Where in the World did the Naults Go?!?!

Must have seemed like we fell off the map for a long while to some of our folks who check this blog. Well here's the scoop. We up and scooted off to the wonderful state of Washington. It's a damn sure long way from the hell pit of Texas we were eager to leave.
And WOW the adventures we had, we took a minute detour in Las Cruces NM, which was the very picture of the southwest at its loveliest, then up to Pheonix AZ. There we stayed with my aunt Marilyn who was a totally awesome and gracious host. We discovered rockhounding and stumbling upon cactuses of every variety. I met up with Rebecca, a friend whom I've known since the 5th grade, and for a military brat to maintain a friendship that enduring is a feat and you'd never suspect we missed a day in each others lives the way we got along so well after 17 years.
Then after we departed Pheonix, we were onto Las Vegas, FOR CHRISTMAS!!!! Well, we didn't strike it as rich as we imagined it to be. It's not the sort of place you take the kids to have a good time, but amazingly enough we did a little work before we left San Antonio to find a sitter for Bryson so mommy and daddy could have grown up fun in the casino. Alexis was so charming and got along great with Bean just hanging out in the hotel room while Travis and I went down stairs and had the date of our lives!!! I wish her the best with her pregnancy! She was so good to let us poor parents off the hook for a couple of hours. I mean lets not forget that Vegas is the ultimate escape for adults. There was a moment when we had to walk through a casino with BEAN to find a restroom, and it was like everyone was holding their breath as we walked by and stared us down, mentally screaming at us to get him out of there, because baby's are bad luck, but not our boy!! So we all ventured around the strip mostly in the car for a few days and there is definately the possibility for a return visit.
Then we turned our sites to San Francisco to hang out with my enchanting cousin Randy and her rand-bunxios family. I gotta say cuz, you sure got a handful of handsome men on your hands, and another hand to cradle that new baby?! Can't wait to find out what's on the way!!!
California is the most geographically invigorating state. Its sooo different from end to end that the drive through was INCREDIBLE!!! Hwy 101 is the scenic route to the top and there was no dull moment or lull in the journey upward. I must say I've fallen in love with the West coast the second we got on that road. Have you ever actually seen where the happy cows from the comercial live?!?! I have, and you could stamp a brand on my ass and happily I'd live where the happy cows do. Such landscape is worthy of a fresco painting in the Smithsonian.
On from there, we stayed the night at a beachside hotel in Crescent City CA. It was such a charming town, and just to back track a little we spent a little extra time there to check out the Redwood Sequoias. The heights of which you can only imagine because from the trunk, you cannot see the tip, you cant even fathom the ages of these fantastic trees. The stories those old trees do tell. I loved that part of our expedition the best!
But our destiny awaited us elsewhere, so we headed on, now no stopping for any other off-roadside attraction excursions. To Washington, where beauty and bravery sip coffee at the same corner shop cafe. We got into town just in time to start our new year and new lives. Most days are rather grey as winters usually are, some snow which is even peculiar for the locals, and some days the sun breaks through and shines heavenly light on this marvelous place. The view of Mt. Rainer is unmistakable as it looms in the background, the lay of the land is truely evergreen.
I'm smitten with our new home. We got a gorgeous huge duplex, bigger than I thought our paygrade could handle, but for the sake of Bryson's needs, this home is very accomodating. We're still in the midst of unpacking again for the 5th time in 3 years. Now that's a breakneck pace!! We all took sick a few times during our odd-i-see due to the stress of gypsy life, but now things are working their way back to normalization, but for those of you who know our circumstances well enough can say confidently that we're still pretty far from that.
And so the journey for the Naults turns another chapter......

The unconquerable Mr. BEAN

Well every one, this is a new and exciting update from BEAN's ever-lovin momma. We are still in the heat of summer down in the hell pit of Texas. The A/C has been broken in the car for a few months now, so we've been mostly grounded to the confines of our chilly house for the entire season. Not that I'm complaining, the traffic here is more bumper cars than bumper to bumper. I still have a ways to go on car payments but the wear on the car says its more upside down than what its worth. I know some of you are devote readers who check in here to know the buzz on us than to give a call. I haven't always got a moment to sit and illustrate the life and times of the Naults, because Mr. BEAN, my boss, hasn't the patience to understand that I need time for myself. I have the time right now because he is enjoying his morning nap. I love it when you call me, I can juggle a phone, a child, and a few chores at the same time, but sitting isn't a luxury I have for long.

But in other developing stories I have to report, Bryson calls me by my name now. He knows his momma can come quicker when she is properly addressed, and in the right tone!! He is practicing his Dad words but for a kid who's had so many oral issues that's a tough one to say. We get the idea of when he's saying dadda by the hint of playful growl he babbles when he wants dad to scoop him up and throw him around. My momma word comes with a hint of whine and longing for a cuddle buddy. He is also sitting well on his own and can do a somersault all by himself. We think it's too hard right now for his mind to coordinate crawling, but with all his strength, will, and stubbornness, it's just a matter of time and for it to be his idea. We've been working with his therapists for a whole year to get him to crawl, but Bryson's in charge of what he will and will not do. He's a lot like his Dad in that regard, when he's good and ready he has the skills to do what he wants, but it can be frustrating waiting for that time to come.

For those of you that remember that glorious night at the pier, Our 3rd wedding anniversary is coming up next Wednesday on the 3rd. It would have been nice to make something special of the day, but it feels like 30 years instead of 3rd. We (Travis and I) are likely going to stay in and comfort Bean because on the 2nd he will have some major dental work done.

Bryson has an early AM appointment to be sedated for dental cleaning X-rays and fillings for a lot of cavities and even possibly a tooth extraction. Unfortunately, his teeth are really bad and the problems are exacerbated by lack of pediatric dentists at the military hospital, being directed every which way to dentists who refer us to other DDS's, and well we've spoiled the sugar baby rotten. The fact that his has a slight refluxing issue may also be a factor as well as maybe his teeth aren't as strong as they could be if he didn't make crazy weird cells with the Trisomy 13 code in every single particle.

It's so hard to judge what's normal stuff and what Trisomy 13 has got to do with what happens with our little guy. I cant bring myself to look at him as a kid with a syndrome, he just feels so normal to me. I wouldn't have a clue what being with a "normal" child might be like, because I don't have any experience with "normal". I never really have...... Bryson is just the way he should be and maybe even better than that, he has exceeded every expectation Travis and I were able to imagine for him, with the trisomy diagnosis. We couldn't have guessed any part of our lives would have taken us where we are today or where we'll be even tomorrow. He's got his moments of genius, where Travis and I are both stunned at how capable he is, given his abilities and setbacks. Some days we swear he's made a bunch of suckers of us when he shows he's outsmarted and manipulated us again for giving into his master plan for familial domination. It's hard to say no to a kid that makes you so sure you ought to say yes we can and will make this family life great. As adorable and cute as he is right now, it's too hard to resist his charms!!!

No Hands Guitar Player

People can be so completly amazing when you think there isnt much they are able to do, they can do almost anything better than you!!

I am the Child

Author unknown

I am the child who cannot talk.

You often pity me: O see it in your eyes.
You wonder how much I am aware of .... I see that as well.
I am aware of much.... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated,
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.
I do not give you rewards as defined by the world's standards.... great strides in developments that you can credit yourself;
I do not give you understanding as you know it,
What I give you is so much more valuable..... I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.
I am the child who cannot talk.


I am the child who cannot walk.
The world sometimes seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again.

I am dependent on you in these ways.
My gift to you is to make you aware of your fortune our healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me, I always notice them.
I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn as easily, if you judge me by the world's measuring stick.
What I do know is the infinite joy in the simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. if you allow me, I will teach you what is really important in life.
I will give you and teach unconditional love.
I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness.

I teach you about how very precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you about giving.
Most of all I teach you hope and faith.
I am the disabled child.

Happy Second Birthday Bryson!

Bryson celebrated his Second Birthday with family & friends in attendance.

Harriet McBryde Johnson

Harriet McBryde Johnson, a local attorney and Civil Rights Activist on the rights of the Disabled died at the age of 50, yesterday here in Charleston. It is a very sad day for the people she represented and for many millions she hoped to bring awareness to the issues confronting the disabled. She was a champion for the ADA and equal access to healthcare. She debated Peter Singer, Professor of Bioethics at Princeton University. Singer professes to his young students (often first year medical students) that babies born with disabilities should be euthanized at birth because they will make no contribution to society. Ms. McBryde Johnson you see, was born with a congenital neuromuscular disease. Her thoughts on the Terri Schiavo case were that Terri was not at the end of her life and was not dependent on life support, no ventilators, etc. She (Terri) was indeed disabled in a persistant vegetative state was only tube fed. A husband to someone that is not disabled would not be allowed to withdraw tube feeding and hydration, so why was Mr. Schiavo's request carried out? Simply based on something Terri said years and years before? Terri had no written advance directive and she survived with loving family at her side for 15 years! http://www.slate.com/id/2115208/

Ms. Johnson had a disdain for the pity-based tactics used by the annual MDA Telethons, which I do too! You may actually raise more funds when you show the world the wonderful accomplishments people with disabilities can make. Like those of Harriet McBryde Johnson. Most of all, the lesson we can all learn from her is that we "typical" people, need a little more humility and humanity.

Harriet was also an author and has written: "Accidents of Nature", "Too Late to Die Young: Nearly True Tales from a Life", "Unspeakable Conversations" (http://community-2.webtv.net/@HH!80!A2!2134BF518044/stigmanet/HarrietMcByrde/)

RIP Harriet

Second Birthday!

Bryson will be celebrating his second Birthday on June 9th. Mark & I (Grandma & Grandpa) will be going to San Antonio for this big day. I am so looking forward to seeing him again. I will post more with photos later.

Update on Bryson

Bryson gave us quite a scare on May 14th. He was eating and aspirated some food and stopped breathing and his heart had stopped. Travis did the Heimlich on him to remove the food substances from his airways and did CPR. He was not responsive for a couple of minutes (must have seemed like an eternity) he finally came back around, breathing and heartbeat restored. He is fine now no apparent damage and is back to his same self again. We are all breathing a little easier, however, this just goes to show how delicate Bryson's situation can be.

Bryson comes to South Carolina

Bryson & Dana came to South Carolina for a visit. This time of year our hometown has it's Azalea Festival. The festival draws 200,000, but also in the same weekend is Charleston's annual Cooper River Bridge Run, a 10K race and walk which this year had 37,000+ participants. We also went to the Cajun Festival in James Island which is great fun with Zydeco Music and great Cajun food. We had a lot of fun and Dana had a chance to catch up with some friends.

I was really sad to take them to the airport to return to San Antonio, but that's where they live for now and I'll be seeing them for Bryson's Second Birthday celebration in June. I'm looking forward to seeing how much he will have changed since this month.

Ironman brings awarenes to Trisomy 13/18

Michael Hennessey of San Antonio TX is going the extra mile to bring awareness to Trisomy 13 & 13. In fact there will be many many miles of running, biking and swimming involved. Micheal competes in Ironman Triathlons and plans to compete in 18 all over the globe during 2008. In each city where he competes, he plans to bring awareness to these rare chromosomal disorders. Please visit his blog at http://www.ironmanforkids.com/ Please donate to his cause as well. We need to get the word out about T13 & T18.

In Loving Memory...

On February 12th at 8:05 a.m. my Mother, Doris McDowell, Bryson's Great Grandmother died at the age of 88. She was a wonderful mother. And as a great Gramma, she loved Bryson with all her heart. Rest in Peace Mom...I love you always and forever.

Another Surgery Scheduled

Bryson is scheduled for surgery on February 7th. This time the surgery will be to repair his cleft palate and remove cataracts from his eye(s). I will again be traveling to San Antonio to be with the family as support. We are all hopeful that this surgery will allow two things. First the palate repair will help with feeding issues, speech, breathing, etc. The removal of the cataracts will hopefully allow him to have more vision than he currently has. This will be a Godsend as you can imagine to be able to see, will mean to be able to better learn and develop. I am especially excited over this aspect. My parents both had surgery to remove cataracts and they both said it was a miracle how well they could both see after the surgery. My father said he was able to see colors, literally for the first time in his life and didn't realize how blue the sky was. It brought tears to my eyes to hear that. Now we can't tease him about colorblindness. That's a good thing!

On another note, we have just received word that Travis, Bryson's daddy will be deployed on March 1st. It is looking like the Army will be sending him back to Afghanistan, in Kabul. The Army is in need of medics to relieve those that have been over there for a long time. It is my deepest hope that he will be in the Hospital on post rather than out in the field as he was back in 2006, just before Bryson was born.

When Bryson was born and the diagnosis of Trisomy 13 was received, it was rather bleak and thought that he wouldn't survive as most with such a diagnosis. As a result, Travis did not have to return to Afghanistan. However, since then, Bryson has been really doing well, is healthy and has these surgeries to repair the things that Trisomy 13 brought him. I felt very heavy hearted to learn of this news, but Travis, is an excellent medic and a valued asset to the U.S. Army and this is what he was trained and prepared to do. We, also as a military family understand this and give him our full support and prayers. We love you Travis!

I am so proud of Dana and Travis and how they have handled every thing that life has sent their way. These are people that the media should focus on. People who make the difference in the lives of those they encounter. Why don't they have stories on the news about them instead of those icons Hollywood and the music industry produces, that set their paths to self destruction and chaos and don't really do anything for anyone else. They are all so self absorbed. Travis is a great combat medic who has saved peoples lives! He is the Greatest Daddy to Bryson. Dana is a photographer, taking babies' first pictures in the hospitals in San Antonio. She recently did bereavement portraits for a family of an infant that was stillborn. She gives her heart to her work, you can see it in her pictures. She shares in the families' joys and in their grief. She lavishes love upon Bryson. She is my best friend and a daughter I am most proud of. Dana, if I could have had 10 of you to bring into this world to make it a better place, I would have! (But the labor and delivery would have to be easier!)

Happy 2008

I am so thankful for our blessings in 2007. We look to 2008 as being a year of many firsts for Bryson. He is healthy and keeps changing into this playful, funny fireball of energy. To those who thought he would die inside a week, I say, "See?, God has a plan for this little boy." He is here to teach us all not to expect what is the norm. Expect the unexpected!

To those of the medical community and those who write your medical journals, may your minds be kept open to give your patients and their families the benefit of any doubt about what Trisomy 13 is and ALL of it's possibilies. Be sure that when you inform a family of the diagnosis prenatally or as in our case after birth, that you also tell them the truth about the survivors. Tell them that there are many of them and that with the proper care and treatment which should be made available to them, the possibilities are endless!

We have so much yet to learn about the wide spectrum of Trisomy 13. Why are some children mildly effected and some have the worst possible case scenarios? In any case, children with Trisomy 13, or any rare Chromosomal Disorder should be not be judged by the statistics, but as the individual with different, yet specific needs to be addressed.

Initially, we were told so many things about Bryson. That he was a "textbook case", and we have come to find that many of those findings were just not true. Don't let the textbook lure you into believing all that's been written to be true about Trisomy 13. Bryson is writing his own version daily!

Christmas Montage

Bryson's Christmas

Merry Christmas!

Send me to Grandma in South Carolina!

Postage is how much?

Bryson is now a little more than 18 months old and is doing very well. He continues to grow and develop at his own pace. He had a very Merry Christmas with Mommy & Daddy in San Antonio. He enjoyed opening his gifts but then, playing with the boxes, bags and wrapping paper proved to be so much more fun!

Happy 1 & 1/2 Un-Birthday

let's grow old together! Baby love is so sweet, it'll make your dentures ache. I just want to play and learn lots of wonderful things!

Bryson's first plane ride

Bryson at the airport-first flight

Here's Bryson with Great Grandpa Bob McDowell

Bryson with Great Grandma Ann Maloney

A moment of peace with Mommy

Bryson & Dana flew up from San Antonio and me from Charleston to Indiana, our hoosier homeland to see our family and celebrate an early Thanksgiving. The leaves were in their full technicolor beauty which she and I miss about living in the South. There really isn't a "fall". It just goes from hot to cold with no real transition in between. Dana fixed a wonderful meal for Sunday Dinner of Rock Cornish Game Hens with wild rice stuffing with cranberries and almonds and Granny Smith apples. Yum!

It was nice to see my folks as always as I've been traveling so much to see Bryson since his birth. He is now 17 months 10 days and doing great. First thing he did when he got to his Great Grandparents' home was to crawl! We've been waiting for like next to forever for him to do it. He just wasn't in front of the right people I guess! Bryson loves his Great Grandma and Great Grandpa. He was keeping her amused by his antics and he loves to be held by him.

Bryson also got to meet his other Great Grandparents for the first time. (on his Grandpa Mark's side of the family) They also live in Indiana, but spend winters in Arizona.

Spreading the word

http://specialchildren.about.com/od/inspirationalvideos/youtube/tri13a.htm

I'm always looking for ways to link up this blog to other websites that feature stories of inspiration and information on children with Trisomy 13.

If anyone who has visited here knows of any websites that I may place a link there to bring them to this blog, please e-mail me or leave a comment on the blog. I also like to place a corresponding link in my weblog to those sites; so that when a parent-to-be, that has a newly diagnosed child with Trisomy 13 visits here; they can follow one link to another and learn as much as they can.

When we found out at birth that Bryson had Trisomy 13, it took forever and ever to even find anything written about it. (as well as finding anything up to date!) All I could basically find were things on how bad it was and volumes of material on the mortality rates.

I want to shed light on it that it isn't necessarily a death sentence for a child as many uninformed perinatalogists and doctors may think. There are many survivors! When I listed Bryson on the living with trisomy 13 website, there were only 33 children listed as survivors. Go there now and you will see that there are now 76 children!

Have hope, have heart and stand up for the health care your child deserves and learn as much as you can. Your knowledge is power!


http://www.livingwithtrisomy13.org
http://rarediseases.about.com/od/rarediseasesp/a/patau05.htm
http://healthresources.caremark.com/topic/topic100587269
http://www.trisomy.org/index.php

More pics

Lip Repair

On September 19th, Bryson had surgery to repair his cleft lip. At the same time, the Opthalmologist did ultrasound on his eyes and the jury is still out as far as the findings from that test. He also had a hearing test while under sedation and we will learn more on that as well. The repair to the lip was a success and he really looks different and I think that there will be more positives to come as he continues to heal. Unfortunately, he bumped the lip area on a part of his "Jumperoo" chair and it started bleeding. They used surgical glue to help the skin from the two sections of the outer upper lip to heal without scaring that often comes when using sutures. They did however have to use sutures on the inner part of the lip inside the mouth. It also appears that they realigned the septum of the nose so that it would be more symetrical. Like I said, he has a different profile and a different smile (even though it hurts a little to smile) he keeps trying. He has been a brave little boy and I admire his spunk and spirit.

He has changed alot since I was here in San Antonio back in June for his first birthday. He has changed a lot since then. He is so much more active (wiggly) and on the verge of crawling any day now. He is very strong willed and is making strides everyday. We are so very proud of him.

New Pictures from Auntie Manda

The Family went to Guinness World Records Museum.

Pictured right to left: Conrad, Amanda, David, Travis, Dana & Bryson in stroller

Dana & Bryson make an "appearance" on the Oprah Show.

Two amazing works of art.


The Nault Family

Conrad and his two nephews Bryson & David

Amanda and David







Here's my favorite: Kissin' Cousins

Surgery Scheduled

Bryson is scheduled for his lip repair on September 19th. At the same time, there will be an ultrasound performed on his eyes to see if cataract removal will help him to see. I'm really nervous about the surgery, because he'll look different, and I'll miss seeing him as he is, the way God made him. But, you do have to look at the many benefits to having the lip repaired and that hopefully, he'll be able to eat better and breathe better through his nose. He may make different sounds than what he is doing now. He's recently picked up a new sound. It kind of sounds like a cricket chirping. We have no idea how he makes this sound, but it's funny to hear it.

I will be flying to San Antonio to be with him and Mommy & Daddy for moral support and to catch glimpse of his new face.

Please keep us in your thoughts and prayers as surgery is always kind of nerve wracking.

What's going on?

It's been a while since I've posted to this blog, and I apologize to those who want to stay informed about Bryson. In a nutshell, he's been doing well. He is on the verge of crawling.

Soon they will be consulting with the ENT that did the surgery for the tubes in his ears. He, along with a Cleft Team will be there to perform the surgery to repair Bryson's cleft lip. (the palate will come later) For more information on Cleft Lip and Palate repair visit:

http://www.plasticsurgery.org/patients_consumers/procedures/CleftLipPalate.cfm

Bryson had an Opthalmology appointment this week and they will perform an ultrsound on his eyes while under anesthesia for the cleft lip surgery to see if the cataract on one of his eyes can be removed to improve his vision. Pediatric cataract surgery differs from adult surgery which can be done outpatient and visual accuity improves dramatically. With Bryson's cataract being congenital, (meaning at birth) along with Micropthalmia,finding the proper solution to cataract removal and possible IOL (Intraocular Lens) implant or other may improve his chances to have some seeing capability.

I am planning to fly to San Antonio when Bryson has the surgery so I can be there to help where needed and to see baby's new "makeover". Folks this is as real as a reality show can get. But you don't see the networks clammering to see what the Naults live everyday. As always, please keep them in your thoughts and prayers as none of this is easy.

Surgery went well

Bryson had surgery on July 19th to place tubes in his ears and to cut the lingual frenulum. That is that little ligament under the tongue that allows your tongue to move freely. His was tight...thus tongue tied. Even though he had not had any ear infections, the pressure of fluid behind the eardrum may have caused a slight hearing loss. It is difficult to tell at this point how much, but there will likely be further testing. The surgery on the tongue is a quick little clip and then it is cauterized to stop any bleeding. This will help him with feeding issues and later with speech. He did very well and was very brave. Thank you for those of you who keep him in your prayers. He is a little trooper and is happy and healthy.

Tumbling Tumbleweed

Make video montages at www.OneTrueMedia.com

Granna Loves Bryson

Make photo slide shows at www.OneTrueMedia.com

Bryson's 1st Birthday Bash & Barbeque

Bryson and family and friends from all over celebrated his first birthday. We had around 25 people stop by to enjoy the celebration of his first miraculous year of life. Family traveled from as far as California, South Texas and South Carolina. Many friends from the military community, friends from respite care and other well wishers dropped by to enjoy barbequed chicken and burgers and way too much food! Bryson had a special banana cake baked by his great Aunt Eva(Tia Eva)from McAllen, Texas. He received many special toys, clothes, CDs, a rocking horse from Mommy & Daddy. It was a busy but very fun day for all.

Upcoming FIRST Birthday!

I'm so excited! Grandpa Mark and I will be flying to San Antonio next week for Bryson's first birthday. It has been a very fast and remarkable year. Bryson is doing very well. He is healthy and happy although he could sleep more according to his Mommy & Daddy. We are looking forward to seeing him and Dana and Travis and getting all caught up to date. Grandpa Mark hasn't seen Bryson since July of last year, so I'm sure he'll see how much he has grown and changed. I am compulsive and have to see BEAN more often. I should be getting some frequent flyer miles by now. In fact, I've flown around the country more this past year than any other time in my life. (I used to be quite afraid of flying but now, it's only the seats that bother me. They can make something that weighs tons fly above the clouds, yet they can't make a seat feel like it's got some cushion in it? Oh yeah....I guess if it had more fluff, you couldn't use it as a flotation device. Well, I've got plenty of fluff to be a flotation device.)

Anyway, we're looking forward to a very happy birthday for Bryson. I can't wait to see him and plant Gramma kisses all over him.

Happy Mother's Day Dana-A tribute to a new Mom

This is Dana's first Mother's Day and I just want her and the world to know that I think you are a wonderful Mommy to my grandson Bryson. You put an enormous amount of love and care each and every day sacrificing so much for the sake of your baby boy Bryson. I know it has been a whirlwind of a year and this time last year, we had no idea what motherhood was going to be like for you. When we found Bryson was diagnosed with Trisomy 13 after he was born, it was like a huge crushing blow to the chest because the doctors did not give us hope that he would survive. But because of the love and nurturing and care that you give Bryson daily, he is a survivor. I admire you and the beautiful woman you are. You have more strength of character than so many others. I love you more and more every day. As your mother, I am profoundly proud of you. I wish others knew your devotion and compassion for the ones you love, but hopefully they will know if they read this tribute to you my lovely daughter. I love you...your Mom. Happy Mother's Day

Up all Night

It's yet another sleepless night at the Nault household for one weary mother. Bryson just can't stay asleep, and nothing, no matter how hard I try will send my little darling to sleep a whole night through. I know I am novice to the entire mothering shtick, but surely by now some sleep should be awarded me. It's so hard to gage at times what ought to be typical baby behavior and that what distinguishes trisomy babies from all others. I want to believe that this is normal and that it's not as tiring as it gets but that other mothers are dealing with the same dilemmas. I dont feel like there's much to bond over with other moms because I know they just feel sorry for me and thank god for their own lot in life. I guess that's why I have such a hard time imagining meeting moms with other trisomy kids because I don't want to be like them either. Not that I don't appreciate the struggles that they've endured, but I just don't see my self as the proud owner of an imperfect child. I am proud of my son, I think maybe by comparison he's better than other trisomy babies, but I don't want to know what it's like for those other little boys and girls because it's a disheartening experience to have to share. And I don't want to judge because I know that I have been judged, and I just don't feel like I know where to fit in. Not that anything would change with the way that we care for our son, but just to ease our minds that we can take comfort in things being truly well. You know we went from not having the solice of taking a single moment with Bryson for granted to dreaming the possiblities of his future all over again. Granted it's not the sort of future that seems to really lead anywhere.... but to at least a destination that may allow for Bryson's potential to progress and develop as much as it can. Sometimes the prospects of the future appear so vague and unrealistic, and then the reality of what is, is eerily exposed day by day playing out a scenario that defeats positive thinking. Folks, it's not even the nitty gritty just yet, so today may not have been the most stellar, I might just need to sleep, but tomorrow my little Bean might just start to crawl, say Dada and make the world seem right on track again. Travis and I put forth so much love and energy and devotion to give Bryson a happy little world to live in. The little rewards that most other parents receive in such quick succession that ables them to watch their bundle of joy turn into toddlers then kids and beyond... and we have to work tirelessly for a simple glimmer of that moment, well sometimes it doesnt come when we want them to. But we never give up and never will so long as Bean keeps receiving our love and encouragement.

Happy Easter!