I just wanted him to be able to high-five. And smile. That's all I wanted.
And now his hearing?!? I mean, seriously, on top of all of this, he's not even going to get to hear?!?
He's my son. My SON!!!
I just want him to get to be an adult.
Why did they give him to us if they're just going to take him away?
It's not your fault. It's not our fault.
It's just cruel. After all we went through to have our family. Just so goddamn unbelievably cruel.
We had another meeting yesterday.
Hayden has been diagnosed with Infantile Spasms with a likelihood of Ohtahara Syndrome.
I know today will be a better day. Because yesterday was the worst day of my life.
And now his hearing?!? I mean, seriously, on top of all of this, he's not even going to get to hear?!?
He's my son. My SON!!!
I just want him to get to be an adult.
Why did they give him to us if they're just going to take him away?
It's not your fault. It's not our fault.
It's just cruel. After all we went through to have our family. Just so goddamn unbelievably cruel.
We had another meeting yesterday.
Hayden has been diagnosed with Infantile Spasms with a likelihood of Ohtahara Syndrome.
I know today will be a better day. Because yesterday was the worst day of my life.
I have no words. I have been following your journey from the other side of the world and all I can say is I wish for all the strength, grace, courage and love you need for yourself and your family. Thinking of you.
ReplyDeleteYou did have words, and they mean the world to us. Thank you so very very much for your support.
DeleteOur thoughts and prayers are with you all... as a parent all you want is the best for your children and it hurts to see them suffering. Take care of all of you and love the time you have.
ReplyDeleteThank you for the good thoughts and prayers, and yes, we are loving every second of every day.
DeleteI am so sorry to read this. My close friends baby was diagnosed with this earlier this year. My heart sincerely goes out to you.
ReplyDeleteThank you, Kim.
DeleteI am incredibly sorry to read this devastating news. You are in our thoughts and I can only pray you can find the strength to somehow get through this. All of our love to you. Please know that so very many people are thinking of you.
ReplyDeleteI'm sending you a big virtual hug right now. I pray for you always!
ReplyDeleteI just got that hug... and I thank you so very much! And we do, as always, appreciate the prayers.
DeleteGuys you are in our thoughts and prayers. We have followed these two amazing littles ones since the day the were born and even though we have never met consider you all part of the family. Just remember god never gives us more than we can handle and that there are people all over the world that care for your family very much. Stay strong and cherish every moment you have with both of your little ones.
ReplyDeleteSuch lovely words. I tell Hayden everyday all about the worldwide friends he has yet to meet in person. We feel honored to be considered a part of your family because we sure think of you all as ours.
DeleteNo words can describe my feelings for you and your family.
ReplyDeleteTry to disconnect those awful diagnoses and let him just be Hayden. Whatever happens, he is yours, he is real and you will always be his mommy who did everything, EVERYTHING you ever could in order to make his life as best as possible. He has given you and will give more than you can ever imagine.
Tons of hugs and so much strength
Excellent advice and thank you for the words of encouragement. We thoroughly appreciate the hugs and promise to stay strong!
DeleteI'm thinking of you all.
ReplyDeleteand we truly truly appreciate those thoughts. Thank you.
DeleteHayden, you and the rest of your family are in our thoughts. So sad to hear this news.
ReplyDeleteThank you, Stacey. Happy 10 months to your little guys. Hope that Hayden will get to meet them in person one day.
DeleteI am so sorry to hear this - you and your entire family are in my thoughts and prayers.
ReplyDeleteThank you so much. Those thoughts and prayers mean the world to us.
DeleteI'm holding your family in my heart. You are in my thoughts and in my prayers. Much love.
ReplyDeleteThank you, Nibe-- for the thoughts, the prayers and the love. It means so much to us.
DeleteOh god so sorry!
ReplyDeleteSending love from Western Australia. So little else I can do.
ReplyDeleteSo very sorry the news isn't better.
Much love
Bridg
Dear Bridg, Your love and comments are huge to us. Thank you, from the states.
DeleteI can't even find the words to express how sorry I am to hear this news. It is not fair - that is what I keep thinking. We are all thinking of your family during this time. The comments previous to this one mentions how much you and your family are truly loved by an international family - and this is so true.
ReplyDeleteAnd we love our international family. We are so so lucky to have this incredible support. x
DeleteI have no words to bring you comfort.
ReplyDeleteI'm sorry.
mark
As a Nicu mom alumni, I know how cruel, unfair, and overwhelming this experience can be. I read somewhere that these experiences make you a better mother. A term I heard was Dragon Moms- Fiercely loyal and protective. I am not sure if its true, but I like to believe so.
ReplyDeleteI am so sorry to hear this....
ReplyDeleteI am thinking of you all and totally agree its just not fair xx
Thinking of you and your family. I am sorry to hear this news. Sending you Strength and courage and tons of love.
ReplyDeleteThinking of you and sending love.
ReplyDeleteI am so sorry you have to face this on top of everything else.
I am so sorry for this turn of events. Please know that so many people, around the world it seems, are praying for Hayden, and for the rest of you as well.
ReplyDeleteI'm so terribly sorry to read this. Prayers to you and your family. So not fair.
ReplyDelete(((hayden)))
ReplyDeletei am so sorry for the news you have received... it is total devestation to know that you may not see your child grow up...
if i could offer any solice, it is that life is what it is, and for mr.cheeks. it is a life filled with love from his momma, love from his dad, his extended family... well travelled, well loved, and all of the things that we mourn for him- the experiences he may or may not have, the things we wanted for him, they will all fall away, leaving the essence of what it is to live a life here on earth... to be loved. which he is, and then some, by so many!
i so hope that he is able to be comforted, that he does not suffer one unnecessary moment of time. please keep us all updated on him, and remember how well-loved *you* are. a very special, strong woman, a wonderful mother to her children.
As the mom of a child with epilepsy...we were sadly educated on Infantile spasms. I am so sorry to hear this...I know he is in the right place with excellent doctors and I am hopeful he will have success with medication. We have a close friend who's son was diagnosed with this at about 6 months old (we share the same pediatric neurologist as well). They have been very successful with medication and he is now a school ager and a super smart boy. He needs a bit of extra help, but he is running, jumping, climbing trees and living a really good life....it is medicated, but he is a joy and a happy boy. I pray for you all the same things.
ReplyDeleteI am so profoundly sorry for your news. I've followed your blog since before Hayden's conception & will continue to hold you all in our prayers!! Sending strength!
ReplyDeletePraying for your family.
ReplyDeleteFeeling your indescribable pain and grief, Bernadette and Duane. So hard to make sense of it all right now. Don't even try. Just trust whatever and whomever you can that the Universe has a place for Hayden. It just might not be where and when you would prefer. There are things so much worse than a life cut short, a return ticket to Heaven. One day you will understand, you'll see the whole circle complete. You're not the same two people you were going in. You never will be. But when you see the Big Picture, you wouldn't want to have missed it. Stay strong. (Mom who's been where you are now)
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI have been following your journey for a long while and kept your family in constant prayers.
ReplyDeleteIt is so unfair for little MC to go through all this. I hope and pray the best for you guys.
- Roopa
I agree with Anu, you are his mother, a mother who will do everything she can for her son. God gave him to you and Duane because He knew you would love him regardless of this diagnosis and would make Hayden's time here on earth the best time ever. None of us know how long we have, in Hayden's case he will have a mommy, daddy & sister to take care of him and love him throughout his life. It sucks, but you are truly amazing Bernadette, I know you all will make the best of this and get him the best possible help. You will shower him with love because you have SOOOO much love to give. God knew He wanted you to be Hayden's Mommy, Because you are strong and loving, He chose you. Our thoughts & prayers are with you all.
ReplyDeleteI have no words only love I am sending with all of my heart, I am in tears on reading this. Love to you all and all of my strength x
ReplyDeleteHayden is a lucky boy to have such strong parents. Thinking of you everyday.
ReplyDeleteIan & David XOXOX
Sending you all my love and prayers... Such a cruel, cruel thing to have to go through.
ReplyDeleteI wish there was something I could do. Make you a casserole, or watch Scarlett for you, or something. If there is anything that can be done from afar, I'm sure I'm not the only one who'd be glad to help. Life is so unfair sometimes.
ReplyDeleteThis is unbelievably unfair. I'm so incredibly sorry to hear about it, you have all been through so much. Sending love and positive thoughts through the universe.
ReplyDeleteI am so so sorry. I have no words. It is so unfair that after all you've been through you still can't have the peace and happiness you so much deserve. I wish I could be there to give you a huge hug... The only consolation I have is that MC has the best possible mom one could ever have. Tons of love to you!
ReplyDeleteThis makes me so mad and sad for you. After everything you have been through you all deserve the best.
ReplyDeleteI am truly sorry to hear this. You are all in my prayers everyday. Thinking of you K&J
ReplyDeleteNo words--just praying for a miracle. We are beyond sorry to read this news.
ReplyDeleteYour children are love, loved and loving. Both are miracles of your love and will find comfort and joy in you and Duane always.
ReplyDeleteLove is all I can send you..... May you all be surrounded with it always.
O.C. Grandmother
Oh B...that just sux...I wish there was something I could do...I think of you guys daily and wonder how you all are doing...hang in there..you are a strong woman...you have been through so much and are such an inspiration to everyone in the surrogacy community...I am so sorry...just love him and take it one day at a time...give scarlett a hug and a kiss...Your family is in my prayers...take care and God Bless....
ReplyDeleteContinued prayers and hugs.
ReplyDeleteOh Bernadette and Duane - I am so sorry to hear this news. May wrote what I was thinking. You are a wonderful mother, and God choose you to be Hayden's mom because you were the right person for the job. And you do a wonderful job. Keeping you any your family in my prayers.
ReplyDeleteI know you're feeling powerless, so perhaps this is cold comfort right now, but Hayden couldn't have better parents. And we're thinking about you.
ReplyDeleteI am so so sorry to read this. You, Hayden, and your whole family are in my thoughts and prayers. Life can be so inconsolably cruel sometimes and I know there is nothing that can fix that. MC is lucky to have such a special mom.
ReplyDeleteOooh Bernadette..I guess the mystery has been solved after all this time.. and we are so heartbroken for you and your family.There is no answer to why life give and taketh away( i wish i knew),I wish i can mend your heart and make everything better for Hayden,we all do ..All I know is that all your love and dedication will be felt and shared for years with Hayden.He is an amazing little boy!!
ReplyDeleteYour an amazing mom and have a beautiful family.Enjoy every moment,hold him and love him as you always do.No matter what his prognosis,he feels your love shine through.Hugs to you and your wonderful family....
kitty and david
I'm so sorry that this is happening after everything you've been through to finally be a family. But you are strong, and the love that you all have for each other will get you through. Your family will be in my prayers.
ReplyDeleteOh, Bernadette- there are no words for how sad and unfair this news is. You are right about one thing- Hsyden is YOUR son, and that means that he will be blessed for each and every day of his life with a mother who will literally go to the ends of the earth to make his life rich, full, and overflowing with love. You are a gift to him and he is a gift to all of us who have been following your story. You are a remarkable family, and I am betting on Master Cheeks to be the best Hayden he can possibly be. Strength and support headed your way.
ReplyDeleteYou and your family are in my thoughts and prayers.
ReplyDeleteI found your blog through LFCA. I'm so sorry to hear this news about your beautiful boy. For what it's worth, one of my twins had complex medical issues as a newborn, too, although different from yours -- and one thing we discovered is that although the doctors are doing their very best, they aren't always right, and sometimes these kids surprise us with how well they overcome the problems that life has thrown at them. No matter what happens, though, it is clear that your family's love for MC will make his life as good as it can be with whatever comes his way. I will be keeping you in my thoughts and hoping for the best for MC and all of you.
ReplyDeleteHolding you and your family in the Light.
ReplyDeleteThoughts and prayers to your family. He is blessed to have parents who will do all they can for him.
ReplyDeleteA world of love, an ocean of tears, stars of forever.
ReplyDeleteYour children and family are gifts to all of us. Hayden will always and only know and be love, a special gift to us all.
Bernadette and Duane, I am saddened to read this latest news. Hayden is a fighter though look what he has already achieved over the past 5 months. I also know how determined his mummy and daddy are. Hang in there. Sending you hugs, prayers and support across the ocean...I really hope I get to meet you and your little ones in person one day. Your family is an inspiration.
ReplyDeleteSo sorry to hear that news, I hope you're both doing ok and both Col and myself are thinking of you all x
ReplyDeleteBernadette, Hayden is a beautiful little boy and so loved no matter what. I hate to see you and your family suffering like this, it hits very close to home for my family. Your love is the most wonderful gift to your children. Uncertainty is terrifying when it comes to the health of your child, take one day at a time and treat yourself like your best friend, let friends and family help as much as possible. Prayers for Hayden and your whole family. Hugs from Australia xx
ReplyDeleteThere are simply no words. I'm so, so sorry. I hope that you truly can feel all the love that is coming at you right now. Tons of love.
ReplyDeleteBernadette,
ReplyDeleteAll I an say is you are a awesome mother, you have gone through so much and are such a strong woman. I give you all the love I can send your way for you and your beloved boy. I pray that he will grow to be a happy adult someday. We have talk for sometime, and I feel like your world has been a part of mine. Just know when I got to sleep tonight I will ask god for another prayer for you
Michael
As you know we have been following your journey. Seen your strenght and your way to make everything as good as possible for your beloved Hayden and we feel so sad for you and his sister for the diagnoses his got. Hopefully they are wrong...
ReplyDeleteMy father got a diagnose when he was little that he probably won´t reach adult age. He is now turning 70 years old. Hopefully this will happen to Hayden as well.
Let´s hope for miracles. Thinking of you and your family at this hard time of life.
Love,
Oh, Bernadette - I am so sorry to hear this. You and Duane have come so far - and you have two beautiful children to show for it. We will be thinking about you often.
ReplyDeleteOh, my heart aches for you. I have been following your journey. I also have b/g twins from donor egg, who are 10 mo old (7.5 adjusted), and am a NICU alumni, so I have a small bit of understanding of where you are coming from.
ReplyDeleteMany prayers and hope for Mr Cheeks, and you all as a family. Accept the diagnosis, and you and Mr Cheeks fight the prognosis, this world works in miraculous ways (as you already know from your experience to date!)
Bernadette,
ReplyDeleteJohn and I are devastated by the news. We can empathize with your pain. Our thoughts for you and your family are echoed so eloquently by all those before us. We know nothing we say can make things better for you, but please know that you, MC, Scarlett, and Duane are in our thoughts almost everyday. We pray that MC will get better and look forward to the day we get to see him again! Please let us know if there's anything we can do to help.
Love,
John and Michael
I pray that little Haydwn grows up and lives a long life, which I am sure he will. Have faith and know that modern technology can help to control his symptoms, children with this disorder can be seizure free. Get second and third and fourth opinions if needed.
ReplyDeleteSending you a big virtual hug and praying for strength for you and your family!
ReplyDeleteOh gosh, Bernadette...so incredibly sorry. Though many of us have not met you, we have this love for your family that transcends everything. We are a community of people that have shared the best and worst of times together when it comes to babies, trying to conceive, miscarriages, and terrible diagnoses like these. I know the power of positive thought and prayer is in the works around the world for you and your family...it has been heightened for many, many months. And it will continue...big hugs.
ReplyDeleteI have you in my thoughts every single day. MC could not wish better parents. Big hugs
ReplyDeleteLove the new header, two beautiful babies! I hope you get some good news re: MC soon.
ReplyDeleteI'm so very sorry. And, it's NOT your fault. Never ever think that thought again - either one of you. We all know that you are doing everything right with regard to Hayden's care, and that you will continue to do so. My heart aches for you all.
ReplyDeleteK.
I'm just so very sorry. Hoping you can find some beauty in the moments you share as a family today.
ReplyDeleteI am so sorry you are going through this. Can't even begin to imagine the pain you must be going through.
ReplyDeleteThere are no words ..........I know you will help mc fight his battles - you are a brilliant mum...he got lucky when he got you.....
ReplyDeleteI have been following your journey since the twins arrival. They are very lucky and blessed to have you as their mom. I too am the mom of a DE baby with a birth defect (hearing loss). It is hard, but ultimately they are our children and their love makes it okay. I am so sorry to hear of Mr. Cheeks diagnosis and pray that he will exceed the prognosis. God bless you and your family. Love and prayers.
ReplyDeleteDear Bernadette & Duane
ReplyDeleteSince reading this post I have been trying hard to think of some comforting words at this very difficult time, but I have failed, I have no words of comfort to offer. Hayden is a very special and God chose you as is parents because you are special as well. We have spent the weekend in the Gurudwara for Hari's Sikh blessing. We prayed hard for Hayden, you, Scarlett and all family and friends. You are always in our thoughts and prayers. All our love Avey, Vinay, Mia and Hari and our family. XX
Keeping you all in my prayers.
ReplyDeleteThinking about you.
ReplyDeleteKathrin
"Hearing" is not just through the ear and eardrum. It is also vibration through bone. MrCheeks 'hears' you when you hold him close and your heart beats or you hum or sing or speak. And he knows you and his daddy and sister from all other people.
ReplyDeleteHe knows he is loved and that is special and wonderful for any child ~ and he is lucky for this reason.
Hugs
Old Ca Grandmother
I'm sorry, Bernadette. My heart goes out to you. You are such a wonderful mother to both of your children, and Hayden is so lucky to have you as his mother. xxx
ReplyDeleteHi Bernadette & Douane. I have no words... just sending a lot of love to your very strong and lovely family !!!
ReplyDeleteYou are the best parents of the world !
big hugs !!!
Also follow your blog from far away in South Africa (cannot even remember how I stumbled upon it). I am thinking of you all. Cannot imagine how unbelievably hard this must be for you all. So pleased that you are home and with your friends and family.
ReplyDeleteoh B, I am so so sorry. What brutal news to hear. Hayden is lucky to have such devoted parents and you have him in the right place to get him the best care. Sending you many thoughts and wishes for you guys to catch a break soon.
ReplyDeleteMo
Support coming from Colorado too! You are a wonderful mommy. Be sure to take care of yourself.
ReplyDeleteWords can not express who how incredibly sorry i am that y'all are going through this. You have shown so much strength, perseverance and faith through your entire journey that I am confident you can handle anything God puts in your path. No one deserves to feel this kind of pain, especially you. God Bless you, Dwayne, Scarlett and most of all Hayden! My prayers for Hayden are everyday. Just continue to do what y'all do best which is be the best parents Hayden could ever have. Y'alls LOVE for him is unconditional and i promise you that he knows that and feels it radiating from you everyday! Sending positive thoughts, prayers and much love your way!!!!
ReplyDeleteViviana
Words can not express who how incredibly sorry i am that y'all are going through this. You have shown so much strength, perseverance and faith through your entire journey that I am confident you can handle anything God puts in your path. No one deserves to feel this kind of pain, especially you. God Bless you, Dwayne, Scarlett and most of all Hayden! My prayers for Hayden are everyday. Just continue to do what y'all do best which is be the best parents Hayden could ever have. Y'alls LOVE for him is unconditional and i promise you that he knows that and feels it radiating from you everyday! Sending positive thoughts, prayers and much love your way!!!!
ReplyDeleteViviana
Each day is a new step...remember that Indian saying: Everything will work out in the end...if it hasn't yet worked out, it's not yet the end.
ReplyDeleteThinking of you all.
You asked the universal human question of Why us/me? Given the path you have walked it is super reasonable, because it is outrageously unfair. You have had so many painful losses. Lots of religions have lots of answers ... and often they do not help because the pain/problem is immediate and unfair and outside our creating.
ReplyDeleteMaybe in our tears we all need to thank Hayden for sticking hard and trying to protect his sister and not miscarrying so she will have life. So you will have joy and laughter. Maybe we are failing to remember Hayden is a hero who carries damage to save another. And maybe there is nothing helpful in these words.
Hoping so much that you are finding your sealegs and that Miss Princess is doing well and you all are finding the comfort that Mr.Cheeks has in your arms. Because he is loved.
I am so sorry to read this. You guys are such awesome parents. You're in our thoughts daily. C&B
ReplyDelete