Feeling guilty....

shamrocksister · October 2013

I have a problem. It's a great problem to have, but it keeps me up at night none the less.

Background:

-My son was born at 26 weeks, 1 day at 1 pound 10 Ounces.

-3 months NICU stay

-2 Transfusions, 1 Infection scare, 2 months on the vent.

-Briefly has chronic lung, back to better capacity now.

Today:

He is perfect. No lasting effects what so ever. He has met or is only slightly delayed in all his milestones, has no hearing or sight issues, and is not incurring any breathing issues (asthma etc.). His doctors are amazed and we work our asses off with him to keep the momentum going. Here is my problem. I am a parent volunteer on the family advisory council at our hospital, and I am advocate for the NICU moms. I see every day cases where things are not turning out like my son did, even though they were born under the same conditions. Don't get me wrong, we have in no way had a smooth ride. We almost lost him a few times and life was hell, he had to fight. When we got home though life just returned to normal and I know from experience how rare that is. I am finding it hard to feel credible when I am talking to these other moms now. I almost feel guilty that things turned out for me the way they did. I even feel bad sometimes wearing my "proud preemie mom" stuff. I have actually had a mom say to me in the past "really, your son isn't a traditional micro preemie like ours". I was shocked. I remember thinking "Really!!! He was born two weeks after viability!!!" Now I worry though that more of the moms feel that way and I have been wondering if I should step aside and let a mom with a more "traditional" path take over but I really do feel like I still have a lot to offer. I am rambling now, but I wanted to get this out. I appreciate any thoughts anyone has. TIA

kck329 · October 2013

I've had similar feelings-my 27 weeker had an incredibly easy journey compared to a lot of babies born at her gestational age. Its hard not to feel some kind of survivors guilt that that we don't have more long-term challenges.

But do you know what? Even if some people had/have it harder, our experience was real, it was painful, it was scary, and it is valid. So is yours.

I think you should definitely keep volunteering-it sounds like a great fit for you. Don't let one mom who was probably having a bad day and is struggling with her own emotional baggage deter you from being part of something you value.

brachysira · October 2013

It's hard to tell if someone is worse or better off than you at a single time. Plus, if he looks perfect now, this can provide hope to those with scarier problems. Finally, if you were taking your son to appointments and therapies every day or were dealing with triplets who all had special needs, you wouldn't have time to volunteer. So with your luck, you are able to give more, and people will appreciate that.

shamrocksister · October 2013

Thanks for the wonderful responses. I guess deep down I know that continuing to volunteer is what is right for me, but I think I am going to have to work harder at replacing this guilty feeling with one of silent gratitude that my son isn't going through what others in his situation are. If I let myself go back to that time, and remember the pain and the fear, remembering that I didn't know then that it would all be OK, I know that I can at least come from a somewhat similar place to where these moms are. Plus navigating a NICU is tricky no matter why your there, and that in itself is something I can help with. Again, thanks ladies. I wish you all the best with your little blessings

jbranden12 · October 2013

I hope this comes out okay.Yes, I am envious of you. As a stillbirth mother and a mother of a 26 weeker who did suffer severe brain bleeds with resulting hydrocephalus/vp shunt, I am envious of you. However, I also know that many mothers have experienced even more pain and hardship than I have, and I am thankful Anna is doing as well as she is.

It is possible to acknowledge the very real pain you felt, and probably still feel, while at the same time feel thankful for the outcome you are living which many are not. It's that second part which gets people in trouble.

I am a trained counselor. I believe one does NOT have to have experienced the exact same situation as another in order to be of great help and support. However, not everyone feels this way and you have to be aware of that in your role. Please don't let it affect how you feel about what you are doing. You are doing a wonderful thing!

rslhmg · October 2013

Dd isnt a micro preemie, she was a 32 wker, but I do understand what you're feeling. There were so many 32 wkers in our nicu, and staying in the RMH I was able to hear their stories. So many of them have long term problems, and one didnt survive. I feel guilty sometimes that Dd turned out perfect, aside from being petite and having an asd (which she would have still had if she had gone to term), she has 0 preemie related issues. I am part of a preemie group on fb, and for awhile I didnt share our story because I was worried someone might feel like I was rubbing it in. I realized though, that there were a lot more people who needed the hope our story can give than anything else. Our nicu stay was rough, we nearly lost her on several occasions, and its a miracle that she has no problems. I had moments of resentment and jealousy towards other nicu moms who were taking babies home in less time with less problems, I couldnt see the light at the end of the tunnel. That may be the case with the mom you spoke of. Most days though, I wished there was somebody who could say "hey, I've been there" and share a story that turned out the way ours did, and at the time only seemed like a far fetched dream that was impossible. Like pp said, whether you continue or not depends on your comfort, but I'm willing to bet you are helping more people than you realize just by showing them that the outlook doesnt have to be bad, and that even if the odds are against them, anything is possible with these tiny miracles.

PhillyGal34 · November 2013

I am a volunteer with a preemie organization and have had the same feelings. They try to match you up with similar histories but my son was a 31 weeker with no complications or deficits. I feel like I have no credibility. But the truth is that even if you cannot understand 100% you understand 1000% more than non preemie moms in most cases.

LaciJaxx · November 2013

I think this just shows how much you really care and you should def keep volunteering. Although every single nurse and doctor we had was amazing, it would have been nice to have a volunteer like yourself. Not only were we first time parents, we were trying to figure out the nicu as well. Not to mention, we are military and have no family within 800 miles. I'm not one to feel guilty or compare one to the other so I can't totally understand that part but I understand your explanation. And all I can say is, I feel so blessed that out little angel is doing so well. It's nothing short of a miracle from above. When/if I start feeling down, I think about that. Good luck and keep us posted.

[Deleted User] · November 2013

My son is in the NICU now, he was born at 27 weeks. I think I would have loved to meet you and hear your story. In fact, your story gives me hope that one day my child might not have any long lasting effects. I think it's great that your child is doing well and thank you for spreading the positivity and volunteering your time.

kcamrud · November 2013

Don't ever feel guilty!!! Be proud!!! Your little one is a fighter and deserves just as much as anyone else!!

LeLe9 · November 2013

Please continue to volunteer your journey and experience can really help others. I've had a very close friend say on a few occasions say about my baby oh she wasn't a preemie, she wasn't that little, she didn't face the same problems other babies face. It stings that someone would dismiss you, your journey, experience, fears from the nicu and even now as ct scan finally proved sutures are still open and she doesn't have cranio but possibly faces a helmet. Wasn't prepared for the debates associated with vaginal/csection births, breastfeeding/formula and nicu preemie comparisons.

OMGTree · November 2013

I can't tell you how much I wished there was someone like you at the NICU my daughter was in. I wanted so bad to be able to talk to another mom who went through it. What you are doing is awesome! Some people will be to hurt or stressed to appreciate you and that's ok. However, others will want your help and support. I remember calling my mom to come to the NICU just so I could have someone to cry with. It's people like you that make the long road a little easier. Public service is not an easy thing. Know that for every 10 people you get that don't want your help, for the 1 that does, it's a real gift.

DrRx · November 2013

I also have a 26-weeker born at 1 pound 12 ounces, and despite a speech delay and her being very petite, we also don't have any long-lasting preemie related issues. However, as others have said, the fact that we have a great outcome doesn't negate or erase the very real and hard emotions when we didn't know if she would make it or what kind of long-lasting effects she would have. For me, it isn't so much as offering stories of hope (which I also looked for when I was going through our journey), but it was finding out how they coped going through a similar thing (having a micro-preemie in the NICU, having the baby on an oscillator, etc).

As someone said, the person who said that to you is working through her own issues and stress, and that you should try to not take it personally. You aren't saying at the meeting "Hey, what you're feeling is silly because my baby turned out just fine." You are there providing someone who has been through it and can relate. Volunteering isn't "Hey, my story was really awful with an awful ending, and I'm here to let you feel better since mine was so awful."

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