We had our sit down meeting today with all of the Doctors from every field as planned.
It was devastating.
If Jetty ever learns to smile, he will have made a great accomplishment.
They feel he will never learn to walk or talk.
Jetty will prove them wrong. Together, we will make Jetty smile. Then after we celebrate that accomplishment, we will move on to something else.
Medically...
Jetty will always have seizures that will prevent his brain from developing. The seizures can be softened for periods of time (weeks or months) before they progress and we are forced to try something new. When they get them under control, we will be able to bring Jetty home with a feeding tube that gets surgically inserted into his stomach.
He is prone to physical problems such as cerebral palsy and is likely to get it or something else closely related. His brain is very abnormal and damaged and will never get better nor worse. The seizures are the main concern as they will progress over time.
We have a son with a lot of problems and a very poor prognosis. Jamie and I see those problems as obstacles and will learn ways to overcome them one by one.
Thanks again for all of your support.
48 comments:
You both have the BEST families in the world! We will be with the three of you EVERY step of the way!
I love you so much, Al
We love your sheer determination. We believe you'll get Jetty to smile! We are so sorry for the struggles that lie ahead, but we feel that your resolve will see you through. We, along with lots of others are here for you as well. You two are great parents for little Jetty. He was blessed in that department! If anything can be overcome in his development, you two will find a way! There is just no love like that of your own child. Take care of yourselves....for Jetty. with love, Kathy & Ken
Thinking of you guys as always, and you will continue to have my support along with everyone else's... he is a lucky guy and will overcome any obstacle with your love. Big huge hugs to all three of you guys! -Lid
THAT'S THE SPIRIT! Keep on fighting! TEAM JETTY will just have to pray longer, harder and louder! We are here for you and will continue to be! you're not alone, that's for sure!
We love you all so much and are here for you no matter what you need! Jetty has the best parents in the world and he knows and can feel how much you both love him.
Doctors don't know everything, though they know alot. Sometimes you gotta go with your gut and trust determination to get you through. I think the three of you have a lot of that determination!!!! I'm betting on that smile and maybe a lot more! He's going to do it one smile at a time! ;)
For the good days…(when love conquers all hurdles)
“There is no fear in love. But perfect love drives out fear…. We love because he first loved us.” (1 John 4: 18-19)
For the not so good days…(because parenting is hard work)
“Restrain your voice from weeping and your eyes from tears, for your work will be rewarded.” (Jeremiah 31:16)
Always remember…
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)
Becoming a parent changes your life – God purposed you to be Jetty’s parents and He will bless many lives through you all, as He has already done (you have called many of us to reexamine our roles as parents, our tenderness with our children).
You are in our prayers incessantly.
Jim and Lara
Meagan, Natasha, Jasmine, Ryan, Cameron, & Tristen
Thank God for Jetty. He has two of the most amazing parents anyone could have. God has chosen the two of you to care for His special miracle and together you will do wonderful things! Jetty has proven to be strong thus far and with family and friends he will only grow stronger.
Tasha
Jetty is has the best two a kid could ask for. I believe you will get Jetty to smile and much more..Just have faith, and know that we are all here for you.
Rebecca
Jetty is an amazing little boy. He has captured all of our hearts. you have our support and prayers. if there is anything you need now or when you get home please ask. We are glad to help. if everyone who reads this blog keeps praying i know one day jetty will smile.
Sue and Joe ras
you two are the most amazing people ever, and Jetty will overcome these "obstacles" and we cant wait to meet him! we are here if you ever need anything and you both have amazing families for you to stand back against whenever you need to. we love you and think about every second! xoxoxoxoxo
Jetty is so lucky to have such strong parents. Remember that your friends and families are here for you to lean on just as you are there for Jetty. We think about you all everyday. Lets hope that with research there will be more help for Jetty to help him smile, and to walk and talk.
Creg and Jamie- You and your special sweetie are in my heart,thoughts, and prayers. You know that I am always there for you. Slow and steady, one step at a time, Jetty and you will find his way. You are not in this alone. We love you.
Miracles happen everyday for those who believe in them. We admire your strenth and determination and know that your love for Jetty will bring him through these struggles. Can't wait to meet him, he is so precious. We continue to pray for all three of you. We love you,
Gillian and Matt
Creg & Jamie-
"It takes a village to raise a child" could not be a better statement for your family. Just know that you have an entire "village" behind you, ready to offer support, love and prayers for your remarkable son. We, along with you and Jamie, are ready to face all of these obstacles and are ready to see Jetty smile. You guys really are remarkable parents and that just makes everyone want to be there for you all even more!
Much love,
Erin & Karl
Jetty is blessed to have the two of you with all of your love and strength! We love you and are here for you. Life is full of miracles! Xoxo, Deana and Ed
If anyone can do it, you guys can! Rising above life's challenges shows who you really are and what's important. Thank you for reminding us all how fragile life really is. We can't wait to hear about Jetty's first smile!
As Erin said, this “village” wants to help in any way we can to keep you three strong and positive. Though this challenge is harder than any I have prayed on, I always find comfort in this simple prayer: “God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.” Doctors can be proven wrong; keep the hope.
Much love, Megan & Casey
When Jetty gets home, I will be ready to baby sit anytime you need me. There is strength from all your family and friends. All my love, Mom Mom Charlotte
Creg & Jamie, No matter how long I sit here and stare at my computer screen I can't think of the right thing to say. Something that will comfort you or help you in some way but no words will come. Just know that my heart has been with you everyday. Jetty is a beautiful boy. I guess parenthood isn't going to be what you envisioned...maybe better? Love, Aunt Liz
God gives special children to special parents and Jetty has been lucky enough to have gotten you as parents. Jetty will prove all the doctors wrong when he smiles at his parents. the 3 of you are and will be in my prayers.
You are both so incredibly courageous! I wish you all the best with the obstacles ahead, and I commend you now on the successes that are sure to follow. Little Jetty could never have entered this world into a more caring or capable home. As you have seen from the countless coments and well wishes you have an enormous supporting staff ready and waiting for the opportunity to help in anyway, please utilize us when the time is right.
Emily and Jon
Keep that determined spirit in your hearts. Amazing things can happen. My friend's son was born at 24 weeks and was given a less than 10% chance of living. They said that if he survived, he would be blind and would never walk. Nate turned 11 in January and although he has challenges (seizures being a big one), he goes skiing and rock climbing with his family with some assitance. Prayers are answered every day and there are a lot of prayers for Jetty!
The Smell of Rain
"A cold March wind danced around the dead of night in Dallas as the Doctor walked into the small hospital room of Diana Blessing. Still groggy from surgery, her husband David held her hand as they braced themselves for the latest news. That afternoon of March 10,1991, complications had forced Diana, only 24 weeks pregnant, to Danae Lu Blessing.
At 12 inches long and weighing only one pound and nine ounces, they already knew she was perilously premature. Still, the doctor's soft words dropped like bombs. I don't think she's going to make it, he said, as kindly as he could. "There's only a 10 percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Danae would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. "No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away.
Through the dark hours of morning as Danae held onto life by the thinnest thread, Diana slipped in and out of sleep, growing more and more determined that their tiny daughter would live, and live to be a healthy, happy young girl. But David, fully awake and listening to additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable. David walked in and said that we needed to talk about making funeral arrangements. Diana remembers, 'I felt so bad for him because he was doing everything, trying to include me in what was going on, but I just wouldn't listen, I couldn't listen. I said, "No, that is not going to happen, no way! I don't care what the doctors say; Danae is not going to die! One day she will be just fine, and she will be coming home with us!"
As if willed to live by Diana's determination, Danae clung to life hour after hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Danae's under-developed nervous system was essentially raw, the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Danae struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Danae suddenly grew stronger.
But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Danae turned two months old, her parents were able to hold her in their arms for the very first time. And two months later-though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero. Danae went home from the hospital, just as her mother had predicted.
Today, five years later, Danae is a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She shows no signs, what so ever, of any mental or physical impairment. Simply, she is everything a little girl can be and more-but that happy ending is far from the end of her story.
One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Danae was sitting in her mother's lap in the bleachers of a local ballpark where her brother Dustin's baseball team was practicing. As always, Danae was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Danae asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Danae closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet, it smells like rain. Still caught in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Danae then happily hopped down to play with the other children.
Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Danae on His chest and it is His loving scent that she remembers so well."
This is a true story published in the book 'Miracles In Our Midst'.
Jetty will do amazing things in his lifetime, he has already thouched so many hearts. Stay strong, we are all praying for you guys.
"Never let the odds keep you from doing what you know in your heart you were meant to do"
H. Jackson Brown, Jr.
You are constantly in our thoughts.....
I know it's excruciating, but the three of you remind us all about love, and what life really means. All any of us have is this moment, and we can't really know what the next moment holds, it's challenges or possibilities. We take this moment with beautiful Jetty, he'll let us know what's next. All we can do is jump on for the ride. Everyone loves you.
Give the little guy a kiss for us and tell him to keep on fighting. You're in our thoughts daily. Love, Tom Maggie Emily and Mike
Stay strong!! U r two very amazing parents!! Jetty is lucky to have u as his parents!! One step at a time an u will get that smile and much more!!! Paryers and thoughts r with u an ur family everyday!!!
God only gives us what we can handle. Remember that - Jetty wouldn't be here with the two of you and your family. From your blog I can see that you are doing exactly what you need to be doing - believing. That's truly all it takes. My best wishes and prayers go to both of you, little Jetty couldn't have ordered better parents out of a catalog. Take care and my prayers remain with you.
Laurie Knisley and the boys.
I always liked this:
by Emily Perl Kingsley.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Creg and Jamie,
All one has to do is watch you care for Jetty and it is crystal clear why God chose the two of you to care for his beautiful and very fragile little gift. You remain in our thoughts each and every day.
Gary and Renee
Creg and Jamie - the two of you are so amazing! That little precious boy of yours truly has the best parents. Your love and courage will get him through anything. We think of yall all the time and can't wait to meet Jetty when he comes home soon! Much love, Lindsay and Noah
As many have mentioned we echo, your strength, love, and determination will make the world of difference and help you through the "obstacles". Your family and friends will be there to help you through it all. Jetty is so precious and blessed to have you as parents. We continue to pray for you all and think of you often. We look forward to meeting Jetty.
Love,
Tom, Nicole, and Gabriel
I am so moved by how blessed you and Jamie are.............
As others have said, it takes a village to raise a child, and I think your village is huge! Doctors may know alot but they dont know all and love can do more then they admit! Jetty(and you 2) are loved by many who will help you learn everything you possibly can and then some! Jaime and Creg, there will be times that you are so frustrated and then Jetty will smile(yes I said smile, becuz, he will!) and you will know why you do everything you do! Good luck and God bless all 3 of you!
Peggy
Jetty is strong because of the love he has fom his family. Never lose your faith. Jetty will smile and he will do great thing because his parents are awesome. God Bless
Creg & Jamie,
No way could Jetty live with the two of you and not smile...he'll be belly laughing before long!! Don't give up hope. As others have said, miracles happen every day. Just have faith and take it one day at a time. Jetty came into your lives (and all of our lives) for a reason. He is a very special little boy born to two special people. Keep your chins up, but remember that if you stumble on that long road ahead, we're all here to catch you and get you headed in the right direction again. Lots of love, Susie & Thom
Simply amazing, the three of you....
Jetty is very lucky to have the 2 of you. The determination the 2 of you show will help Jetty to overcome the worst obstacles. I know this is not how you guys expected to spend the first few weeks of your young sons life, but the strength the 2 of you have and the many friends and enormous family will all help to raise him to be as strong as the 2 of you are. Stay strong and keep a positive outlook and Jetty will be home soon recieving visits from the everybody.
I am so in aww of your precious and unbelievably strong family. Jamie you once told me that what makes a strong person is "being able to hold your head up and deal the problems that come your way", I now see why I listened to you. You truly are one of the strongest people I know and one of the best mothers I could ever imagine. I send all of my love and support to all three of you. xoxo - Erin W.
Jetty,
You are the luckiest little boy in the world. Your parents are willing to fight for you to have the best life possible. I am the mommy of another special person named Courtney who doctors said wouldn't live past three. She is now 17 and has seizures everyday. She doesn't walk or talk, but as her mommy i know exactly what she needs just like your mommy does for you. Be strong little one. God is with you and your parents. He will not leave you. Courtney and I will be praying hard for you and the doctors to know how to best help you. Never give up, never quit. May God be wiht you. You are in one of the best hospitals in the wrold. Courntye was there many years ago and also was on the Ketogenic diet for several years. It was a great success for awhile and then we had to try something new. If your Mommy and Daddy need some encouragement they can email me at mary_romance@cox.net. We will be praying Jetty!!
Jetty,
You are the luckiest little boy in the world. Your parents are willing to fight for you to have the best life possible. I am the mommy of another special person named Courtney who doctors said wouldn't live past three. She is now 17 and has seizures everyday. She doesn't walk or talk, but as her mommy i know exactly what she needs just like your mommy does for you. Be strong little one. God is with you and your parents. He will not leave you. Courtney and I will be praying hard for you and the doctors to know how to best help you. Never give up, never quit. May God be wiht you. You are in one of the best hospitals in the wrold. Courntye was there many years ago and also was on the Ketogenic diet for several years. It was a great success for awhile and then we had to try something new. If your Mommy and Daddy need some encouragement they can email me at mary_romance@cox.net. We will be praying Jetty!!
Jetty,
You are the luckiest little boy in the world. Your parents are willing to fight for you to have the best life possible. I am the mommy of another special person named Courtney who doctors said wouldn't live past three. She is now 17 and has seizures everyday. She doesn't walk or talk, but as her mommy i know exactly what she needs just like your mommy does for you. Be strong little one. God is with you and your parents. He will not leave you. Courtney and I will be praying hard for you and the doctors to know how to best help you. Never give up, never quit. May God be wiht you. You are in one of the best hospitals in the wrold. Courntye was there many years ago and also was on the Ketogenic diet for several years. It was a great success for awhile and then we had to try something new. If your Mommy and Daddy need some encouragement they can email me at mary_romance@cox.net. We will be praying Jetty!!
With parents like you and with the family support that he has, Jetty will be smiling at all those Doctor's who said he couldn't. Remember those Doctor's are always "practicing" medicine and sometimes they don't get it right, like in this case. He has some Wright blood in him and us (or is it we) Wright's ALWAYS smile, and most of us can't shut up. With your resolve and determination Jetty will be fine. Wish we could be there but since we can't, our thoughts and prayers remain with you. Great Uncle Bob & Great Aunt Cindy
Lots of corny jokes...and a good fart machine.
He'll be smiling in no time!
Thinking of you daily...
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