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We can't send him back...My worst nightmare has happened - Page 3

post #41 of 96
post #42 of 96
Quote:
Originally Posted by ksera05 View Post


You can't send him back...but in the future, I promise you will be glad he is here.

:

It really well get better mama, I promise. And in the meantime you have us all to lean on, we have all been where you are now and we know how hard it is. Maybe the hospital social worker might be able to find a support group for mamas of special needs kiddos in your town, maybe even one for mamas with little ones that have DS. As fabulous as all the ladies are here, and I truly mean they are fantabulous, sometimes it really helps a lot to be able to have someone IRL who knows what you are going though and can physically be by your side when the going gets tough.
post #43 of 96
Ahhh....your post takes me back about 8 years ago. My homebirth plans morphed into a hospital birth after a month of bedrest, to a baby born a month early and with a gastro defect that needed prompt surgery. We learned he had Down syndrome within a day or two. It was the one diagnosis I had been quietly glad that my daughter with a spinal cord defect didn't have. I thought that I could handle physical issues in my kids, but not, not cognitive ones.

It's really, really hard to find your life and your plans changed like this. Your dh is right; your son is with you to stay, and your life and your family will not be the same. But remember that that doesn't mean that your life, and your family's life, can't be really, really good. You will, in time, find your way and regain some stability. You will find that the sun is still shining, and that is actually feels brighter and warmer for what you've been through. It's OK, and probably actually necessary, to grieve for what you're leaving behind; you had significant, important dreams and plans. But keep the faith that your son himself will show you new dreams and plans that will be as sweet as the old ones.

Gabriel and I had a heck of a time with breastfeeding at first, but he finally got very proficient at it, and went on to nurse for a good two years. Please feel free to email me or post here if you want or need to "talk" about nursing babies with Down syndrome. I may have some resources I can point you to.

I love his name, by the way .

Hugs, and be gentle with yourself and your emotions.

Joni and kids, incl. Gabriel, 8 (Down syn. and autism)
post #44 of 96
post #45 of 96
Hugs mama. I can't pretend to know what you are feeling. But we are here for you!! I keep trying to type things that end up not making sense. So I will just say, it is going to get better. Be easy on yourself and keep us updated!
post #46 of 96
Quote:
Originally Posted by jondee0 View Post
Ahhh....your post takes me back about 8 years ago. My homebirth plans morphed into a hospital birth after a month of bedrest, to a baby born a month early and with a gastro defect that needed prompt surgery. We learned he had Down syndrome within a day or two. It was the one diagnosis I had been quietly glad that my daughter with a spinal cord defect didn't have. I thought that I could handle physical issues in my kids, but not, not cognitive ones.

It's really, really hard to find your life and your plans changed like this. Your dh is right; your son is with you to stay, and your life and your family will not be the same. But remember that that doesn't mean that your life, and your family's life, can't be really, really good. You will, in time, find your way and regain some stability. You will find that the sun is still shining, and that is actually feels brighter and warmer for what you've been through. It's OK, and probably actually necessary, to grieve for what you're leaving behind; you had significant, important dreams and plans. But keep the faith that your son himself will show you new dreams and plans that will be as sweet as the old ones.

Gabriel and I had a heck of a time with breastfeeding at first, but he finally got very proficient at it, and went on to nurse for a good two years. Please feel free to email me or post here if you want or need to "talk" about nursing babies with Down syndrome. I may have some resources I can point you to.

I love his name, by the way .

Hugs, and be gentle with yourself and your emotions.

Joni and kids, incl. Gabriel, 8 (Down syn. and autism)

Yay Joni!, I tried to email this thread to you (from another board we share). I should have known you'd be on top of this. This Mama (Joni) really knows her stuff. She'll be an invaluable resource for you.
post #47 of 96
Just wanted to add to the hugs.

Your family and this journey are in my prayers, mama.
post #48 of 96
I'm so sorry you are going through this mama Feel free to vent anytime you need to. I also had a full term very sick baby, you can PM me anytime you want. I completely understand avoiding your DDC where all you'll hear about is healthy babies. I didn't want to see or hear about healthy babies either, these feelings you are having are completely normal. I've been keeping you in my thoughts.
post #49 of 96
Thinking of you and your family. It is a hard journey with many emotions...allowing yourself to feel these emotions is good.
post #50 of 96
hi. My son was born with some special needs too. He's tube fed and we are unable to breastfeed, so I pump for him. But it was a hard relationship to loose. They think my son had a mild stroke in utero very early on, but I guess they can't be sure, so it's just wait and see for us.

I also wanted to say that I have a sister with downs. She's 16. I've asked my mom recently (since I had a special needs kid, but in a different way) how hard was it to raise three normal kids and then one with downs. She said, "I have no idea what everyone means when they ask how hard was it, of all the kids she's been the easiest and has had less problems then all of you guys put together." My sister is in highschool, does sports, comes up with some rather artistic hairstyles, and is all around just fairly normal. I mean she has downs, but there's so much that she doesn't have. You know? And she has a great personality. I love spending the week at my parents house cause I get a break cause my sister will play with my three year old constantly. She's a great aunt.
She was born a little early and very small. She didn't have a suck, so my mom got a syringe and a little tube, and taped it to her pinky finger. She tuaght my sister how to suck doing that. and six weeks of hard work later, she breast fed her. I think she weaned at maybe 18 months.

I know that it's rough right now, but just hang on. All you have to do is survive right now. And let yourself mourn the loss of your "ideals."

Hugs
post #51 of 96
I cannot pretend to know how you feel mama... but I just wanted to say I'm thinking about you and your family.
post #52 of 96
I just wanted to give you a big hug too. While no one else is in your exact situation, many of us here can very much relate to how you are feeling. You are not alone. Hang in there and please continue to come here, and seek outside emotional support from family and professionals.

There will be more dark moments to come but undoubtedly there will be many more joyful, light-filled ones as well. This experience will shape you like nothing else ever could. You will grow as a mother, a wife, a person in ways you can not yet imagine. Just hang in there for now and do the best you can. Have grace and patience for yourself. You CAN do this.
post #53 of 96
I have no words :
post #54 of 96
Quote:
Originally Posted by jondee0 View Post
Ahhh....your post takes me back about 8 years ago. My homebirth plans morphed into a hospital birth after a month of bedrest, to a baby born a month early and with a gastro defect that needed prompt surgery. We learned he had Down syndrome within a day or two. It was the one diagnosis I had been quietly glad that my daughter with a spinal cord defect didn't have. I thought that I could handle physical issues in my kids, but not, not cognitive ones.

It's really, really hard to find your life and your plans changed like this. Your dh is right; your son is with you to stay, and your life and your family will not be the same. But remember that that doesn't mean that your life, and your family's life, can't be really, really good. You will, in time, find your way and regain some stability. You will find that the sun is still shining, and that is actually feels brighter and warmer for what you've been through. It's OK, and probably actually necessary, to grieve for what you're leaving behind; you had significant, important dreams and plans. But keep the faith that your son himself will show you new dreams and plans that will be as sweet as the old ones.

Gabriel and I had a heck of a time with breastfeeding at first, but he finally got very proficient at it, and went on to nurse for a good two years. Please feel free to email me or post here if you want or need to "talk" about nursing babies with Down syndrome. I may have some resources I can point you to.

I love his name, by the way .

Hugs, and be gentle with yourself and your emotions.

Joni and kids, incl. Gabriel, 8 (Down syn. and autism)
This is truly beautiful : Thank you for sharing your heart.
post #55 of 96
I am so sorry. I have not been exactly in your shoes - we went through realizing my daughter would be profoundly cognitively and physically disabled if she lived, but then she did not, so it was much more theory than practice for us.

I just wanted to say though that I think whatever you are feeling is normal. It will not hurt your son if you are grieving. I do echo that you can be AP without every single box ticked, and if you can hold him at all, or talk to him, I think that is an amazing start.

Look for local support if you can - meeting families at different stages can be amazingly helpful. I am thinking of you and wishing you and your family well.
post #56 of 96
Thread Starter 
Thank you for all the kind responses. The acceptance here means a lot to me. I am a very stoic person and find it hard to let others know that I'm not handling things well.

GuildJen~I am sorry for the loss of your precious angel. May you find comfort in your faith and knowing she is at peace now.
post #57 of 96
This whole thread is so very loving and beautiful to me. Mama, I know you are feeling the wonderful wisdom, guidance, and love emanating from each of these mamas, as I am. I send you lots of love and strength.
post #58 of 96
Quote:
Originally Posted by kchoffmann View Post
This whole thread is so very loving and beautiful to me. Mama, I know you are feeling the wonderful wisdom, guidance, and love emanating from each of these mamas, as I am. I send you lots of love and strength.
:

Sending only peace.
post #59 of 96
I am a Mama of a kid with special needs and I understand some of your dark feelings. I trust that in time you will see your son for the blessed teacher that he will be. My son has neurofirbomatosis and our journey has not always been easy. Sometimes I am so sad for him that his life will be harder (I think) than his sister's. He is truly a light in my life. It does get easier, and there is real joy ahead for you both as parents.
post #60 of 96
My dd has ds, it was quite a shock. The thing that helped me was to focus on breastfeeding. I felt like I'd "lost" the baby I thought i would have, I wasn't going to lose the bf. I used a medicine dropper until I got a finger feeder for the first 5 weeks. This was easier when she was too tired to nurse and helped me train her tongue to stay down. LLL was my lifeline the first two months. Hang in there, it gets better. He's lucky to have an experienced mama
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