[LilBeesMum]

I didn't think we were going to have any more children, because my monster has a terminal illness. She has an expected life span of 5-10 years. I thought people were nuts for even wanting to have another after having such a sick baby....but three years after having Lily, here I am. I'm just hoping someone else knows what I'm going through!

[Ravado]

I do not but my heart goes out to you. I can not imagine the joy of having your child to love but the pain knowing the future.

[Caerus]

No kids at all here, but I wanted to extend a hug. I'm so terribly sorry you are dealing with your daughter having a terminal illness. Kids should just be immune to all the bad stuff in the world.

[LilBeesMum]

Thanks, ladies. It has been an incredible journey with her. I was just talking with one of my friends, and in a lot of ways, if I have a healthy baby this time, it will be like being a mom for the first time. She was in the hospital for the first week of her life, out for a week. Back in for a week and a half. Then she was in the hospital for 56 days when she turned 3 1/2 months old for open heart surgery. She had so many birth defects. (VSD, ASD, PDA, bicuspid aortic valve, PH, arachnoid cysts (brain), heterotopic gray matter cysts on the ventricles of her brain, dairy allergy, soy allergy, hypotonia) She was in heart failure up until surgery, so she slept ALL the time. I have no clue what its like to have a healthy baby.

With that being said, Monster is... Well, put it this way, looking at her, you'd have NO clue she was sick. We just finally got off oxygen at night. (She cycles - doesn't need it, needs it sometimes, needs it at night, needs it all the time...) She takes her medicine like a pro (Gives it to herself....all mommy has to do is fill the syringe up). She's a VERY happy, outgoing red-headed three year old.

She also desperately needs a sibling. LOL. She won't leave babies alone! Loves being around other kids, etc.

I'm very scared of her entering stage 4 while i'm pregnant, or when the new baby is very young....but having another child just FEELS right in more ways than one.

She truly is a blessing. She brings a smile to everyone's face, and she's an EXPERT at how to annoy the pants off of mommy. LOL

Ravado - One of the things that got me to thinking about having another one was something someone said to me once... When you have a child with a terminal illness, you don't know the true greatness of love. You know "love with fear" because every waking second is your heart filled with love, and absolute terror that your child won't wake up the next day. Wondering at every holiday if she'll be alive for the next one. To have a healthy baby is to experience 'love without fear'. I want that experience.

[*Anya*]

hugs mama. I don't have a child with a terminal illness. When I was pregnant 20 week U/S revealed that she had an anomaly (encephalocele) right away they put us in a meeting with a geneticist that gave us the odds of our child turning out "normal" and they were very low, we were both broken hearted and full of fear. They made me another appointment at a bigger hospital for a second opinion, it was a week away. That week was the hardest week of my life, I prayed for God to take my child if she'd have no quality of life. I felt horrible asking for that but I didn't know what to do. Everyone we spoke with offered to terminate the pregnancy, even the receptionist. We refused, we couldn't. Second opinion appointment showed that the anomaly was rather small and there was a good chance that after surgery after birth she'd be fine. I think the rest of my pregnancy I was sort of detached, I did bond and I loved my baby and I knew I'd love her whatever the outcome, but I think the fear of the unknown kept me from fully bonding. After she was born I wasn't really able to hold her, just a few seconds before she went to the nicu, and within 4 hours she was in surgery. Now looking back I wonder how is it that I wasn't a total mess while she was in surgery, and the only way I can explain it is that I knew it had to happen all along, I've conditioned myself to think that that's the way it's suppose to be. Anyways I don't mean to hijack your post, and I know you situation is entirely different, but I am familiar with the love with fear that you speak of. Even though she is 3.5 years old it still creeps up on me. Hugs to you and your precious baby girl.

[Ravado]

Ravado - One of the things that got me to thinking about having another one was something someone said to me once... When you have a child with a terminal illness, you don't know the true greatness of love. You know "love with fear" because every waking second is your heart filled with love, and absolute terror that your child won't wake up the next day. Wondering at every holiday if she'll be alive for the next one. To have a healthy baby is to experience 'love without fear'. I want that experience.

This made me cry. You are probably the strongest person I know just by this statement. I wish you nothing but the best for a quick and healthy BFP and the ability to cherish the time you have with your DD without fear as much as possible.

[LilBeesMum]

Originally Posted by *Anya*

hugs mama. I don't have a child with a terminal illness. When I was pregnant 20 week U/S revealed that she had an anomaly (encephalocele) right away they put us in a meeting with a geneticist that gave us the odds of our child turning out "normal" and they were very low, we were both broken hearted and full of fear. They made me another appointment at a bigger hospital for a second opinion, it was a week away. That week was the hardest week of my life, I prayed for God to take my child if she'd have no quality of life. I felt horrible asking for that but I didn't know what to do. Everyone we spoke with offered to terminate the pregnancy, even the receptionist. We refused, we couldn't. Second opinion appointment showed that the anomaly was rather small and there was a good chance that after surgery after birth she'd be fine. I think the rest of my pregnancy I was sort of detached, I did bond and I loved my baby and I knew I'd love her whatever the outcome, but I think the fear of the unknown kept me from fully bonding. After she was born I wasn't really able to hold her, just a few seconds before she went to the nicu, and within 4 hours she was in surgery. Now looking back I wonder how is it that I wasn't a total mess while she was in surgery, and the only way I can explain it is that I knew it had to happen all along, I've conditioned myself to think that that's the way it's suppose to be. Anyways I don't mean to hijack your post, and I know you situation is entirely different, but I am familiar with the love with fear that you speak of. Even though she is 3.5 years old it still creeps up on me. Hugs to you and your precious baby girl.

Anya: That would have been so hard. I don't know how i would have handled going through the pregnancy knowing that. I went through the pregnancy with Monster thinking she would be fine. None of the multiple ultrasounds detected ANYTHING wrong. She was in distress during birth, but I still managed to deliver her fine. We noticed a little bit later that she started turning dark purple when she cried. It was 7:30 that night (I had her at 1:12 in the morning) when the pedi did a check on her, and announced she had a hole in her heart...and everything went downhill from there.

I wanted to hurt everyone who had told me she was going to be fine.

Hugs to you. You definitely do know what love with fear is like. I'm glad the surgery went well!

[LilBeesMum]

Wish I could figure out how to post a picture in here!

Ravado: Sorry it made you cry! Trust me, we (DH and I) both work on treasuring each moment. He deals with easier than I do. I wear a bracelet that has "Live like she was dying on it". It helps me to remember to treasure every moment.

[LilBeesMum]

Here we go - this is monster on her 3rd birthday.

[lelila]

Lilbees - my child is healthy and for that I'm grateful every day. But from the day I found out I was expecting I worried it would not be the case and I still do. My OB told me I was a bit old to be having a first child and I was at risk for all sorts of horrible genetic disorders and so I wittled away the hours of my pregnancy with fears of what could be. And once he was born, every lump, spot, shallow breath, hiccup, scratch and so on plagued me with all sorts of terrible thoughts of what could be ailing him.

As a parent, you never stop worrying about your child, no matter how healthy they are. Love without fear is a beautiful phrase, but no parent lives that way, not these days. My heart breaks for you - being given the most precious gift in this world, knowing it's not to last. I think I'd go mad if I were living your life.

But here's hope for you and for all parents and is what keeps me going. My brother was born with Down Syndrome in the early 60's. He was born with a hole in his heart as well. My parents were told he had 3 months to live even with surgery and my parents elected not to have the surgery. When he was 6 months old, the doctors told my parents he would not live to a yr old. When he was 3 years old, the doctors told my parents that a growth spurt would kill him. When he was 9 the doctors told my parents that the hormones that surge through his body during adolescence would kill him, and don't except him to live past puberty. When he was 18 my parents were told that my brother was nearing the end of his life, as the hormones that were keeping him growing were no longer being produced.

My brother is now almost 50.

Never give up hope.

Leia

[LilBeesMum]

Lelila - You're right. No parent ever doesn't worry about their child. I would just love to have the 'normal' kind of worries. You know, ear ache, colds, etc. Not "Oh crap, she's had a cold for 7 days. We need to get her started on antibiotics, chest x-ray, etc. Does she need admitted? How are her oxygen sats? Should I bump her up from .5 liters? *call the doctor* She's on 4 liters of oxygen to maintain 90 percent 02 sats. What do I need to do? *start chest percussions, administer inhalers, recheck sats every 15 minutes*

That is a wonderful thing to hear about your brother. There is a small chance that Lily could live a while. We cling to that. However, the disease that she has never just stays in one stage. It will get worse. At some point we'll have to face possibility of heart and/or lung transplant, in hopes that it will give her a few more years.

Don't get the idea that I do nothing but mope, though! We have some wonderful times!

[Branduxa]

Wow. Just wanted to give you a and say thanks for sharing your story. It is inspirational and I pray I never have to go through what you are going through. God bless you and your family, especially your little girl!

[LilBeesMum]

[MAS1313]

This post made me cry. Your courage and outlook on life is beautiful. I just want to give you, your DH and your daughter a great BIG HUG!

I have a 5 year old DD with chronic asthma....so not the same as you. We deal with different worries than "normal" in regards to have you taken your inhalers today, what about your allergy meds...teaching all the teachers how to handle her, not being allowed to go to friends houses b/c of their pets, do we up her steroids, etc. She is set off by allergies, excercise and any little cold goes straight to pnemonia. That alone is scary enough and I can NOT imagine your daily struggles.

My heart goes out to you and may god bless you with a wonderful healthy sibling for your entire family to enjoy!

[FishermansWife4]

I want to start by saying hello. I'm Amber. What do you like to be called?
Welcome to the TTC forum. We're all different here but yet all the same. I'm going to over step boundaries with what I say but ask anyone, I am who I am and I try hard not to filter myself with meaningless words that I don't believe.

Maybe God said to you, "For now my daughter, take care of this child. She'll be coming home to me, but I feel the best place for her to live her life on Earth is with you." You're beautiful, strong, resiliant, couragous and amazing. Dear momma, don't cry. I know the road is hard, but perhaps he'll bless you with a child that will live it's long life here on Earth. I pray to Him that He does. You seem so beautiful inside. I can't imagine Him turning a deaf ear.

The reason I say this is because I've loved and continue to love with fear. My story is different than yours and not so severe but I do still live and love my children with fear. I was in an abusive relationship while I was pregnant with my eldest dd. She was born 2# 15oz at 29 weeks gestation. It was touch and go for the first month. The month turned out to be alright and she came home around a month and a half after being born. She lived on an apnea/bradicardia machine for the first year of her life and she was very prone to infection and illness. She's now going to be 6 in June and she makes me cry with how beautiful she is inside and out.
My son (I waited 4 years and 16 days for my son, mind you) has severe asthma. It effects my daily living. I give him medication. I alter the way I live. We can't have pets because of his asthma. He goes to the hospital about 4 times a year because he can't breathe. It kills me inside. All I wanted was my son, I was told my first two were boys. I don't know if one day he'll have an asthma attack and not ever catch his breath. Yes, I know what it's like to love in fear. It just makes me love him and enjoy his company that much more. I admit, I take it for granted some days that he'll always be around, but more often than not, I'm scared. This is the first time I've ever admitted it.

I want you to know you're not alone. Our children may not have the same illnesses or issues, but we all, as mothers in my opinion, live and love with some fear, probably not as much as a mother with a terminally ill child, but some fear none the less. We wouldn't be good mothers if we didn't
I'm always just a pm away if you want to talk, vent, laugh, whatever. I'm here. Post to the board!!! These lovely ladies are beautiful and more than willing to offer a ear or a kind word.

This isn't just a ttc forum, this is a support group. I count myself blessed to have these ladies, and I hope one day you do too. Welcome, my new sister. I pray everything goes well for you and your family and your stay here is short and sweet <3

[iamkc]

I just happened to see this post and wanted to reply. First, you are amazingly strong. I love that you live in the moment with your daughter, love her as she is living, and continue to live and thrive yourself. Many would shut down, and I wouldn't blame them. I can't see the picture of your wee one, but I know that children like that have some inner light that shines brighter than the sun. She must be beautiful.

I also wanted to say that you are NOT alone (or crazy) in wanting another! We tried for a couple of years to get pregnant with our first son (now 5 1/2). Miscarriages aplenty before he came! I almost died after I had him, though, and doctors are still debating some of my issues. Imagine my surprise when we were preventing but managed to get pregnant with our second right before our first turned one! I had trouble throughout the pregnancy, but the docs wouldn't listen. I'll spare details, but my second was born via emergency c-section at 41 weeks. He was in the NICU, super-tiny, various health issues. We lived at the hospital for the first couple of years. He had several surgeries, several treatments, and we almost lost him a few times. Every time we would get a handle on one thing, a new, potentially fatal/debilitating condition would present itself. He will be 4 at the end of this month. We're fairly certain that we have moved past terminal with his conditions (treatments and surgeries have improved DRAMATICALLY in the past few years). Our home looks like a medical facility with all the machines and supplies. If you saw him out in public with us, you would never know, though!

My husband decided that he didn't want any more. Having the second is like having 2-3 kids. But it's part of the routine now. Our first has a few issues, but they're all completely under control. Still, DH pointed out often that having our 2 was like having 4. He's sort of right. He was also terrified that we did something wrong that may have caused our son's issues. We didn't, but you can't shake that feeling. Now, having just gotten rid of all our baby stuff, we find ourselves with a surprise 3rd on the way. I just found out, and while I have no idea how this will go, I was THRILLED (and terrified). It took all day to try to tell DH, assuming that he would fall apart. I had to tell him in a crazy way, and he just smiled and kissed me and told me how excited he is. He didn't want to let himself wish for that. He didn't want me to have to go through some of the things that I went through during and after the pregnancies. But as soon as he found out that there was a high possibility that we were going to be adding another, regardless of all that, he said, "Why didn't we try this before?" I think that the excitement and potential override the heartache and "what ifs" from our miscarriages and second son. He wanted another in spite of everything, but was just too scared to think about it much.

Jeeeeeeez. To the point: you're not crazy! It definitely won't seem crazy or wrong once you have that BFP staring you in the face and the baby in your arms! Many hugs, and good luck TTC!

[LilBeesMum]

Thanks so much, Iamkc! I'm glad to see evidence that I'm not the only one out there! I'm glad your son is doing so much better =)

Originally Posted by FishermansWife4

Maybe God said to you, "For now my daughter, take care of this child. She'll be coming home to me, but I feel the best place for her to live her life on Earth is with you." You're beautiful, strong, resiliant, couragous and amazing. Dear momma, don't cry. I know the road is hard, but perhaps he'll bless you with a child that will live it's long life here on Earth. I pray to Him that He does. You seem so beautiful inside. I can't imagine Him turning a deaf ear.
scared. This is the first time I've ever admitted it.

I want you to know you're not alone. Our children may not have the same illnesses or issues, but we all, as mothers in my opinion, live and love with some fear, probably not as much as a mother with a terminally ill child, but some fear none the less. We wouldn't be good mothers if we didn't
I'm always just a pm away if you want to talk, vent, laugh, whatever. I'm here. Post to the board!!! These lovely ladies are beautiful and more than willing to offer a ear or a kind word.

This isn't just a ttc forum, this is a support group. I count myself blessed to have these ladies, and I hope one day you do too. Welcome, my new sister. I pray everything goes well for you and your family and your stay here is short and sweet <3

You can call me Dianna =)

I have been told by more than one person that Lily's light is so bright that maybe she is only meant to be on earth for a short time. Long enough to change a few people's lives before she has to go home. It breaks my heart, but when she dies, I know she'll no longer be in pain! So I will try to celebrate the time she had when that comes to pass.

I love the board in the short time I've been on it. =) and Thanks

[LilBeesMum]

You ladies seem to be such a wonderful group! I'm so glad I found you!!

[Caerus]

I can't see the pic you posted, but is that her in your signature?

[LilBeesMum]

Yes, Caerus =)

IF you scroll back up, you should be able to see it now =)