother's age than your aunt's. Your grandmother really threw me for a loop looking at these pictures. I was looking for that little old lady in the Tweety Bird cartoons, you know, with the cane and shawl and the glasses on her nose? Yeah, her. My grandma passed away last spring and she was 96. Now that's a grandma. I think I want to move to Florida with you, Dude. All the women in your life look young for their age.
You know, I have a daughter who is 11 now. When she was four she started having trouble breathing, especially at night. The doctors told me it was asthma. But the medicine didn't help. It just got worse. She was falling asleep during the day and they tested her for narcolepsy and all kinds of exotic stuff. She started wetting the bed again and losing her motor skills. She couldn't write her name anymore. The doctors never could figure it out and finally they told me to just enjoy her while I had her. She started vomiting in her sleep; her digestion was shutting down at night. Her limbs would be asleep and she couldn't walk when she woke up and it would hurt to get her moving again. Finally, a doctor had the bright idea to put her in a sleep lab, because I kept taking her to doctor after doctor just because I knew someone had to tell me what she had at least. And they found out she had a sleep apnea and with two operations they were able to restructure her breathing paths and remove the obstruction. It was a long time before she got all her motor skills back. But I do know about nurses and doctors who have no idea how to deal with people's lives. Today, earlier, I was telling that daughter she better get her act together and wash the dishes and I was wishing I had some time to myself for the millionth time this year and I forget that I have been given the miracle of my baby not once, but twice. Maybe, today, in a small way, for a third time. Payton, you are a beautiful human being and I cried those big starlet tears down my cheeks reading your mom's story on this webpage. I want to tell her that sometimes there are miracles, and that if I could have another one, I would give it to her. You are beautiful and alive and that's all anybody has today, just today, and no guarantees about anything more. I hope you get lots more. Lots lots. I wish you time and life and miracles, but not love. I think you have plenty of that already.
You know, your Aunt Amy said to look at the pictures so we could see she didn't know how to hold a baby. Don't tell her I said this, although you probably have noticed this for yourself, but she is full of kaakaa once in a while. There's only one way to hold a baby, and she figured it out already. You hold a baby with love. I would like to hold you too. Here, in my heart. :)
Hey, Payton!
I'm ANOTHER friend of your Aunt Amy here in Arkansas. From the looks of your journal, you are making new friends every day! I'm not surprised. You are a brave, handsome dude, and I am glad to know you. This is the first time I have heard of sma, and you can be sure that after hearing about you and your wonderful parents, I will be finding out more.
I see from one of your shirts that you like the Dolphins. My brother went to the University of Miami, who will be playing some time around New Year's Day. Will you get to stay up to watch the big game?
Gotta go now. You and your family will be in my thoughts and prayers always.
Peace and love, Jim.
Hi Payton! I am a friend of your Aunt Holli! Your web site is wonderful. You and your family will be in my thoughts. Happy Holidays to all the Freeman's and all those who visit this site.
hi payton, i'm yet another one of your aunt amy's friends in arkansas (we're a very loving bunch, ain't we?) i wanted to tell you that the doctors only gave my dad 2 weeks to live, and they couldn't have been more wrong. so you hang in there.
Payton, You are such a handsome boy! I pray everyday for a cure for this terrible disease. Until then, stay strong and keep fighting. Once they do find the cure, hopefully you and Skylar could meet and play....Wouldn't that be great?
to the cutest ring bearer in the world,PayJay, and Mr. and Mrs. Freeman of course, loved the site. the "toy story" wallpaper...very appropriate. well just wanted to say hi and I LOVE YOU so very much. can't wait to see you soon. missing you. xoxoxox love always, jax
hey lil bubba.. i just stopped in to get my daily dose of good feelings... and to remind you that the dolphins are playing tonite... tell your daddy to let you stay up if you can.,..lol..good night payton..sweet dreams love to your mommy and daddy, Unka Rick
Payton, I hope you like your signing snowman! My Mom picked it out because she thought you would like it. I can't wait to see you again! Rob & Deb, Gabe and I would love to help out with the benefit! Please let us know as it gets closer how we can help. I can't wait to see the new pictures from your wedding! Love, hugs and kisses to you all!
Hello out there!!It seems my sister is more popular than we thought!!:-) Arkansas is an awesome place with lots of great people!I have all good memories of Fayetteville and the Razorbacks,etc..thankyou all for watching out for Amy while she is on her own for the first time!!:-0 Hee Hee..Love you Aim...Seeing all of your messages on this board is wonderful for us and our family...I promise to keep everyone updated on Payton and the benefit. As of right now, we are waiting until after the holidays to start organizing the benefit. The first thing we do will be get the venue confirmed (which will hopefully be Nova University again) and when that happens, things will start to roll...Jim, I think you asked about UM...yes, he can stay up and watch as long as it doesn't interfere with a Bills game!!.....Payton is good...he is already asleep! He usually falls asleep between 12-2 if we are lucky and tonight he fell asleep fine. We had a very busy weekend but tonight we took Payton around our entire neighborhood looking at lights, and fortunately for us, our neighbors really get INTO it!! So Payton loved it-( he REALLY loves lights) and Rob,my dad and mom and I enjoyed watching him have a little fun!!...Roz, I never got the phone# for Novartis.Did you get it? If not, call me and I'll get it from one of Robs' invoices....Well, it is time for bed...
Love to all! Debbie P.S. I love you my sweet Payton and my sweet Robert too;-)
I forgot! I also wanted to send out a huge Happy Birthday to Jenn H!!! Thank you for being such a great friend and so good to Payton!! We love you! Rob, Deb and Payton
Rob & Debbie, Thank you so much for allowing me to help out and see Payton. He is such a doll and I always feel all the love in your home. You are very special people.
Denise, Speech Therapist
To Payton, Debbie & Rob,
I'm a friend of Amy's in Limerick, Ireland and I want to say that your story, filled with so much courage and bravery, reached deep within me and will be a source of inspiration forever more. I think you guys are leading the most extraordinary life filled with more love than most of us can imagine.
If there is anything I can ever do for you on this side of the Atlantic just e-mail me. Don't hesitate, not even once, as I can imagine no nobler cause than to help the wondrous Payton.
I look forward to hearing more about your amazing family and seeing some more photos.
Best wishes, Naoise.
Great pictures! Best wishes for the holidays, John (Amy's ex-teacher, FAU) Amy had mentioned making contributions for sma research, yes? Let us know if we can help.
Hi Payton, Mommy, & Daddy,
I love your website. I really enjoyed all the adorable pictures. What a handsome boy!!!! I will check back often for new pics. Mommy did a great job with this site.
Love you all, Reea
To Payton's family... My name is Julia, and my best friend Jennifer Haws emailed your site to me. I found your story to be amazing, and I truly admire all that you are doing. I'm a first year medical student, and I'm horrified at the experiences you have had in the past with different physicians... but not entirely surprised. Many of the doctors I have worked with have been caring, wonderful people; but unfortunately many others were not. My desire to become a physician is based purely on wanting to help people like Payton and yourselves, and reading his story has reminded me why I decided to come to medical school in the first place. We medical students need to be reminded that there is so much more to healing than studying textbooks, and I plan on emailing your website to my entire class, so that maybe your story will affect them the way it has affected me. Thank you so much, and God bless.
Reading your story makes me sorry to admit that not all doctors are created equal. As a medical student, I hope that I never become as jaded as some of your doctors were. Congratulations on Payton's success!
Best wishes, David
Hello everyone! How exciting to see future docs on Paytons' website!! Please know that while we have had some horrible experiences, the docs and nurses that DO care make up for the ones that don't, over and over again. ALL of Paytons' nurses now, are WONDERFUL, and Paytons' pediatrician, Dr. Leon and his asst. Lynn are on Paytons side and help us out all the time. Payton goes to see a pulmonologist in Palm Beach (the one that is 5 minutes from our home told me that he "didn't want to get in the middle of a 3-ring love triangle" (whatever that means) over Paytons hosp. bed in the PICU, while he was hooked up and intubated in January, because he found out from the intensivist there that I had gotten some advice from another pulmonologist) named Dr. Sallent, that is so good that he has just about every sma baby and child in Fla. traveling to see him. I had forgotten about the pulmonologist here until I started writing this. I think that with any job, you get burnt out people and people that don't care. Fortunately, not ALL docs are like this, no matter how long in the field....Thank goodness for the internet though...the intensivist that we had made a point to tell me and Rob in his "the buck stops here" voice NOT to get on the internet, and that it was filled with "quacks!" Well, if I had listened to him, Payton would never have made it this long. Unfortunately, I think that was the whole idea. I know he felt that he was doing what was "best" for Payton and probably had decent intentions, but Payton is not suffering...he is not in any pain...he is not neurologically impaired in the least, instead I'm told that sma children are usually of above average intelligence...he's happy.. and so are we that we have the time we have with him...it would have been alot more painful to lose him before we had to, just because we didn't have the information that the "quack" filled internet gave us...Anyway, sorry for rambling, but if you know me...you know that there is no other way!!LOL Thanks for visiting everyone! Payton sends his love and says goodnight!!!!!!!!!!!!!
I'm Julia Bracewell's classmate (USF Medical School). I'm sorry to hear you had such bad experiences with doctors. I'm glad to hear Susan is great (I'm a PT graduate from FIU myself). Above all, I'm glad that you took the time to share your story so that others don't take forgranted what they have. You're wonderful parents and I will definetily keep Payton in my prayers. God Bless!
I keep forgetting!! There is a huge rollerblading event in south beach from Feb.8-Feb.10 and all the money raised goes to FSMA. This event lasts all weekend with tons of fun and prizes and skating! They are raising this money on behalf of Ryan Nolan and we support this event 100% !!!Ryan and Jamie are getting married on February 8th, so we will not be there Friday but we will be there all day Saturday. They have a HUGE police escort from Miami to Key biscayne. If anyone is interested, the web address is www.skate-events.com. If you have any questions please ask me and if you would like to volunteer or know anyone that would, let me know! Thanks alot! We love you all! Rob, Deb and Payton
I am a medical student and I am horrified at how you were treated by healthcare professionals. Payton is a beautiful child and he certainly deserves the best of care. I hope that something miraculous happens for you and for Payton.
Hi Payton! Your G-ma Roz called me the other day and told me all about this site. It is amazing-I learned so much about SMA. You are a beautiful boy. Mommy, Daddy and You are always in my thoughts and prayers. I am going to send the site to your aunt Darlene. Take care sweet boy love, Aunt Diane
hi payton, hope your having a great night......wanted to say i love you and soon i will see you.....deb, i got the # , thanks. did you mail the video? i love your daddy and mommy too payton, you are a very lucky little boy as they love you more than life itsself..........you are life, we are so close...hang on little bud! g-ma roz
Hi Payton, I'm at work and I was thinking about you so I just want to say hi and have a good day and I will see you later. We'll play a little and maybe watch a movie, okay? Love you lots, Grandma
Hey there little guy,
Sure am gald that I can keep in touch with you this way. I would never want you to think I forgot about you. I just wanted to say Hello and let you know I love you very much. Be strong.
Love, Aunt Holli
Hello out there!! Payton slept so GREAT last night! He is sleeping so great lately! I'm very happy about this. Yesterday morning, I woke up to the pulse ox beeping and when I went in Paytons' room his sats were VERY low, lower than I had seen them. I checked the bi-pap hose first, it was hooked up fine. Then I immediately brought him downstairs and started to in-exsufflate (make him cough and clear his airway). He was cleared almost immediately and was fine after that... This is not uncommon, Payton getting a mucus plug that he can't push out himself. But it is uncommon for him to get one while he is on the bi-pap that makes him desat and start to turn gray. He was pushing a bowel movement at the same time so I thought maybe the combination of pushing plus the plug made it impossible for him to recover if he lost his breath....But for those of you that are sma parents, we had forgotten to make him cough the night before (Payton coughs 3x a day-once in the morning, once in the afternoon, once before he goes to bed--by once, I mean the whole round of coughing that we do with him),so the lesson learned here is to never forget the coughing!! It is soooooooooo important to cough!!!!!! I know that it was a combination of a couple of things, but to see him desat while ON the bi-pap was something I'd never seen, and do NOT want to see again! Roz, I thought that Rob sent the video??? If not, I'll make sure it goes out!!!!! Payton is going to see Ryan this weekend at the Nolans' Christmas party. Ryan told Regina that he will make ALL the kids that come over, CRY, except for Payton. He likes Payton!!aawwwwwwwwwww Anyway, take care everyone and have a great day!
Dear Freeman Family, I must say I am so glad that there are people like you in the world who will fight for someone they love no matter what the odds. You are an inspiration to everyone who knows of you story. I know you have inspired me to become a better doctor so my patients do not have to deal with the treatment you received. Again, that you for following your hearts and showing the rest of us that anything is possible. You are all in my prayers. Sincerely, Amy Johnson
Hello Freeman's, (ESPECIALLY Payton) I wanted to say a quick hello and tell you that I am ALWAYS thinking about ALL OF YOU. Debbie Deb, your comments are my absolute favorite, b/c they keep me up-to-date with everything that is going on!! It's just like talking to you on the phone, minus all the call-waiting's we must endure! Ha Ha :-) Anyway, many hugs & kisses!! XOXO Marn
My prayers are with you and your family. Happy Holidays!
Hi Freemans! Just wanted to tell Payton that I love his website...he is like a famous person now! I also want to wish you all the best during the holidays and always. I hope that 2002 is filled with only things that make you happy. You are all always on my mind and in my heart. I love you. XOXOXOX -Renay
Hi Payton..we just wanted to say that we think about you everyday and we love you sooooo much. We are so glad your parents love you so much and we know they would move the earth for you!!! Hi Rob and Debbie, you guys are doing such a great job on this site!!! We are proud of you both for being so strong...we will support you guys in everyway we can!! Ryan and I love you guys from the bottom of our hearts and we are so lucky to be apart of YOUR family!!! We love you!!! Hi Debbie and Bob! Ps..Trinity say's Hi and she misses Grunt and Gage soooooooooo much!!!!!!!!!!! <3 <3 <3
Glad your son is still with us! I am Brooke Binning's grandmother. She will be 4 in June 2002. she is not on g-tube, or anything else. But has been sick often the first 2 years of her life. You can read her story under SMA kids. she is very thin but still eats by mouth, laying flat on her back! As the doctors told you, they told us - guess what 3 1/2 is a long time when you are told she won't make it a year! May God bless you. Pam
Hi Payton, I'm Renay Green's Aunt Mich. She talks about you, Mommy & Daddy since the day you were born. She couldn't love you anymore if you were her own flesh and blood. I'm so happy that she sent me your website so I could see what you're really like... AND you're everything she said you are and more. I wish you and your whole family a HEALTHY AND HAPPY NEW YEAR. Love, Mich
Payton, I miss you! I look forward to seeing you very soon! Love you tons, XOXO, Jennifer
Dear Payton, Rob, & Debbie
Tammy gave me the web site address and I read your story. I was totally unaware of what those awful people in the hospital did. I can hardly believe it,with such a beautiful child and I guess they don't realize that you are at your lowest point in your life, and need strength and encourgement.. I think you are the bravest people I know. Tammy is close to Rob, because she works for him, and she see's the toll it has on him, I can't imagine how they do it, but keep up the good work. I have known Rob for years , he has been very good to my daughter Tammy, giving her a job after she was divorced and had to go back to work and put her son in day care. Thank You Rob.... I pray for a cure. Take care Rob , Debbie,&Payton, and if there is anything we can do just let us know. I love the Buzz Lightyear Payton is lucky to have such great parents. Merry Christmas....Diane and Tammy
Hello,Hello,Hello! Thankyou soooooooo much for all the nice comments everyone! It sure is nice!! A friend of ours was watching us with Payton once and after seeing the bi-pap and how much we actually have to use it,etc..., they asked,"do you ever just want to give up?" And we looked at each other, with that quizzical look, and said "no, never." We may get frustrated, angry with disease, upset, but anyone who has a child would understand that they are your #1 priority in life and if he isn't happy or o.k. then we aren't. I don't think anyone realizes when preparing to have children, just overwhelming it is, but it's the truth...and WHATEVER they need, they get... We are taking Payton to see the lights again at Tradewinds tonight! He loves this, so we try to go as much as we can! Also, through the help of speech therapy and our 2 wonderful therapists, Eileen and Denise, Payton is actually starting to lift the corners of his mouth when he tries to smile!!!!! This is very exciting and daddy spends plenty of time getting him to do it! Well, take care everyone and thanks for reading!!!!!
Dear Debbie,Payton,Rob,and Freeman family, Just wanted to tell you how touching your story was. Debbie, you are always so loving, caring, and concerned for everyone at work, I never really imagined what a full plate you had outside of work. It sounds like you have a very supportive, and caring husband - that really makes a difference. I don't understand all of the things that this cruel world has to offer, especially to many innocent children - it seems as though they really never have a chance - although for many of them this is all they know, and with all the love they receive, they are happier than anyone of us that take so many things for granted. I do know one thing though, and it is that God promised two things-1) He would not always deliver us from pain, but he would walk the tough walk ahead of us. He knew Payton before he was born, he knows Payton's future, and he has a purpose and a meaning for his life. He has made your family seem very strong, and you value every moment you all have - that is very important and so many of us forget to tell the ones we love just how important they really are, although I don't believe that you ever had this difficulty. This is just your nature. God never gives someone a situation that he doesn't have the grace to cover it with. He knows you and Rob are a very strong team, I believe that is why he chose you. He knows you are filled with so much love and you are not a quitter! He needs someone strong to help find a cure for all of the other individuals suffering out there! 2) He promised that what ever you ask of him, if you believe with a pure heart that he can answer and provide he will - he holds nothing back. He works miracles every day, and has worked many for me, someday when we have time I will tell you! But I do want to let you know that I will be praying, and many others will be I see as well, for a miracle for your angel Payton, and I do believe he will answer - he always has! It has been a blessing to have met you and make you a very special part of my life, and anything I can do to help, please let me know. I would love to help with any fundraisers. Look forward to seeing you next time at work (I'll try my hardest to be on time!)ha,ha. God Bless! All my love always, Cassandra xoxoxo P.S. What a beautiful baby you have been blessed with. He picked up on all of the best features of you and Rob. What a hunk he is going to be!
hi little bud, sure hope you night went well, did you enjoy the lights? i love the lights too, they are so pretty......hey my handsome boy i want to tell you i love you and your mommy and daddy also.....have a good day!!!! g-ma roz and bill p.s.tell daddy cookies will be on the way soon....
Hi out there! Well, we didn't get to see the lights last night..Payton slept through our window of opportunity! But we will go next week, and I think grandma and grandpa may come too! Payton has become a veggie tales addict! I think he likes it more than, dare I say, TOY STORY!! Maybe he is just taking a break from Toy Story! I imagine even the obsessed Toy Story fan needs a break from Woody and Buzz once in a while! Payton tries sooooooooo hard to talk to us, I am really hoping that we can get "uh-huh" and "uh-uh" soon! I know that Ryan talks, but I am not sure when he actually started communicating words. Well, tonight is Ryans' x-mas party, we are looking forward to seeing the Nolans! I think that Ryan loves to see Payton because he is just like him! He sort of wants to look out for him! How cute! It is great to hear from you Cassandra, Brooke, Jenn H., Jackie, and my friends from Outback! I have been there so long, that people of Outback are like a second family to me and have been for a long time. And when things started to get tough for me, every single Outbacker has been there for me when I needed...How many people can say that about their job? Their peers at work? Their employer????? Well, I am very proud to say that I can! I love the Outback, the way it is run, the people that run it, and their employees and they have shown to me and my family that they DO care about their employees, unlike alot of other companies, I'm sure... Love to you all!
hey guys, well payton,i'm sorry to report that the dolphins lost today=( don't worry we'll get em'next week right. well just wanted to check in an see how your seekend was. tell mommy i'll be seeing her on wednesday if she's keying, tell daddy i said hi too. i also look forward to our "movie date" some time very soon. love you bunches xoxoxo jax
hi there little bud its your pesty g-ma roz.....just wanted to see if you had a good time at the party and how the lights were...i love you.... good night sleep tight..........love you too rob and deb..............
Hello!!!!!The site is back up! Yeaaa! I got so used to writing every day that I felt a void for those few days! Well, the party at the Nolans was great! We had a great time and Payton did too! He watched his veggie tales and was bright eyed most of the night. He got a little stressed when the noise level got too high, but destressed with the veggie tales. Ryan was so cute in his little ralph lauren outfit. He looked just like his dad.:-) We had 2 pt appt.s this weekend and Payton did great. He gets a little upset when his feet and legs are stretched out because they are getting tight, but we know it is good for him and try to do it often now. He fell asleep today on his belly and he looked so cute...in his dolphin shirt. Usually when he wears it, they win, so I'm not sure what to do now!:-) Sorry Grandpa. Anyway, hope everyone is doing well!!!!!!!!Love from the Freemans!
HELLO!! I am soooo glad that the site is up again! Deb, I missed "talking" to you & "hearing" all about Payton! Anyway, glad to hear that Ryan's party was fun. Will speak to you soon... Kisses to you all XOXO Love, Marni
DEAR PAYTON,
PLEASE TELL YOUR PARENTS THANK YOU FOR THE INVITATION TO VIEW YOU SITE, IT IS AMAZING AND SO ARE YOUR PARENTS. (WHAT A GREAT WAY TO COMMUNICATE AND KEEP EVERYONE UPDATED)I AM SO GLAD THAT YOU ARE SURROUNDED WITH SO MUCH LOVE AND SUPPORT!!
IT WAS GREAT TO SEE YOUR PICTURES, I CAN'T BELEIVE HOW BIG YOU ARE GETTING! I AM SO GLAD THAT YOU HAVE NOT HAD TO FREQUENT THE HOSPITAL LATELY, KEEP UP THE GOOD WORK (trooper)!
WELL I MUST GO, I HOPE SANTA BRINGS YOU LOTS OF GOODIES AND MAY THE NEW YEAR BRING A CURE TO SAVE YOUR PRECIOUS LIFE.
HAPPY HOLIDAYS! LORI, JIMMY AND HAYDEN JAMES
ROB,DEB,AND PAYTON,
THIS IS PRETTY AMAZING! I LOVE THE TOY STORY THEME. TAYLOR AND I JUST GOT BACK FROM DISNEY OVER THE WEEKEND, AND AFTER SEEING THIS WEBSITE, I KNOW YOUR GOING TO LOVE YOUR PRESENT! I WOULD LOVE TO HELP WITH THE EVENT AGAIN, JUST LET ME KNOW WHAT YOU WANT ME TO DO. IM GLAD PAYTON GOT OVER HIS POOPY PROBLEM.THAT CAN BE A REAL NIGHTMARE. I WANT YOU GUYS TO KNOW THAT I WILL ALWAYS BE HERE FOR YOU -NO MATTER WHAT. WELL TAKE CARE, I LOVE YOU GUYS, AND HAVE A GOOD NIGHT!
LOVE ALWAYS, MARY TAY-TAY, & PEDER
Hi Payton,
I am a friend of your aunt, Jamie. You are a beautiful little boy!!! I wish you & your parents the best.
Love, Ana
Hello out there! We have been really busy with the holidays, so I haven't been able to write in a couple of days! I'm sure you all know how it feels!! We finally got our tree up, and I must say that we are so thrilled with it. Out of convenience, we bought our first fake tree(pre-lit!) and it is awesome! The lights are better than anything I could have done, all strategically placed. The branches are all perfectly spaced and it LOOKS real. Rob set it up in about 6 minutes and I added the ornaments and that was it. AND we can use it NEXT year! For those of you that love the real ones, I admit that it doesn't have the x-mas tree smell, but that is the only thing lacking!!!!!!!!!!! Anyway, Payton had a great day. Speech has been progressing really well. Payton is choosing his toys now with eye-gaze and is talking up a storm! He has SO much to say (wonder where he gets that from!) and we can't wait to be able to understand it ALL!
I want to share something with all of you...We went to UofM on Monday to get our carrier test results...me, Rob, Robs' brother (Ryan) and my mother. For those of you who don't know, if you have one parent that is a carrier, than you have a 50/50 chance of being a carrier. Those were Ryans odds. We knew that with me being a carrier, that at least one of my parents was a carrier, so my mom was tested first....We were not surprised to find out that Rob and I both showed the necessary gene deletion to be a carrier of sma...However, we did not expect to find out that my mom and Ryan are BOTH carriers of the gene deletion for sma. The reason that I am sharing this with you, is so that you better understand that Payton is NOT an isolated case. 1 in 40 PEOPLE ARE CARRIERS OF THIS DISEASE. If you have a baby with someone that is a carrier,you have a 1 in 4 chance of having an unaffected child. You have a 2 in 4 chance of having a carrier, and you have a 1 in 4 chance of having an affected child, like Payton! I want the world to know just how often this happens!!!!!I shared this because I want to raise awareness levels, but my main reason is to let our FAMILY know that this is a reality, and that they need to be tested if they ever plan on having children, or if their children ever plan on having children, etc...10 years ago, Payton could have had sma and there would have been no way to test for carriers or even diagnose sma with a blood test. TODAY THEY CAN. Take advantage of technology, and please, out of respect for us and for Payton, get tested, and do not let this happen to another baby in our family again. Thankyou We love you all...........
I just remembered this morning...My brother and his wife found out that they were having a baby just a few weeks after Payton was diagnosed in late '2000. Bob was tested right away and his results came back positive. He too is a CARRIER of sma. FOrtunately, his wifes' test came back negative....But Briannah may be a carrier and one day she too will be tested to protect her children, and her childrens' children, etc...
Hello Freeman Family! I want you to know that I am SINCERELY GRATEFUL to learn JUST how important it is to get tested for the carrier gene PRIOR to having children. If it had not been for you (Payton) I would never have known what SMA is or to ever get tested. I am sure that many people are much more aware now & will get tested. I love you & think about you EVERYDAY! Deb, I will see you tomorrow. Tell Payton I am looking forward to seeing him! :-) LYB, Marn
HEY PAYTON, JUST WANTED TO SAY HI AND SEE IF YOU LIKED YOUR X-MAS PRESENT.YOUR MOMMY WILL BE BRINGING IT TO YOU TONIGHT.I CAN ONLY WRITE REAL QUICK--IM GOING TO THE BRITNEY SPEARS CONCERT TONIGHT.IF YOUR NOT SURE WHO SHE IS,ILL BRING OVER THE DVD AND YOU CAN LET ME KNOW WHAT YOU THINK?WELL IM HAPPY YOUR GABBING LIKE YOUR MOMMY,HAVE A GOOD NIGHT,& I LOVE YA GUYS! MARY
HEY PAYTON, JUST WANTED TO SAY HI AND SEE IF YOU LIKED YOUR X-MAS PRESENT.YOUR MOMMY WILL BE BRINGING IT TO YOU TONIGHT.I CAN ONLY WRITE REAL QUICK--IM GOING TO THE BRITNEY SPEARS CONCERT TONIGHT.IF YOUR NOT SURE WHO SHE IS,ILL BRING OVER THE DVD AND YOU CAN LET ME KNOW WHAT YOU THINK?WELL IM HAPPY YOUR GABBING LIKE YOUR MOMMY,HAVE A GOOD NIGHT,& I LOVE YA GUYS! MARY
I hope the Britney concert was good! Ya know that Marni was going too! Maybe you will see each other there! Ha! It is late and I just got home from work a little while ago. Outback is soooooo busy! GC sales are crazy!!
Payton was 1/2 asleep when I got home but feeling much better than when I went to work! His belly was soooo bloated from gas. Poor baby! It makes it so difficult for him, because he uses his belly to breathe! But he is asleep now and he looks like a perfect little angel, which he is.:-)
I will soon start selling the sma benefit rose pins. If anyone is interested, just let me know and I will send you one. They are $10. Also, if anyone wants to volunteer at the "Great Eskate" in Miami, the # to call is 954-262-1270 and ask for Marianne. She is in charge of the details. THe event runs from Thurs. to Sun. We will only be there on Sat. (Ryan and Jamie will be married on Fri. :-) ) but if anyone wants to come with us, just let me know. Payton will not be coming, but hopefully he will be at our dinner benefit!!Hugs to everyone..
I'm sorry...I made it sound like the event is THIS weekend! IT IS NOT. The "Great Eskate" runs from Feb. 8th to Feb. 10th! Thanks for all of your help!!
Also, Rob said that I was confusing when talking about passing the carrier gene, so let me try again...
1 in 40 people are carriers...
If you are a carrier, and you have a baby with another carrier, these are your odds..
1 in 4 chance of having a completely unaffected (by sma) child 2 in 4 chance of having a carrier(like Rob and I) 1 in 4 chance of having an affected child (like Payton)
If you are a carrier, and you have a baby with another carrier...
2 in 4 chance of having an unaffected child 2 in 4 chance of having a carrier.
More info later..........:-)
I know that this is INCONCEIVABLE, but I screwed up AGAIN!!!!!!!!!!!!
The odds that read:
2 in 4 unaffected child
2 in 4 carrier
are when a CARRIER has a baby with someone that is NOT a CARRIER!
The rest was correct, believe it or not...I am very tired, I must go to sleep now:-)
HI PAYTON,DEBBIE AND ROB THANKYOU FOR LETTING ME VISIT YOUR WEB SIGHT. I HAVE ENJOYED READING YOUR STORY AND LOVE THE PICTURES. I KEEP A PICTURE IN MY DRAW AT WORK. I LOOK FORWARD TO MEETING YOU IN PERSON PAYTON HOPEFULLY TOMARROW. :) LUV CINDI W/ FIRSTAT NURSING
Another crazy day! It seems impossible to catch up sometimes. I am just going to have to stay up later and later!:-)
I have a lot of people ask "how do you do it?" and "how do you stay positive?" My doctor told me that I seem very unstressed for my situation....I would like to share my secret....It is my mother. I know that mothers never get the credit they deserve, so in the spirit of the holidays and me wanting to thank her in a bigger way, I would like to share with you, just HOW MUCH she really helps....My mother comes over my house EVERYDAY after work. EVERYDAY. I go do any errands I have or go for a jog or clean the house, whatever I need to do and she tends to Payton during this time. This is for at least an hour, usually longer as there are many times that Rob and I have to go do something or we need to shop or whatever. Then she stays here on the weekend to babysit while we work, and if we want to get out on a weekend night for dinner or a movie, she watches Payton...You must understand that watching Payton is not your typical babysitting job.........No No No......This is something that only an experienced nurse would tackle. Those of you that have spent time with us, know that we don't let anyone watch Payton except my mother. We are very lucky to have her and so is Payton. She does not get frustrated or irritated with him. She plays with him like a grand mother and takes care of him like a nurse!!If it was not for my mother, I would probably feel trapped in my home, and I am sure that that frustration would get taken out on Rob. She prevents us from having THAT problem. So, I want to say, and I speak for Rob too, that I love my mom and I don't know how she does it or how she stays positive, but she does and I guess that's just what moms do! We love you! Payton, Rob and your favorite (just kidding!) Debbie :-) Goodnight to all!!!!!!!!!!!!
at times life is wicked and i just cant see the light,a silver lining sometimes isn't enough to make some wrongs seem right. whatever life brings, i've seen everything,and now i'm on my knees again. but i know i must go on, although i hurt i must be strong, because inside i know that many feel this way. children dont stop dancing,believe you can fly away...away.at times life's unfair and you know its plain to see. hey god i know im just a dot in this world have you forgot about me? whatever life brings, i've been through everything and know im on my knees again. but i know i must go on, although i hurt i must be strong because inside i know that many feel this way. am i hiding in the shadows? forget the pain and forget the sorrows. but i know i must go on although i hurt i must be strong because inside i know that many feel this way. children dont stop dancing, believe you can fly, away...away.am i hiding in the shadows? are we hiding in the shadows? HAPPY HOLIDAYS EVERYONE. Payton daddy loves you so much. how much? too much and all the much in the world! Deb i love you very much as well and your ( our ) mom and dad.
Payton, Hey little buddy, hope you're doing good. Getting excited for Santa's visit soon I'm sure. I was at Disney last weekend and I spoke to Woody and Buzz. They asked me to say Hello and wish you well. They also asked me to give you a big hug so when you read this tell mommy to give it to you. Well I like your website and I'm looking forward to your next big shindig. It just so happens that I bought a signed Hurricane football last year and you brought them a whole lot of good carma. I may have to buy a ball every year just to keep the good luck you bring up. Alright bud you go have a good christmas and lets get into the new year. Take care give your Mom and Dad some love from Taylor, Mary and Me. See you soon. Peder
Hello there Debbie, Rob & Payton.It's taken me a while to muster up the courage to visit your website.I've seen pictures of Payton in the office at Outback but just the other day Debbie showed me some recent photos & I listened to her speak about Payton & Sma (in her calm & so matter of factly sort of way) & working w/Debbie & honestly feeling that she was a friend I found that I needed to find out about Payton & Sma so I signed onto the site. And have actually been on it about 4 times today reading & trying to understand more & well here I am again.I cried & my heart actually ached. I can't even begin to imagine this in my life - I don't know if I would be strong enough. Debbie you are absolutely amazing. I had no idea of the "Double Life" you lead. You're always so upbeat,caring & so put together....I now look at you in a different light...not just as a friend & co-worker but w/admiration & TOTAL respect. Payton is one very lucky little guy to have such a wonderful mother(& father too from the entries I've read in your journals). I spent hours today looking on the web to find out even more about Sma, I spoke w/my two daughters about Payton & showed them his pictures. I can't seem to get this out of my head & couldn't wait to come home from daily errands to look some more. I am more than willing to help out w/your benefits..please just let me know the details.Debbie if you could please let me know the exact name of that Hi-Low chair the insurance company wouldn't approve.I feel that one way or another we will get that for Payton (pardon my french but...) "Screw The Insurance Company"... Have a wonderful Christmas and may this New Year bring you nothing but what you deserve...THE VERY BEST!!! My thoughts are w/you Luv, Shan xoxo
Hi Payton, Debbie and Rob,
Payton you are definitly the cutest! You have two really amazing parents. You hang in there, and keep fighting. You are a very strong little man. I know how those doc's can be. I was in the hospital every two weeks for three years for chemotherapy treatments and some of the nurses and docs do not know how scary hospitals and doctors offices can be for kids, Especially when there is needles involved. Just hang in there. See you at work Debbie! You will always be in my heart and in my prayers.
Love always Jen xoxoxox PS email me anytime :p
Such a busy day!!!!!!!!! First, I want to say HAPPY BIRTHDAY to my favorite mother-in-law!! I am sorry that we could not spend it with you but I am sure Bill took you out for a special night!!You are a wonderful mother-in-law and mother and grandmother and we miss you!!!!!!!
Mary, I can't go on enough about the "monsters" disney blanket. You are always so generous and you are such a good gift-giver!! Your gifts are always so personal and thoughtful! Oh, and I love the Disney frame-you are so great to always be thinking of Payton whereever you are:-) Hope Taylor likes her clothes! I will see you at our key meeting-Hi Pedder!!
Cindy, thankyou so much for the gifts...we will open them on Christmas!And thankyou for visiting us and Payton! It was great to finally meet you!
Marni, Thankyou for "the Tape" You are the ABSOLUTE best! Payton said your visit went well, but that your little red device kept ringing??? What could that be??JK We love you...
Shannon, I would love to say that my demeanor at work was this well thought strategic thing, but it really isn't...I have NEVER brought my personal stuff to work EVER, I know you are the same. Work is work and that's it. I am lucky because while I am AT work, Payton is with my mom and I trust her with him so I don't worry...Not to mention, it is a good distraction and gets me OUT OF THE HOUSE!! If I could, I'd work a lot more but I really can't...I am lucky that I can work the days that I do....I really appreciate the nice comments though... It makes me feel good when people care and care enough to look into the disease and go that extra mile...There is so much crap in this world and we all have problems, so I never expected people to react like they have. SOOOOOOOOO many people REALLY care, really care about Payton, for real, and they want to help, not just donate, but give of their time and volunteer and there is nothing more valuable than that. So I want you to know, ALL of you, that someday, in some other life...we owe you BIG!:-) Love to you all! The Freemans
P.S. Also, about the hi-low chair--I am actually in the middle of a fight with the insurance co. to get it. If I get denied again, I will definitely let you know, but I know that somehow he will get that chair!!!!!!!! Thanks for writing everyone! You too Jen!
Speaking of work, I just want to say a quick thankyou to people like Shannon and Mary and Jenn and the Kellys and Lori-my boss and Kirsten etc etc etc etc for always treating me normal and not like the "sick babys mom." You guys are all very real and honest and when you want to know something you ask and it is never a big production or anything. I appreciate it more than you can imagine, because as much as we know this not the norm, we try not to be isolated from our friends and work and just the world, ya know???Thanks!!!!!!
Debbie, I will call you this weekend; Christmas eve is Monday and I want to give Payton his presents early since the holidays are so hectic! I hope he likes what I got him and that no one else bought it for him yet! I also have something for Payton, you and Rob. I know you all will be busy too this next week but I'd like to come by and see you all! Also, I'd love to see the wedding video! Your Mom is amazing; I'm so glad you have her to help you out! Also Deb, I would love to help out with the rollerblading (Eskate) event in Miami in February, probably on Saturday. Count me in for any fundraising activities to help raise money for SMA research. Payton, you are the cutest, you get more handsome every day! I love showing your pictures to everyone! Deb, also thank you for being such a great friend! I love you all bunches! XOXO, Jennifer
Payton, Do you have " How th Grinch stole Christmas" on DVD? I wanted to get it for you but I wasn't sure if you had it yet?! It is on of my favorites along with Shrek. Maybe we can watch it together sometime! I love you so much, I think about you always! XOXO, Jennifer
Hey baby Payton, my favorite beautiful nephew in the world! I see your mommy is still very active and wonderful and spreading the word about you, and doing everything humanly and superhumanly possible for you and for other little babies with sma! I just want you to know that people in France, Ireland, and Romania (all far-far away places!) have all come to your site (even people from Arkansas have come! And THAT'S a VERY far-far away place!) and read about you, and all send you their love, whether they wrote in your journal or not. This makes you an international super-star, Payton-baby! You're hot property! You're wowin' 'em in twenty different time zones! I hope fame doesn't go to your head: many child stars fall prey to this glamour and glitz, but I know you're more down to earth than all that, and you've got such good parents to keep your feet on the ground. Remember that even though it's good to keep your eyes on the stars, it's best to keep your head out of the clouds. Love and Hugs and Kisses, your favorite aunt, Amy
Merry Christmas Payton. I love your pictures. You are my first and beautiful great-grandchild.
Debbie and Rob, Your parenting should go in textbooks. You're the best. Love, Mom-Mom
Hello hello! I have not written in a while, although, I do visit the site EVERY SINGLE DAY!! Sweet Payton-it was WONDERFUL seeing you last night-especially because your daddy was not around to give me a hard time(Ha ha JK ROB-you know I love you) Deb, call me I can't wait to hear what you thought!!! You looked so happy & content with Grandma! Well, I just wanted to say hello & tell you that I love you & am thinking of you...ALWAYS! LYB, Marni
Hi Payton: I got your Christmas card today and I was so happy to hear from you....and I love your picture - you have made the fridge once again. Please tell your mom that I know she is busy, but I miss her voice! I need to arrange a date with you, so tell her to give me a call. If I do not see you before Christmas I hope you have a very merry one! Smooches to mo