Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.
Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.
It's the middle of night and I'm sat exhausted watching my 3 week old baby girl sleep, I find it hard to sleep for fear that she will stop breathing whilst I'm not watching. How do/did you manage the fear of something like that happening?
A different Danielle here. Our son is 16 months old. Over time, it has gotten easier to rejoice in the now and not be afraid of the what might be. Every day that he's been here- growing, changing, BREATHING- is a day further from the worst of the fear. The first cold is hard. The first bump on the head when they start running is hard. The first everything is hard because you fear it being not the first, but the last. The 15th is easier, especially as you see that the baby is fine even if you aren't.
That said, he cried for 45 minutes straight just now. This is a remarkably sunny boy, who can go a week without crying that much in total. I put him down, thinking he might be tired, and said to my husband "If he goes to sleep, do you promise me he'll wake up?" About 30 seconds later, my precious boy let out a huge burp and is back to his usual sunny self. Gas. He had GAS. It took a year off my life. Some days are like that.
I'm dealing with the fear too, Danielle. For the first couple of weeks, I would sometimes wake up in a gasping flurry, just knowing that something had happened to him while I was sleeping. He will be a month old tomorrow. I'm managing the fear so far by doing my best not to think about it. I'm trying to keep myself in the present, where he is healthy and happy. It is easier said than done, though. I couldn't begin to list for you the crazy, irrational things that I have Googled on my phone during late night nursing sessions!
So, I don't consider myself an alarmist or a helicopter parent. But then Ethan died. Oddly, I wasn't anxious about bad luck striking again with our other 3 children immediately afterwards. But now, a year out I have anxieties something will happen. It sucks, feeling so scared. For me, I find prayer helpful - personally I like to ask Ethan to keep a watchful eye over his siblings, and to guide me to keep them safe. I also find it helpful to remind myself that much of these anxious moments are caused by my post traumatic stress disorder. That helps me put things in place sometimes.
But honestly, I don't have a magic fix. Having been on the side of shit luck it's difficult to return to that gentler place. Congratulations on your newest addition. Remembering your whole family.
I know this doesn't fix the deep fear, but from the day our little one slept in the pack n play next to our bed, we had a movement monitor under her mattress to detect if she had stopped breathing for a second. This helped me sleep while she slept. Also, I knew that in the early days my husband slept with one eye open. I remember the first night she was home alone with us (without any family), both my husband and I thought she had stopped breathing (she was in my arms sleeping). We looked at her chest, and there was no movement. My mind jumped to being at her funeral. Then at the same time, we both looked down at her belly and sure enough that was going up and down. I burst into tears thinking, I'm not going to be able yo do this. Now she is 15 months old sleeping in a crib in her room, and we still have the movement monitor - will probably have it for a couple of years! Try to do the best you can without making yourself crazy. Xo
Danielle, I hear your fears........ with my first daughter (who is now 3) I never worried that she may not be breathing when I woke up but it's a HUGE fear I have for my soon to be here baby boy.
I have bought a movement monitor for the cot and will be buying a snuza hero monitor to use in the car/pram/bassinet. I know it's not fail-safe but it will at least be something extra I can do to try and alleviate some of the stress.
I don't have any other answers for you mama, just try and relax and know you are doing such a great job with your beautiful baby girl. xxx
I have the same fears, everytime I wake up I make sure she is breathing before I do anything else. In the early days I would wake up terrified that she was dead and be in a panic. Now it is better, the fears are still there, but I handle them better. I don;t know why, maybe the 60 days of her being okay in the morning. All doctors appointments scare me, she is small and had failure to thrive early on, so I am sure that they will tell me something terrible about her health.
It makes me feel better to know that I am not the only mom dealing with this issues. My living kids are 3 and 4 years old, and my husband and I have talked about having another child. Rhys died almost one year ago of SIDS. He died in his sleep, and I found him not breathing.
The fear I feel for my living children knows no bounds. Last night, my son Rowan, 3, developed a cough kind of out of no where. He started coughing and he sounded hoarse. He woke my husband and I who were sleeping in different parts of the house. I know neither of us got a good nights sleep. I heard him check on him several times, and I felt the need to check on him every fifteen minutes. If one child can die for no reason at all, just stop breathing, then another can certainly stop breathing for a reason!
After nearly a year I don't cry every time I see one of my children sleeping. I still watch for that rise and fall, the signs of life, but I no longer watch with my heart all the way up in my throat, on the verge of panic.
The bottom line is that nothing will cure this for you other than time and exposure. Talk to yourself, tell yourself that it is ok. You have NO control over things. If we had control, would we have lost our children? No. And you can't stop anything from happening. You just have all the love to give, so give it, and hope for the best. More often than not, everything will be ok.
Sleep is the worst! Its so scary, especially when they are that little. We had an angel monitor for our daughter to monitor her breathing. It helped give me some relief. We also got a video monitor once she went to her own crib so I could actually see her sleep. I would wake up at all hours, turn the monitor on and just watch for her chest to rise and fall before I could go back to sleep. Every day she lives is another victory and it does get easier. Transitions are the hardest for me-like bassinet to crib, then her first blanket in crib, first foods (which could cause allergies) and other firsts. I feel like Im just waiting for her to die sometimes. Hang in there! Oh and it also helped me get some sleep. I could only really rest if I knew my husband was awake and watching the baby. Otherwise I couldnt turn my mind off those first months. And I felt the fear rise with lack of sleep on my part, so getting sleep was important to not feeling crazy!
I knew I would find understanding here, thankyou. I too shoot wide awake in terror thinking she isn't breathing, my heart jumps into my throat at every cough and splutter thinking she is choking and this is the end and I only sleep properly if my husband is here and awake. I'm hopeful that I will handle it better as time goes on. I'm so glad we have this board now although I still don't quite believe im able to be on here with my beautiful baby boys little sister
It happens to me in the car, too. If I can't hear him making noise or rustling about, my heart is in my throat ever time I stop the car. It is always such a huge relief to open the back door and see that he is fine - either sleeping or quietly observing. He sleeps so well at night already. I'm so grateful for that because of my beastly work schedule, but it is also so scary to think what could happen in those hours when we are both sleeping! I live alone, so there is no one else to stand watch. I know it will keep getting better with time. though. Each day that he survives builds the tiniest bit more hope & confidence. I'm so grateful that we are here, Danielle.
I don't have a rainbow baby, but I can so, so, so relate dot the fear and anxiety (I have two living children). I immediately think worst case scenario whenever something is wrong with me or them. Headache? Meningitis! Constipation? Blocked bowel! And so on. It is terrible.
To make matters worse, I was in a terrible car accident a few years ago in which my husband was nearly killed (we had the coma, extended hospital stay, rehab...the whole 9 yards), so now I'm super nervous in the car and hate getting on planes or boats.
It's like all those terrible things that you hear about that happen to other people suddenly become possible once you've become on of the one in whatever statistics for whom something terrible happens.
I worry about my kids all the time. I hope it gets better in time, but the world just feels a lot more...dangerous, I guess.
My rainbow baby is 7 months old and I live in constant fear. My son passed away from SIDS a year ago when he was 18 months old. At an age when I thought I didn't have to be worry about SIDS it struck my family. My daughter now sleeps with a breathing monitor and sleeps in my room. To be honest I don't know when I will be able to put her in her own room. It terrifies me. I have lost my innocence and now worry about everything.
I try to enjoy my daughter and not let fear consume me but its so hard. It's nice to know I'm not alone in the way I feel.
That said, he cried for 45 minutes straight just now. This is a remarkably sunny boy, who can go a week without crying that much in total. I put him down, thinking he might be tired, and said to my husband "If he goes to sleep, do you promise me he'll wake up?" About 30 seconds later, my precious boy let out a huge burp and is back to his usual sunny self. Gas. He had GAS. It took a year off my life. Some days are like that.
Welcome to your sweet baby girl, Danielle.
But honestly, I don't have a magic fix. Having been on the side of shit luck it's difficult to return to that gentler place. Congratulations on your newest addition. Remembering your whole family.
- annie
I have bought a movement monitor for the cot and will be buying a snuza hero monitor to use in the car/pram/bassinet. I know it's not fail-safe but it will at least be something extra I can do to try and alleviate some of the stress.
I don't have any other answers for you mama, just try and relax and know you are doing such a great job with your beautiful baby girl. xxx
The fear I feel for my living children knows no bounds. Last night, my son Rowan, 3, developed a cough kind of out of no where. He started coughing and he sounded hoarse. He woke my husband and I who were sleeping in different parts of the house. I know neither of us got a good nights sleep. I heard him check on him several times, and I felt the need to check on him every fifteen minutes. If one child can die for no reason at all, just stop breathing, then another can certainly stop breathing for a reason!
After nearly a year I don't cry every time I see one of my children sleeping. I still watch for that rise and fall, the signs of life, but I no longer watch with my heart all the way up in my throat, on the verge of panic.
The bottom line is that nothing will cure this for you other than time and exposure. Talk to yourself, tell yourself that it is ok. You have NO control over things. If we had control, would we have lost our children? No. And you can't stop anything from happening. You just have all the love to give, so give it, and hope for the best. More often than not, everything will be ok.
To make matters worse, I was in a terrible car accident a few years ago in which my husband was nearly killed (we had the coma, extended hospital stay, rehab...the whole 9 yards), so now I'm super nervous in the car and hate getting on planes or boats.
It's like all those terrible things that you hear about that happen to other people suddenly become possible once you've become on of the one in whatever statistics for whom something terrible happens.
I worry about my kids all the time. I hope it gets better in time, but the world just feels a lot more...dangerous, I guess.
I try to enjoy my daughter and not let fear consume me but its so hard. It's nice to know I'm not alone in the way I feel.