We can't send him back...My worst nightmare has happened - Mothering Forums

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#1 of 96 Old 08-31-2007, 04:03 PM - Thread Starter
 
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That is what my husband keeps saying, we can't send him back. Our baby is ten days old and still in the NICU, he is a big term baby at nine pounds but had a stroke in utero and has down's syndrome. He is medically stable but is not eating properly and can't come home. It may be several more weeks.

Where do I fit? Not with the preemie moms because my baby is term and a giant compared to their tiny little ones. There is a new mother's support group and breastfeeding group at the hospital but I can't bear to be around healthy babies right now and the concerns of new moms. I'm not a new mom, I am a breastfeeding mom who is feeding her dd and pumping for my son in NICU.

I am just a mess right now. It is terrible : to say this but when I became pregnant my worst fear was what if I have a child who will be a burden to us in our old age and to our family now. My husband says all children are a burden I feel like all the plans we had for a new baby and our family have crashed against the rocks, I can't see a future right now that makes sense to me.

I have times when I don't want to visit him. It is difficult anyways because he is seventy miles away and by the time we travel there we only have a few hours until we have to come home again to take care of the other kids. I don't want to pump milk but can't bear not to because I feel so strongly about the need for breastfeeding.

I may never breastfeed again and that is hard to take. I so much wanted to have that special time with this child.

I can't talk about him without crying. I can't even think about him without crying. By the way he is beautiful, perfectly formed with very minimal features of DS. Because he had a stroke it is hard to tell what will be permanent and what will get better with time.

The baby things in our house are so depressing for me. I feel worse than I did after my miscarriages.

Every hope and dream I had about having this baby and the homecoming are gone.

I need some hope for the future and I can't find it. I don't know how I can cope with another three weeks in the hospital or with him coming home on possibly a feeding tube.
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#2 of 96 Old 08-31-2007, 04:07 PM
 
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Oh mama, it sounds like you're in a really dark place right now. Love and healing to you and your newborn sweetheart.
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#3 of 96 Old 08-31-2007, 04:08 PM
 
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You are welcome here, and it's a great place to suss out feelings and needed action. The bestest women I ever 'met' are here...

You will grieve the loss of your dreams about your baby, and it is a process. Try not to be too hard on yourselves, and try to remember to love one another in these hard times.

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#4 of 96 Old 08-31-2007, 04:09 PM
 
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I am so sorry you are going through this. If you want positive stories of kids I have worked with who had DS and were stroke survivors, just ask...

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#5 of 96 Old 08-31-2007, 04:14 PM
 
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It's a terrible shock to have a child who is ill and with a disability, and your mind is full of what-ifs right now. It's OK to grieve the child you don't have before you get to know the child you do have.

Does the hospital have a social worker? You might seek them out for someone 'neutral' to talk to, someone who can give you a sense of what to expect. You also sound, understandably, depressed, and I would make sure you keep an eye on that. You need to take care of yourself before you can care for your children.

Many moms here can tell you about pumping or deciding to let that go, about tube-feeding, and how it's not that bad, about having a child with major and/or minor disabilities. You're not alone, you're just in a different world than you thought you would be. Post your questions and your concerns. You'll find the moms here very open minded and helpful.

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#6 of 96 Old 08-31-2007, 04:44 PM
 
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I just had to send a . I'm so sorry you're struggling right now.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#7 of 96 Old 08-31-2007, 04:49 PM
 
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I saw your post when your ds was born in your DDC. I still have no idea what to say without sounding totally stupid, I'm sorry.

Just know this is a safe place. You can talk it out and sort it out here. No one here has been exactly in your situation, but many moms here have had critically ill newborns, tube fed children and newborns, children with down syndrome, and children who have sustained mild brain damage. There are moms here who can talk to you and help you find your way down this new path.

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#8 of 96 Old 08-31-2007, 04:49 PM
 
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I second talking to the hospital social worker. They are pretty helpful, if only as a sympatheic shoulder...
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#9 of 96 Old 08-31-2007, 04:59 PM
 
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i couldnt read without giving a :HUG

i also second seeking out a social worker, or the like that you can let loose with all you are feeling, etc... i worry for you too

~Kris mama to Alexis (15), Elizabeth (10), Andrew (7), and 1 angel
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#10 of 96 Old 08-31-2007, 05:26 PM
 
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Oh, mama,
I can't imagine what you are feeling... But this is a safe place to come, vent, cry, and share. We will not judge you.
I am sending healing vibes to your babe, and to you... right now you are all hormonal, and your body and emotions and heart all need some time to heal. Try to find support where you can, pump if you can, and let us know how you are doing. We care.

Sharon FF/Medic DH 3 DD's 2/98, 4/01, 11/05
~*The days are long, but the years are short.*~
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#11 of 96 Old 08-31-2007, 05:32 PM
 
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Originally Posted by Finch View Post
Just know this is a safe place. You can talk it out and sort it out here. No one here has been exactly in your situation, but many moms here have had critically ill newborns, tube fed children and newborns, children with down syndrome, and children who have sustained mild brain damage. There are moms here who can talk to you and help you find your way down this new path.

Yeah that. I remember feeling many of the same feelings you've expressed in your post. Please be easy on yourself--having a baby in the hospital on top of normal postpartum hormonal stuff can be brutal.

It sounds so cliche, but taking it one day, one hour at a time is all you can do.
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#12 of 96 Old 08-31-2007, 05:35 PM
 
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You can't send him back...but in the future, I promise you will be glad he is here.

-sarah-
mom to three, 4 and under.
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#13 of 96 Old 08-31-2007, 05:40 PM
 
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Oh mama, I don't really even know what to say. I haven't been in your shoes, but I can tell you the mamas on this board are wonderful and will listen unconditionally.

No matter how or when we learn any of our kids are special needs, there is a grief that goes with it that many people cannot understand. Remind yourself this is still the baby you loved while you were pregnant and waited for. I know it must be really hard to not know what the future holds right now, just know you don't have to figure it all right now. Be kind to yourself because any emotions you are feeling are the right ones for you to be having. I cannot imagine how hard it must be to deal with what you are dealing with, especially while being post-partum. Please feel free to talk to us here as much as you need.

Sending you many hugs and many healing thoughts for your sweet little boy

~Rebecca~
mama to a sweet girl , & 4 silly boys

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#14 of 96 Old 08-31-2007, 05:54 PM
 
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Your post prompted tears and a quick dash over to hug my boys. They think I'm crazy.

You're safe here.
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#15 of 96 Old 08-31-2007, 06:19 PM
 
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Many s to you. My "baby" is almost 5 and those kinds of hard days are way behind us but I remember the grief and fear so well.

Talk it out here. Talk it out with your partner. Talk it out with a counselor or social worker. Just make sure you have support somewhere. We can be that somewhere.

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#16 of 96 Old 08-31-2007, 06:23 PM
 
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It's okay to feel the way you do. It's the way many mothers feel without saying the words out loud.

Sincerely,
Debra, homeschooling mom of 4ages 10 1/2 (AS), 9 1/2, 7 1/2, and 4 (Apraxia, Dysarthria, HFA, OCD)
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#17 of 96 Old 08-31-2007, 06:26 PM
 
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Oh mama, I know just how you feel. When dd was born, she was only in the NICU 5 days, but even after she came home we went through so much with feeding problems and the chromosome disorder and it was such a huge, awful shock. I don't think I enjoyed one moment. Even if I was holding her and thinking how much I love her and how beautiful she is, tears of sorrow would be streaming down my face because I knew she wasn't 100% healthy and her future would be nothing like I dreamt, and therefore my future wouldn't be either. Nothing can prepare you for it, but I truly believe, at least for everyone I've talked to- that the period after the initial diagnosis, when there are SO many unanswered questions about how bad it's going to be, is the most difficult. It's emotional hell. I am not someone who can easily be in denial, and I tended to believe the worst constantly. I thought she would die, she would be severely unhealthy, etc. The truth is, it was much too soon to make any kind of prediction. DD seemed totally out of it for the first month. She barely woke up, barely seemed to make eye contact or even notice or care if I was there, had to be force fed, but slowly things got better. So much better. But I still cried, a LOT, through the first 6-9 months. Somewhere along the line, the way I deal with this has improved drastically. I would never have believed at first that I could ever be happy again.

Pumping is terribly hard, but in some ways, it gave me something to do to give me hope that I could help her. Just take that part one day at a time. You can always stop if it becomes overwhelming- thinking about what it will be like to *still* be pumping in 3, 6, 9 months used to make me feel trapped and angry- just making it through one day and one week at a time was better.

Allow yourself to feel however you need to right now- you don't have to be okay with this. It isn't fair. Just know that for most people it really does get easier, emotionally, at least, the cycles of grief seem to happen less and less. Right now everything is very raw and that's perfectly understandable.

DD1 7/13/05 DD2 9/20/10
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#18 of 96 Old 08-31-2007, 06:41 PM
 
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I wish I had something to say, something to offer you in the middle of all this grief. You expressed the things so many of us special needs moms feel at various points as our dreams and expectations for our lives and our children are seemingly suddenly crashed. You will get through this dark time. You will. And we will be here for you.

Rachelle, mommy to 8 year old boys! 

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#19 of 96 Old 08-31-2007, 07:01 PM - Thread Starter
 
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. DD seemed totally out of it for the first month. She barely woke up, barely seemed to make eye contact or even notice or care if I was there, had to be force fed, less. .
That is where my son is. I have to go in to learn to feed him and it is really hard for me. I don't know how to pump or bottle feed and I never wanted to learn. How can I do AP like this? My husband holds him and feeds him and seems happy to do so. I'm not happy at all except for the time at the end of the feed when I put him on my bare breast and let him cuddle and sleep. He likes that.

I feel like I was so arrogant thinking I'm an experienced mother and I have it all figured out with breastfeeding, and AP.

This is the opposite of everything we believe as parents. Our child is abandoned into a box most hours of the day.
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#20 of 96 Old 08-31-2007, 07:05 PM
 
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This is the opposite of everything we believe as parents. Our child is abandoned into a box most hours of the day.

-sarah-
mom to three, 4 and under.
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#21 of 96 Old 08-31-2007, 07:11 PM
 
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It's ok to feel the way you do. Honest. You sound like a great mom, being willing to pump for your baby. Hang in there.
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#22 of 96 Old 08-31-2007, 08:11 PM
 
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I'm sorry things are so hard right now. Everything you are feeling is normal and natural. We need to grieve that loss of the original dreams and ideas we had for our babies before we can move on to see future dreams for them.

You asked how you can be ap under these circumstances and I just have a couple of suggestions for you:

1. see if you can do any kangaroo care for the baby even if you can only be there for limited times. Even if you can't bf the baby feels that closeness and knows mom is there.

2. Moms here at MDC are some of the best educated I've seen in regards to researching choices for their children. Take that thought and use it to give yourself strength if you can. You can be this baby's #1 advocate. You can ask questions until you are satisfied with the answers.

You've found a great place with this board. Come here to vent, scream, cry, laugh (and you will laugh again) whatever it is that you need. You can do this. I know it's very dark right now, but you will find your way back into the light.

There may be all kinds of new things you are learning with this particular baby, but at its heart what this baby needs is exactly what you have given all of your other children I suspect - tons and tons of love.
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#23 of 96 Old 08-31-2007, 08:15 PM
 
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How can I do AP like this?
You create your own version of AP - just like the rest of us have Remember, the core philosophy of AP is meeting your child's needs.

Okay, I looked it up and the eight core principals of AP are -

Preparation for Pregnancy, Birth and Parenting
Feed with Love and Respect
Respond with Sensitivity
Use Nurturing Touch
Engage in Nighttime Parenting
Provide Consistent Loving Care
Practice Positive Discipline
Strive for Balance in Personal and Family Life


You can still do all these things even if you don't breastfeed, can't wear your baby, cloth diaper, etc. Luckily, we here have ALL been through these struggles and are more than willing to help you get through yours with caring and compassion.

and then I read this -

Dr. Sears does not require a parent to strictly follow any set of rules, instead encouraging parents to be creative in responding to their child's needs. Attachment parenting, outside the guise of Dr. Sears, focuses on responses that support secure attachments.

Boy, if that isn't this group, with our creativity in dealing with our kids, I don't know what group would be! We must be the most AP of all

Most importantly, you need to make sure your needs are taken care of and you've got support. Maybe that's a PPD group, a DS support group, or a counselor. Or a great message board like this one.

It is VERY hard to suddenly go from what was supposed to be normal into being thrust head-first into the world of special needs. It is even harder when you don't feel like you fit in anywhere. You look at your child and wonder what happen to that child you expected to watch grow up healthy and happy, and you only see the disabilities - and then you are wracked with guilt for thinking this.

We've been there. I've been there. I remember being very angry and upset over dd's eyes. I thought she had beautiful eyes and loved how they seemed shaped like dh's. Then the doctor pointed out that the epicathal folds might mean some syndrome, we should run tests. Suddenly I found it hard to look at her eyes b/c they were a sign of something wrong. And then I had to realize that they were the same beautiful eyes as before.

I will also admit that when the doctor first started us on the road for the search for the correct syndrome, I had this sudden urge to have another baby right away - partially to prove I could still have a "normal" child, and also to give my older dd a "normal" sister. I then realized that having a "normal" child was not guarenteed and my older dd was and still is perfectly happy with the sister she has.

My path has been different than yours, but it's had it's dark spots and rough patches. But honestly, I think I'm lucky to have such a happy innocent little creature like my daughter.

hugs to you!
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#24 of 96 Old 08-31-2007, 08:25 PM
 
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I just wanted to say I'm incredibly impressed by your post. It is a sign of great maturity and security that you can give voice to these feelings. It is a very healthy thing to do.

Is there a DS group in your area? I know your hands are full right now but I'm wondering if someone at the hospital could help hook you up with a supportive parent who has been through some of what you are going through right now.

Hang in there.
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#25 of 96 Old 08-31-2007, 08:30 PM
 
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Oh honey. I know the dark place you are in. My son was 9 lb 13 oz when he was born, but he was still the sickest baby in the NICU, the one they were talking about putting on ECMO, the one we'd known since 18 weeks gestation might not survive, or might suffer serious consequences from the traumatic birth we knew he would have.

I promise you it gets better. You will have more clarity, more peace, you will know what the future holds because you will be living it. You will work through the grief and the other emotions you are feeling right now: there is no wrong way for you to feel, you have a lot to adjust to and absorb!

I hope very much for you that it will get better as well in that your son will be able to do more than you dare to hope. I don't mean to sound trite, but there is no better time in life than in the beginning to have a brain trauma and recover from it. My son has done amazingly, though there have certainly been other bumps on the road and other surprises and 'new normals' to adjust to.

In the meantime, again I don't mean to sound trite, but take it one day at a time. Talk to whoever will really listen and not tell you how you should feel or try to shut you down. Your dh sounds like a sensible caring guy, but there are times when you won't be able to support each other because it's too much, it's better to turn to others. Do what you can for your beautiful baby: if it helps to pump because it gives you a focus, then pump. I know pumping is incredibly draining! If people offer help, then ask for child care: it'll give you recuperation time and help you feel less torn.

I will be thinking about you. Please come back and talk with us. Again, I promise you, it will get better.

Fiona
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#26 of 96 Old 08-31-2007, 08:45 PM
 
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Oh mama, s.

I know there isn't much I can say that helps, but I've been in a similar dark place. I gave birth to twin boys that ended up having a random genetic mutation resulting in a disease called Tuberous Sclerosis. In their case, it is really severe, and we are dealing with multiple special needs in each of them. The disease, the medical complications, the twins, the expense, the stress, the darkness....it was just too much.

You'll make it through this. You WILL. It's going to be hard, and you're going to go thorugh all the stages of grief and mourning, but on the other end you're going to find strength, hope, and love like you've never known. Stay close to your husband--this is IMPORTANT. Stay close, share your fears, and listen to his when you can. Lean on each other, and go to each other. You will need him, his love, and his support like no one else's over the next weeks, months, and years. This is the time to turn toward him, not away.

Special needs children often start life out rough. Trial by fire, almost literally. If you can make it through this NICU time, day by day, you'll be able to make it through the rest. One challenge after the next, and in the beginning they're big challenges grouped really close together. As you go on, the challenges will be a mix of small and big ones, and they'll be spaced out more. Much more. You will learn to cope, and special needs mothering will become as natural to you as the mothering you've always known.

Lean on the women here (but not so much that you're not leaning on your husband, too). They will help you through the dark times.

And don't ever beat yourself up for feeling things like "we can't take him back." My boys are 5, and I still have dark moments of wishing the worst....wishing I had an abortion, wishing they would die, wishing I could have my old life back, wishing I had never met my husband or started down this life's road, wishing I could find them new parents. These are the rare, deepdarkawful thoughts, and they're okay. They happen. They're pretty normal, from what I've seen. They don't affect at all the other 99.9% of the time (now) that I feel love, patience, and thankfulness for them. So if in the beginning you have some dark thoughts, or don't want to be near him sometimes, let that shame/guilt/whatever roll off your back. It's okay. Those thoughts might come back to you time to time for years, but like everything else that's overwhelming right now, they'll lessen and you'll eventually see their place in it all.

Is there a grief counselor that works with the NICU? Someone you could talk to about having a baby with special needs? Sometimes they're wonderful people to talk to, sometimes they're hacks. It's worth trying, on the off chance that you meet someone who gives you a word, or a thought, that helps you peek out of the darkness for a little while.

Wishing you and your family healing and strength.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#27 of 96 Old 08-31-2007, 08:48 PM
 
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you fit in here hun

I hope your little one is doing better, and We are here anytime you need to vent, my pm box is open if you just need someone to talk to. I don't have a down syndrome baby, but I have a nice shoulder to cry on. :
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#28 of 96 Old 08-31-2007, 09:25 PM
 
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{{{{hug}}}}
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#29 of 96 Old 08-31-2007, 10:15 PM - Thread Starter
 
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I am trying to hold on to the small things each day. The calls from friends & family, each day is better for our baby. A week ago he was weaned off the vent and we began to hope that he would live, no one would tell us that even a week ago. Then they started giving him breastmilk, 5cc a feed and now up to 60cc a feed. A few days ago they started letting us hold him as much as we want, today my husband came home with pictures of him holding an awake, alert and smiling Nathaniel. Today he started wearing him own baby clothes from home. By tomorrow they hope to remove the PIC line. Yesterday my four year old got to touch him for the first time. They are giving us things now to take home for when he comes home. The child development specialist says things like " a child with suspected DS". That sensitivity means a lot to me since bloodwork has not come back yet to confirm diagnosis. I still think it is true but I appreciate that respectful way of talking about my son.

Thank you for all the encouragement here. It means so much to me and I cried as I read each response.

I know things could be worse. His heart is fine and no signs of infection so far.

I am just so sad that I brought this pain to him and the rest of my family. : Of course the Lord has a plan for him but it is hard for me to see that right now when there is so much pain.
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#30 of 96 Old 08-31-2007, 10:19 PM
 
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((HUGS))

The whole situation must be very shocking. Come over to www.parent-2-parent.com forums. There are many kids who had strokes in-utero and have different syndromes and spent a lot of time in NICU. It's a very positive place and you will get tons of emotional support there.

This is also a wonderful board with good AP values. Yes you CAN still be an AP mama even if your child has special needs.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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