Sunday, December 23, 2007

Diagnosis

The doctors say Jack has Mobius Syndrome. It is a rare disorder where some of the cranial nerves don't form properly. Some people have only one nerve affected, some two.... Jack seems to have a pretty severe form.

It explains why he can't look to the side, or really control his eyes well at all. Why he doesn't suck or swallow. Why he seems to have no facial expressions. It could also explain why he can't breathe. The muscles controlling his tongue, throat, vocal chords, could all not be working and therefore they close up or block his airway.

That's aside from his chronic lung disease, which doesn't ever seem to get much better. It's a vicious circle. Being on the vent makes his lungs worse, but he can't get off the vent if his lungs don't get better. Being suctioned makes his lungs worse but he constantly needs to be suctioned because of the secretions in his mouth and nose that he can't swallow.

It's not good. He is possibly looking at a life of being on a vent, eating through a hole in his stomach. Drooling constantly, having crossed eyes, a speech impediment. Maybe even being severely retarded, though there's no way to know if his brain is affected right now.

Never being able to smile. It breaks my heart to think that he can never smile. How cruel is that?

But again - if he can't breathe on his own, nothing else matters. I won't have my child live his whole life with a hole in his throat, hooked up to a ventilator. I just won't. And the chance of him getting off the vent is not good.

The doctors are going to try and get his lungs better and see if that helps, work on his chronic lung disease. If his lungs are better and he still can't breathe on his own then it's because of the Mobius and there's really nothing to do about it.

I am beyond sad. I am heartbroken. I am devastated. I'm angry at everyone and everything. I have lost faith. I will never be the same. I will never get over this. I want my baby. I want him to be healthy and breathing, and able to laugh and smile and LIVE.

He is so sweet, everyone who has met him falls in love with him. WHY would this happen to him? And now we have to try and decide what to do. No one should face the kinds of decisions we are facing. I am so mad at God. If he wanted Jack, why didn't he just take him? Why make him suffer, why make us all suffer. Then I think, maybe he doesn't want him, maybe he wants him to live his whole life like this.

Then I think, really, he did try to take him, time and time again. Jack has never taken a breath on his own. We are the ones who've kept him here. Maybe God is mad at me, I don't know. I just want what's best for Jack and today, I honestly have no idea what that is.

I just want to spend every moment with him. I want to see his little face without a tube or tape on it. I want to hug him without worrying I'm going to knock his tube out. I want I want I want.

I want to go back.

I keep staring at a picture PJ took during the babies' delivery. I never really looked at them, because they're kind of disgusting and I didn't really need to see my insides. But I noticed there is one of Jack, just as the doctors are pulling him out... he has nothing on his little face. His umbilical cord is still attached. It is the last moment before anyone knew anything was wrong, even the doctors. The last moment before everything changed forever. I want to go back and feel that moment again, have him whole and a part of me and perfect, even if just for that moment.

But I can't. All we can do is go forward. Keep going, for Jack and Katie and Charlotte. Maybe keep hoping for that miracle, though it hurts too much lately to hope anymore. Keep loving Jack as much and as hard as we can.



115 comments:

Amber said...

My heart breaks for you. No one should have to be faced with this sort of decision. Your family and Jack and in my prayers.

Anonymous said...

Megan,

I wish there was something I could say to comfort you. My heart is broken for you. Please know that you are all in my prayers, always. (((HUGS)))

Michelle

dale594 said...

I am sending you and Jack and your family huge prayers and lots of love. My heart really hurts reading this and I cannot imagine how you must hurt. All 3 of your babies are so lucky to have a mother who feels love so deeply for them all.

Anonymous said...

My heart is broken for you and your family. Just keeping loving your little boy more and more each day. As always, you are all still in my prayers.

Natalie042205

Anonymous said...

We continue to keep you all in our thoughts. You are all loved.

Amy said...

He is such a beautiful baby. It just isn't fair. I am so sorry that you have you go through this.

Anonymous said...

Still sending lots of prayers, hope and faith. My heart breaks for you guys. You deserve a miracle and I hope you get it.

Anonymous said...

I am so sorry Megan. I wish I could say or do something to take all the pain away. Please know your family is in my prayers.

Nicole (Nikkid330)

Anonymous said...

I'm so sorry you are going through this. I will keep praying for a miracle for little Jack.

Anonymous said...

I am so sorry that Jack and you and your family have to go through this. I can't imagine the pain you are feeling as his mother.
Please know that Jack and your family is in our thoughts and prayers.
Christine76

Anonymous said...

My heart is breaking for you, PJ, & your whole family. You are all in my prayers everyday and espically Jack. You will always be in my prayers and you deserve a miracle more then anyone. I wish I could take all your pain away. I am sending you tons of prayers and a {{hug}} too!

Anonymous said...

I'm not in your shoes but I can only begin to imagine your pain. I'm still praying for a miracle for your Jack! We are all in love w/ his little face, tube and all.

Gillian said...

Oh Megan, this is so unfair.. to say my heart is breaking for you is an understatement. You are right, NO parent should be faced with decisions you are.. and I wish you nothing but strength to get through this, and continue to offer up my thoughts and vibes to you, the girls and PJ.

As always, if there is anything you need..

Kristen said...

There are no words right now that will make any of this any easier. Don't give up, as hard as it seems, just don't! I am praying for your family- God BLESS you all and you are by far the definition of true love and motherhood.
Always praying and thinking of you!
Kristen (Kristen81603)

Anonymous said...

I have the biggest lump in my throat & I am totally heartbroken for you and your family. ughhh...megan I cannot imagine what you are going thru. I wish you all of the strength & renewed faith that you will need in the minutes, hours, days, weeks, months and years to come. Big, huge, hugs coming your way! :) Angela (&Frank)

Anonymous said...

I never understood why God would make bad things happen either. I just don't understand. My heart breaks for you. I'm so sorry. There are no words. Still praying for a miracle.

Anonymous said...

Megan, There are no words that I can say to let you know what I feel right now. I just want you to know that you and PJ and children are in our prayers and thoughts always. I am so sorry you are going through this right now it is so unfair. God bless you and your family.
nicole(mikeandnicole05)

Anonymous said...

My heart hurts so bad for you Megan.

I wish I could take all of your and your families pain away.

I am still praying for a Christmas miracle. I will keep having hope you for now that you have lost yours, I will be here to do exactly what you asked of us.

I hope you and your family have a wonderful Christmas. I am so sorry.

Delilah said...

I am so sorry that you all have to go through this. I am immeasurably sad for you all. I will continue to think of you and your family. You are a strong woman, I hope you know that.

Freya said...

There's nothing that anyone can say to make it better, but your whole family is in my thoughts today and everyday. Know that no matter what, you have made all the difference in Jack's life. If every child had a mother as loving and caring as you this world would be a very different place.

-Freya (Fall2004Bride2B)

Erica said...

I'm crying with you right now. This is so unfair, just completely, utterly unfair. Your faith is being more then tested... it's being stretched beyond it's tangible limits. I can't even fathom how this is even possible. Jack knows you love him. I'm still praying for your miracle.

Millicent said...

I am still praying hard for Jack. My heart is breaking for you.

Anonymous said...

Please don't give up hope, even when it seems impossible. You have a bigger support team behind you then what you will ever know.
Even tho it is hard to understand, God has to have a reason, there just has to be one. I must admit tho, I would probably feel mad at God and hopeless just like you. When you feel you no longer have the faith to keep going, you have so many people pulling for little Jack and your family. We will keep the faith going for you.
Please let Jack know that he has a HUGE support team and that we all have just fallen in love with him, just through your words. Everyone can tell you love him beyond words, just by the way you write about him. He is lucky to have such a wonderful family.

Tammy said...

I came across your blog from another one and your story touched my heart.
Your family and Jack will be in my thoughts and prayers.

Anonymous said...

My heart breaks for you.

Anonymous said...

I am sitting here crying with you. No one should have to go through what you and your family are dealing with. My heart is breaking for you and PJ and little Jack. I am praying for a miracle. You are an incredibly strong woman. God bless you and your family.

Jennifer said...

Megan, My heart breaks for you. No parent should ever have to go through this. You and your family are in my prayers. I pray a little miracle for Jack. Be strong. You are an amazing mother and your children are so lucky to have you and PJ in their lives.

karen said...

Megan,

My heart is breaking for you. Jack is such a beautiful baby. Your family is in my prayers.

Anonymous said...

Megan - My heart goes out to you. I think of you and Jack often. This is so unfair. No mother should ever have to go through this - especially not one who loves her baby as much as you love Jack. Jack is such a precious little boy who is loved by so many.

My Christmas wish is that Jack gets his Christmas Miracle. I will keep praying for that.

Ariella said...

I wish there was something I could say to lessen your pain but there aren't words that do that. I will pray for Jack and your family, that you have the strength to get through this.

Anonymous said...

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,

“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”



I am sending prayers and hugs always!

-Amy
ames143@hotmail.com

Anonymous said...

I don't understand why Jack or anyone suffers during their lifetime. I can't find the words to say and I feel I am inadequate in trying to comfort you because I don't know what you are feeling. I have erased my message twice because I don't know how to say what I am wanting to say to you. All I can do is pray.

Amanda said...

I don't know you personally, but I posted once before and I've been reading your blog. Recently, I, too, had to make the decision to take one of my triplets off the vent and let him go. I understand how you're feeling and am here if you need to 'talk' - amandayussman@aol.com.

Anonymous said...

My prayers go with you always...Try not to be mad a God..he has given you a special task...he only chooses those He feels can handle it...Jack will be in God's hands and your are his advocate...no one likes to see any child suffer let alone their own so perhaps you can start people thinking about what can be done to find out what causes this and what can be done to find a cure...you have the skills...

Sonia - beachbrat said...

Megan,

Many prayers for all of you.

NoahAndZach'sMom said...

I am still praying and prayinf for your Christmas miracle. The love that you have for your son is truly an inspiration to all mothers. Hugs to you and please kiss little Jack from all of the Nesties.

NoahAndZach'sMom said...

I am still praying and prayinf for your Christmas miracle. The love that you have for your son is truly an inspiration to all mothers. Hugs to you and please kiss little Jack from all of the Nesties.

Sommer said...

Im so sorry you have to go through this! As a mom i cant imagine what i would do in your situation. Its absolutely heartbreaking. Im sorry.
((HUGS))

Anna said...

I'm so sorry Megan. I don't even know what to say. Please know that so many people are pulling for little Jack. He's in my prayers (as well as his sisters) everyday.

christine said...

Megan - I am so, so sorry your family is going through this. I will continue to pray for a miracle for Jack. He is such a sweet little boy my heart just aches and breaks for you. I have no other words except may God bless and watch over you all.

Christine

Anonymous said...

Megan-

During the last few months of our pregnancies I followed your story since we were only a few weeks apart. Once you had your babies I got so excited because my time was coming soon but once I got your bad news and I delivered 3 healthy babies I didnt know what to say to you. I keep reading your blog every few days and sit here with tears pouring down my face because I feel guilty that I got blessed with 3 healthy children and here you are dealing with this. God works in strange ways and hopefully he has a better plan for Jack in the near future just keep praying and staying strong because just think he answered our prayers by blessing each of us with 3 beautiful children. I give you lots of credit for staying so strong for your little ones because I dont know how I would handle your situation without breaking down. All of you are in my prayers and try to make the best out of Christmas :)

HUGS From a fellow Nestie Cheryl

st.thomasbride2

Anonymous said...

Megan,
My heart is breaking for you and PJ. No one should ever be faced with this. I continue to pray for Jack and your family. (((HUGS)))
Jessica (Dibsgirl)

pam said...

You and Jack and everyone in your family are in my thoughts. My heart aches for you, for all of you, for having to deal with this. No one should have to, I'm just so sorry.

Anonymous said...

Words cannot express the sorrow I am feeling for you guys. I will continue to pray and hope for jack to be healed.

Kimberly and the GA Guinn Trips
www.guinnfamilyhome.com

Anonymous said...

There are no words, only prayers and love.

Anonymous said...

I have no words for you Megan. My heart is broken for you as I sit here in a puddle of tears. I thought of you all weekend, hoping for a good update. My prayes are with you and your beautiful family. Love to you all,
CT Knottie Jenn

Anonymous said...

Megan-
I am so sorry that your family is going though this very difficult time. Your whole family is in my thoughts and prayers. I read your words and tears come to my eyes. Try to keep the faith for Jack's sake. I know the thoughts are overwhelming to take a baby home on a vent, but if you want to talk about it. It is possible. I can name multiple children that are home and thriving and living and smiling. Even if not seen on the face, you can see the smiling in their eyes and in their heart. Many hugs and vibes. e-mail if you would like. pigglet46@yahoo.com.
Please have a very Merry Christmas.
Amy (zorahangels)

Crystal said...

I am so sorry you are going through this. My heart hurts for you. This is so unfair. You and your entire family is in my thoughts and prayers.

Anonymous said...

We are praying for a Christmas miracle for you. I think of you so often and wish there was so much more than thoughts and prayers that we can offer.

Denise
ladyredlight

Anonymous said...

My heart is breaking for you Megan. I wish there was so much more I can do or say for you. I will continue to pray for little Jack and keep you all in my thoughts.

Katie

Alicia said...

megan,
there are no words, i am so sorry you are going through this. Like you said no one should have to fac this, esp a wonderful family likes yours. The only thing i can do is continue to keep your family in my thoughts and prayers.

Anonymous said...

I am so very sorry you are going through this. My heart is breaking right now for you. I pray for your family and little Jack. I pray for you, you are an amazing Mom.

Amy said...

I am still praying for your family. It SUCKS that you might have to be faced with a horrible decision.

My heart goes out to you and your family.

Linda said...

My heart is broken for you Megan. I pray you find peace and that Jack is comfortable. I'm so very sorry.

Anonymous said...

I'm so sorry Megan. You, PJ, Jack, Katie, and Charlotte are all in our prayers.

Laura (penguingrrl), Mike, and Julia

Anonymous said...

Jack,
I have never met you, but I already know alot about you! What an absolutely amazing boy you must be to have God use you to touch people's hearts from before you were born! Jack, we hear that God is good all the time, but on this earth, things happen to us that don't make us feel very "warm and fuzzy". What you are going through fits that description.

I have learned alot about God in the last 10 years. My daughter Emily was born and we said goodbye very soon after. I couldn't understand and sought to find some answer. What I found was that in the past 10 years, I have been faced with the opportunity to help an extraordinary number of my friends walk that road. I couldn't have that kind of understanding without going through it myself. I now know that Emily had fulfilled her entire life's purpose in 2 hours of life. It seems unfair to me because I dreamed of a long life for her, but God's ways are not ours. I remember not being able to pray except to say "I know You are in control, but I don't get any of this". He understands. We are all here until our purpose is fulfilled and you, my sweet friend, are still fulfilling yours. But, if you run to Jesus anytime soon, it will prove that you are an extraordinary, amazing, unbelievable, life-changing, supernatural boy that had finished his job here while all of us are left to keep on, keepin' on. God will not leave you or your family and will give you each day that was written for you from the start.

Tell your mom that we're here to listen anytime, everyday and even to vent!! Erin, bline@mchsi.com

jackandmasonsmom said...

No parent should EVER have to go through what you and PJ are going through. My heart is breaking for you both and I don't even know you, I have just read your blog. You, PJ, Jack and the rest of your family are in my thoughts and prayers.

marree27 said...

i'm so sorry for what you and your family are going through. My prayers are with all of you.

Maria

Anonymous said...

Oh God Megan I am so sorry. This isnt fair. None of it is. No one should ever have to feel the pain of losing a child. You are in my prayers and your entire family is in my thoughts over these next few days. I wish there was something I could do or say to make it all better

Nancy said...

Oh Megan...I'm sorry you are all going through this. No one should ever have go through something like this. My prayers are with you & your beautiful family.
Take care of yourselves.
Nancy (nancy814 from the nest)

mish2378 said...

I am keeping you in my prayers

Anonymous said...

I know that nothing can make what you are going through easier, but know that you and your family are in the thoughts of many people. I truly hope for the best for your family.

C said...

I am keeping you in my prayers.

Cassie said...

Hi. I don't know you, but I came across your blog on theknot.com. I just wanted to tell you that you and your family will be in my thoughts and prayers. I read that you're questioning things a lot right now and thinking God is mad at you or trying to make you and your son suffer. That's not how it is at all. God loves you and Jack so incredibly much. This may be something that has to happen in order for something good to come about. He might be trying to teach you something, or show you something, or bring you closer to Him. Just trust in God and know that whatever He's doing, it's for a good reason and you may not see it right now, but you will later. Also, my brother was born with cancer. He also had a really major heart problem. The doctors told my parents that he would probably be paralyzed, would never walk, would never be potty trained, etc. And now he's a completely normal and healthy 21 year old. Things can change...just keep praying and keep trusting in God. You never know what He has in store for you. Hugs to you and your beautiful children.

Liz said...

Megan, I am so sorry. I can't imagine that God is mad at you & I don't think it's possible... You & PJ are wonderful people & wonderful parents. I don't know why babies ever get sick, it doesn't seem fair. I am praying for Jack & for your family. I think about you guys so often.

xo
Liz

Anonymous said...

Amber said it best, "My heart breaks for you". The only thing I can say is that God brought Jack into the world so you can meet him, love him, and maybe that is all what he wanted for the little guy. My husband and I are praying for you and your family, and for baby Jack. No matter what happens, Jack will know you love him dearly!
Meghann and Bruce T.

tbonegrl said...

Megan and PJ, my heart breaks for you as well. I am praying still for you and that you have some peace for Jack soon...peace towards a plan of action. God bless you and know that you are being thought about and prayed for all around the world.

Meghan
tbonegrl from the nest

Patyrish said...

I wish I had your email, I have SO many things to say, but just no words if that makes any sense at all.

I understand your feelings but only to a point, I havent had to decide on the whole trach/ventilator issue. My daughter would be dead without the tube in her tummy. I hate the thing and love it at the same time. She can't live without it and we have just gotten used to it over the last three years.

I understand your thoughts and feelings on the trach/vent. I don't know that I could put Makily through that.

IT IS INCREDIBLY UNFAIR THAT YOU AND PJ HAVE TO MAKE THESE DECISIONS.

For a year after my daughter was born I hated everyone and everything. The outlook they gave us for her was close to what they have said about sweet Jack minus the vent/trach (which I know is HUGE) I can REALLY relate to your feelings of anger and sadness. The ache for your baby to do all the simple things that you dreamed of them doing. Eating, breathing, smiling, laughing, talking running. Things that most people take for granted. The loss of that is BEYOND devastating. The thought of your child being retarded is just....well there are NO WORDS, it's just a nightmare.


The longing to "go back" is so strong. Looking at my
pregnancy photos is too hard for me, I had NO CLUE how hard things could be in life. I ACHED to go back and be naive like that again.

Once something like this happens to you, you are forever changed. Jack has made you a different person, your life will never be the same but I KNOW you will be a better person because of him. He has already made you stronger.

I am still and will continue to pray for your family. Jack is a gorgeous baby boy, he truly is an angel on earth. His pictures touch me deeply, the strength he has shown through it all is astounding.

God Bless Jack

tbonegrl said...

Just wanted to make sure you'd seen this: They have support groups, and might be able to give you even more information:

http://www.moebiussyndrome.com/

Dawn said...

There are no words. My heart is breaking for you. Jack is such a special baby. Your family is in my prayers. I wish I could give you the strengh to help make this right.

Anonymous said...

Megan, PJ, Katie, Charlotte, and Jack,

My family & I are all praying for you. Please stay united as a family. Family is the most important thing and God will get you through it. He really will. It's completely unfair, and we will never understand, but please know that you are not alone.

Andrea (pomps)

Anonymous said...

I know there is nothing anyone can say that will take away your pain. Words are inadequate to express how sorry I am. I will continue to pray for you and your family, especially your sweet Jack. I will especially pray for peace for you.
Know that you have done an amazing job of being the best mother Jack (and katie and Charlotte) could possibly have. He is truly blessed to have you in his life.

Anonymous said...

I've been searching for the "right" thing to say....but I've realized there is no "right" thing to say. So, I'm finally posting to just let you know my heart completely broke when I read this entry. You are faced with decisions NO ONE should be faced with. Please know that you, Jack, and your family are in my thoughts and prayers daily..I am praying for a miracle for Jack. Continue to stay as strong as you can for your little girls. (((Hugs)))

Jackie (ckj520)

Anonymous said...

You are all in my prayers..especially Jack. Just don't give up your faith in God....he's the only one that can help you.

Nestie MaryannC

Anonymous said...

A person is a person....no matter how small. -Dr Seuss.

It is amazing to think a small baby, one who can't walk or talk.....could touch hundreds, no...thousands of people in 8 short weeks. I only wish to accomplish that in my life! Perhaps Jack is only meant to provide blessings for us for a short time. Sometimes the hardest decisions take the most love.
thank you for having a baby who have touched so many!
We love you Jack!
-Kat

Anonymous said...

I am so sorry for your pain. I have been following the blog for a while....awwwed when you gave birth, laughed at the elf pictures. All this time, I kept the IF blogs I read to myself....I never shared them with DH. I read the first couple of paragraphs on my own, and then began reading to my husband. And we cried...for you, for PJ, for your babies. For your family and friends. Be strong, as we will all continue to stand by you in our thoughts and prayers, although I'm not sure what to pray for. (((HUGS)))

Anonymous said...

I am crying for you and your family... you all continue to be in my thoughts and prayers.
Marissa (rissainthesky)

Anonymous said...

I don't know you or your family, however I feel as though I do. I can't imagine how hard this must be. I believe God gave you Jack for a reason, he placed him here on this earth to touch lives. Lives you may not even no he touched. God is not mad at you, hard as it may seem this is all happening for a reason, a reason you may never know. Jack is a very precious gift from God. My prayers go out to you and your family daily. God Bless you all!!

Gwen (ilovea2 from the Nest) said...

I am so terribly sorry. I've been reading for months, and I'm brokenhearted that it has come to this. I know that this cannot possibly be much comfort, but know that I (although) a total stranger, am thinking of you every single day lately, and my heart hurts for you. I can't imagine facing this, I look at my twin girls every day and imagine if this had happened to us. I hope for you to have the strength to face the coming months, and some peace in the new year.

Anonymous said...

Jack is beautiful! Please don't give up hope. There is always hope! Keep praying for a miracle for your precious baby boy! My son, Jayden has been through a lot too. He will be 3 on the 30th. He has so many health problems but he is here and he is mine and he has come so far from pure love. you can read about him and see how far we have come. His website is www.caringbridge.org/visit/jayden

Love,

Vicki Fields (Jayden's Mommy)

Anonymous said...

Megan I am so sorry you and PJ have to go through this. Jack, Katie, Charlotte and you and PJ are in our hearts and minds. I always thought you were a strong woman before this all, now I am sure of it. Please let me know if I can help in any way.
Rachel (raesue)

Hyperfertile Infertile said...

Oh, Megan. I wish there was something I could say or do to help. I wish that Jack wasn't facing any of this. I wish there was some sort of answer as to why that made sense to any of us.

I know that none of us can help right now, no matter what we say. Just know that there are so many prayers being said for you, PJ, Jack, Katie, and Charlotte. We're all thinking of you.

Robin said...

Megan I wish I could take the hurt and pain and everything bad away from you and your family. I am thinking of you all during this holiday season. *hugs*
Robin

CRS said...

Megan,

I have no words, only tears. You are in my thoughts and prayers.

-smallbutfeisty

Anonymous said...

My heart is breaking for you all right now. This is something no parent should EVER have to go through. I can't even imagine your heartache right now. I will continue to pray for Jack and for the strength of both you and PJ. Jack is one lucky little boy - he has been blessed with wonderful parents like you and he knows how much love and prayers you are sending him. God Bless you all.

Kathy

Jess P said...

Megan,

I am so sorry you are going through this. You are right, no parent should be faced with the decision you are faced with. I am praying for you and your family, and for a miracle for your precious little boy

Jess (nestie jessicaclare)

friend-sister-wife-mother said...

You are right, it is not fair. My heart breaks for your family. Try and keep the faith. Ps. Jack is SO darn adorable, I can't stand it!! (((HUGS)))
Heather

Anonymous said...

Megan,
I have a preemie in the NICU here in Ohio so I somewhat understand what you are going through, though not to the extent of what is happening with Jack. I pray for you guys all the time and continue to pray for a miracle. I, too, ask myself why God would do this to a beautiful, innocent child. I don't know if I will ever understand. Jack is an angel and I bet he has changed more peoples lives than you could imagine. Maybe he was sent here to do just that...to make each of us a better person just by knowing his story. I know I am a better person because of him. My family will pray, pray, pray. God Bless you all. Go Jack, YOU'RE A FIGHTER!!!!

inlove0924 said...

Megan,

I don't know what to say. I am so sorry you and your family is going through this. Stay strong.

Leona

Anonymous said...

Megan - Like many others said, I am just heartbroken for you. So many people, just like me, who have met you once or maybe even not at all, have been touched by your story and by Jack's courage and bravery. I pray every day for your family to find peace in this situation. With love, Lisa (Nestie ~LisaD~)

Anonymous said...

Bad things shouldn't happen to good people. Your family is in my thoughts and I wish you all the strength in the world to get through this, and for Jack to just be ok. Sending you love and lots of hugs.

dinkey said...

Megan...I am still praying for a miracle for Jack. He is always on my mind and so are your girls. I am so sorry you have to go through this. My heart is breaking and the tears are flowing...so many people are praying for your family.

julie said...

Thinking of you today and praying for Jack's Christmas miracle. May God bless your family.

Kim said...

I am SO sorry you or anyone has to deal with such pain. You and your family are in my prayers daily.

Blessings

carmeng said...

Megan, I wish I had words to comfort you and make Jack healthy. You are in my thoughts and prayers and will continue to hope for that miracle. I know it is easier said because I'm on the other side of the fence, but please continue to trust in God, He will always be there. Give him your frustrations, fears, anger and He will take care of you. I hope you find comfort soon and know that there are hundreds praying for your family.

You are in my thoughts today, Christmas. Make memories and always keep them close to your heart.

Linda said...

Oh Megan, my heart truly breaks for you guys! After all you went through to get this little guy HERE in the first place, and now to have to be faced with all of this . . . I wish I could do something, ANYTHING for you and for Jack. You are in my thoughts and prayers. God Bless you all, and Merry (I know this year's isn't very) Christmas.

Linda

Anonymous said...

FWIW, the brain is a remarkable organ and if he just needs some nerves to "pickup" his breathing functions perhaps it could be "re-routed" or is re-routing now as we speak since the vents are atleast moving his lungs and sending pulses to the brain. I am hoping for more options as he grows and lives and for his health so the doctors can do more for him.

Remember that getting a diagnosis is half the battle and NOW you can FINALLY start geting to helping him better. No doc wants him on a vent forever and they will give you great solutions to help your boy.

I hope one day your boy can come to live with you and his sisters even if it means a not-so-normal lifestyle.

NoahAndZach'sMom said...

I'm saying a special prayer today for your little Jack. I'm sure your best Christmas present ever would be for him to be well. I hope that someone up there is listening... Merry Christmas from a fellow Nestie.

Busted said...

I realize there is nothing I can say to ease the pain you are feeling, but I just wanted to say how terribly sorry I am for all that you are going through. I am thinking of Jack and your family this holiday season.

Anonymous said...

Megan I'm so so incredibly sorry to hear this. My heart breaks for you and Jack and your whole family. May you find strength and clarity in this difficult time...Jack is always in our prayers.

Allison (Allison711)

Gabbs said...

Megan,
I do not know what else to say except the fact that I pray for you and your family every single night.
~Gabbs (MrsGabbs4Ed)

Anonymous said...

My heart is breaking for you. I'm sending you all the vibes and prayers I've got right now.

Sarah
oct11bride03

Adrienne said...

My heart is breaking for you and PJ and your family. Please know that you are all in my prayers.
MrsAdrienneT

Kayla said...

Oh I am so sorry to hear this news. I hope that whatever decision you have to make brings some sort of peace to you someday. Whatever you do will be the right thing, just try to find it in yourself to have that hope again. This to shall pass and Jack will be free one way or another. I am sorry that you all have to go through this it is not fair, and I hope it gets better soon.

Jessica said...

You are a wonderful mother and person, Megan. I am sending as much prayer for Jack as I can.

Anonymous said...

I am so so sorry for the news about Jack and the terrible decision you are facing. Your whole family, and especially your sweet little boy, are in my prayers.

Anonymous said...

My praryers are with you and your family.

CRS said...

Megan, I so want to DO something to help. You guys pop into my head at least 3 or 4 times a day. Whenever that happens, I light a virtual candle for you... I wish I could do something more.
-smallbutfeisty

Anonymous said...

Megan,
I cannot think of one thing to say that would console you or PJ. Jack is in my prayers and always will be.
mrskimmied

Todd and Kristin said...

I heard of your blog from a fellow Nestie on the PL board & I just sat here and read every single post. I am smiling through my tears as I look at your babies and read such heartfelt words about your three beautiful children.

My younger brother has a form of Mobius, along with many other severe handicaps, all of which did not surface until he was 1 1/2. He was not expected to live past age six or so, and he is now 36. While I know his life has been a struggle, he is an amazing part of my heart - a part that NO one will ever have. I know that Jack holds that for you as well, but of course even stronger because he is your son.

Sorry for the long reply, but my heart and prayers are with you. Blessings to you all. ~ Nestie "kekis", Kristin from Dallas TX

Marie said...

I wish I could say something to make you feel better. My heart/prayers are with you and Jack. Hugs

Anonymous said...

Megan,
I wish I could find words of comfort for you. I pray for you and your family everyday... You cant lose your faith now, not when it has been so strong.... God gave you a very special baby that has taught hundreds of people in such a short time how to love, how to be kind and how to pray for others...I will continue to pray for all of you and I am so sorry that you have to go through this.
Gina

Anonymous said...

I am so, so, so very heartbroken for what you and your family are going through. I wish I could say something to make it all better, but I know I can't. I'll keep you all in my prayers.

Rena said...

My son was on a ventilator for 2 1/2 years. It took years but he is now a walking, talking miracle (with a little scar on his neck). I understand your pain and how devastating this is for you. But it's not an indication of how happy your son is or how okay things can be.

If you would like a parental perspective of the medical side of what you are dealing with, please don't hesitate to contact me and I would be more than happy to help.

Best wishes for all of you.

Rena
Rena6255@yahoo.com

Anonymous said...

There are children who live on vents with trachs and feeding tubes yet have very fulfilling lives with a wonderful quality of life as well. There are also families who would be thrilled to adopt a child with significant medical needs like ventilator dependence.
Please consider ALL your options while you are making decisions in Jack's best interest.