Tuesday, January 22, 2013

Friendships After the NICU

Everything, and I mean everything, changes after the NICU experience. I've heard so much about how having a premature baby affects marriage. Even the NICU social worker brought it up. I've seen the divorce statistics. It's a grim reality that painful, life altering events, painfully alter relationships.

And one thing I've found out? These relationship challenges don't stop at marriage.

Let's chat a bit about friendships after the NICU. Not every situation is the same, but the more I get to know other preemie moms, and the more time I spend on the opposite side of the NICU, I'm convinced that friendships can be the lifeblood of recovery from such brutal, life-altering events. The more healthy, life-giving relationships you have in your life, the stronger you will be for your preemie. But friendships can also be a source of pain - reminding you that everything has changed and that you will never be the same.

The very minute Jack was born, I was no longer me. I was no longer the Jessi of carefree years, of small, inconsequential problems. When Jack made his early appearance, I didn't care about the same things anymore. How could I? We were on a life and death journey. Our dreams were crushed. This was my new reality. The preemie mom reality.

And in this preemie mom reality, I've had friendships start, friendships remain, and I've had friendships fail.

The other morning I was thinking through the various types of friendships I've had surrounding our time in the NICU and since. This list is by no means exhaustive, but it's a start. Hopefully you will find this list helpful and maybe it will bring some clarity to your particular situations.

1) After the NICU, some friends can't handle it and don't know how to relate anymore. Maybe more correctly "some can't handle you anymore." Maybe this friend knew you when you were carefree. Your whole relationship existed in that realm. Never too deep, but a fun, surfacy friendship. After the NICU, when you need to be serious, when you need your friend to understand, they can't handle it. They don't know how to relate to this new you. It is too much for them. They are not emotionally ready to go there with you. My advice? Say a cordial goodbye, and move on. There may come a time when this relationship can be rekindled, but you don't have the time or energy right now.

2) After the NICU, some friends are negative influences on your life. These are the ones I call the "Debbie Downers". At the moment when you need all the positive, hopeful energy you can get, the negative just starts spewing out. This could be in the form of always producing drama. Of incessant complaining. Of constantly asking for your advice about their problems and never asking you about yours. (This is not the time to take on a project!). Sometimes, the negative manifests itself in jealousy. I wish it wasn't true. But yes, some will get jealous of all the attention surrounding you and your preemie. Without writing paragraphs on how psychologically sick and twisted this is, how insecure it is, I'll just tell you now - let go of the negative in your life. Personally, the one that drove me absolutely nuts and got under my skin? Complaining. I would think - how dare someone complain about their life when my child may die? If you have a friend in your life who is always complaining around you and causing drama, I would say goodbye, and move on. Likewise, if you have mutual friends who continue to give passes to these drama makers, who refuse to see why this is detrimental to your journey, let them go as well. Clean up the negative. You don't have enough time or energy to devote to this. Use your time and energy to give your preemie his best shot at life.

3) After the NICU, some friends are insensitive to your issues. These are the types that never put themselves in your shoes. Maybe they don't have an empathetic bone in their body. Or maybe they are too self-absorbed to see how fragile you really are. They may say and do things that unintentionally hurt you. Sometimes, you need to be completely honest with this sort of friend and let them know how their behavior is affecting you. If they truly want to be in your life, then they will listen. There are genuine people out there who just need a little nudge to start being that steady friend you desire. But insensitivity is too much on an already raw wound. If a friend continues in that insensitivity, say goodbye, and move on.

4) After the NICU, some friends just won't "get it". Many times, this friend needs a Preemie 101 course to get on board. They just need a little education about everything you are going through. Unless you tell them, how will they know? Although this can seem inconvenient (why can't they just understand?), it is worth the effort if you want to save your friendship. And, this is a good chance to see if this friend is intimidated by your new life. You need to know if they can handle this new you. Chances are, you will have to explain RSV isolation over and over again. This just comes with the territory. You will need to let them know that you may not be able to hang out as much (not that you don't want to!). You will have to put in the extra effort to keep your friends in the loop.

5) After the NICU, some friends step it up, learn about the new you, and walk you through it. These are the friends who have been there from the start and are still with you. Hold these ones close. They are your life-long friends who will be there through thick and thin. They are the ones who give you grace for your short fuse, your stress, and your worry. In fact, they worry right along with you, but they will appear very strong for you because they know you need the strength. They will encourage you and find practical ways they can help. They will get you out of the house and plan fun and creative things for you to do together. They are the ones who show up on your doorstep with a cup of coffee, knowing they won't be asked inside. Please don't take these friends for granted. Let them know how thankful you are for all they do.

6) After the NICU, and over time, some friends quit asking, thinking you have it all together. This is the forgetful friend. It can feel very isolating. By all appearances, this friend doesn't seem to mention prematurity anymore.  They don't ask you how your child is doing or how you are doing. Like it just went away. They think that the more time you are away from it, the less important it really is. Now, all of us preemie mamas know just how far from the truth this is. Years later, we are still dealing with it. And on top of that, there are the new realities as our kids enter preschool, get new diagnosis', and the like. Reminding the forgetful friend is sometimes all that is needed. I am a firm believer that honesty is the best policy. Just do it gently.

7) After the NICU, some find their kindred spirits... online. Whether RSV isolation pushes us to it, or we can't find local support, the internet is a God-send to preemie parents. Don't shy away from getting to know another preemie parent online. Beyond chatting, messaging, and Skyping, send them a gift on their birthday or their child's birthday. Dream about ways you can eventually meet in person. If you are struggling to find someone who "gets it", who knows what you are going through, this online friend is where it's at.

8) After the NICU, some friendships happen because of similar (but different) circumstances. If you cannot find fellow preemie parents in your area, broaden your search. Just because someone doesn't have a preemie, doesn't mean they can't speak to a specific issue or get the reality of raising a special needs child. This year in particular, I have connected with a couple ladies who are dealing with their own unique set of circumstances, but who understand the highs and the lows of the special needs journey. I have really appreciated my time with them. Getting together for coffee, just to talk through my emotions, has been great. These friendships may have never happened if not for Jack's early birth. And I am thankful for the opportunity to meet new and amazing moms.

9) Your part, after the NICU - Yes, the preemie experience can be very isolating and lonely. In all the hustle of the NICU journey - of bringing your baby home and learning how this new life works - don't neglect your friends. Although you cannot devote as much time and energy, let your friends know you still care about them. Write them a letter, give them a call, send them a text. Make the time to see them, no matter how much of a sacrifice it is and even if it's not very frequent. Ask them about their children, even if it is painful to hear about typically developing kids. If these friends are going to be a part of your life, they will understand your crazy schedule, your moods, and the hurt underneath.

10) Your part, after the NICU - Hopefully by watching and learning how to do friendships after the NICU, you will get the opportunity to be the friend that "gets it." The friend who is there in a positive way, once crisis enters someone's life. Yes, the roles will be reversed. Hopefully you will know ways in which you can be a positive, helpful person in their life. You will know what not to say. You will be sensitive to their situation and you will remember that no matter how many years pass, you will still ask them how they are doing. Hopefully you will be the one who delivers a coffee, a bouquet of flowers, or a hot meal. Hopefully you will be the one who is a shoulder to cry on and the person to have fun with. Pay it forward, preemie mamas.

I could write about this for days. I still may have a few posts about friendship in the works. Just to add things I've forgotten or to clarify. I am by no means an expert in relationships. And yeah, these are my opinions (be gentle with me please!). I haven't always been the perfect example of a friend, but I try. And now that I've been through this, I feel my understanding of the true essence of friendship - of being there for someone when they face a life-altering crisis - has only been deepened and broadened because of having Jack. That little sweetie continues to teach me life's greatest lessons, if I am open to it.
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Anonymous said...

Thank you for writing this! Feel I could probably add to this too! I've since had friends share with me that they were keeping their distance because they didn't want to get in the way...when in all reality...all I needed or wanted was a shoulder to lean on or even just a smile!

Becky P. said...

Thank you Jessi. Amazing insight.

Joanna said...

Beautifully written Jessi.

Anonymous said...

Thank you for writing this! I went through a lot of this when my first daughter was stillborn at 39 weeks. Totally different than having a micro preemie, but a lot of the painful journey is surprisingly similar.

Alyson Birt said...

thanks for the post, Jessi. I have recently discovered your website and found it very supportive to me. I had my son at 24 weeks after a placental abruption. Besides being a relatively small and quiet child these days, he's doing great. He's turning three this coming Friday.

I found this post particularly relevant because I am currently struggling a bit (er,a LOT) with a personal friendship, even now, two and a half years after leaving the NICU.

I have a friend who constantly (and I mean...constantly) is posting on Facebook about how co-sleeping and breastfeeding your child until they're a good four or five years old is key to being a good parent and properly raising a child...and that if you don't, you are basically a scummy mother who "didn't do her research." She posts pictures nearly everyday of her child (a nine month-old who weighs more than my toddler) and attributes his chubby legs and cheeks to her breastmilk. Positively marvels over that milk. It's hard for me to stomach. It would be hard to take even if she were positive and kind regarding parenting advice, but she isn't. She's aggressive and degrading to those who parent differently than her. Oh, and not to mention her constant complaining of a difficult labor ending in a C section...like every preemie mom out there, I'm sure, it wrenches my heart and puts me into a state of disbelief that she would complain about that to me. (Even just once, let alone multiple times.)

I know it may sound silly...but she really hurts me. And I've even told her so, and she doesn't stop what she's doing. I couldn't breastfeed my son, or sleep with him in his infancy. It just..hurts...to hear implications that I am a terrible parent for not doing these things, when I wasn't even given a choice about it. I dunno. She's someone who used to be a very close friend, and now I find myself repelled by her. I don't really know how to fix the problem, and doubt it will be fixed at all. It's a strange situation...I hope I'm not sounding like a complainer...it's just refreshing to actually get to explain my feelings to someone who may understand a bit where I'm coming from...friendships are just one more thing that we as preemie moms must sometimes sacrifice..

joel2twentyfive.com said...

I can so relate to this post! I have a 29 weeker who has been home for two weeks. (I almost died from placenta accreta during her birth.) Nothing about me or my life is the same as it was before she was born. I'm so grateful that a friend directed me to your blog. It's so hard to find people who can relate and who know what it is to have a little miracle...a hard won, scary little miracle! <3

Jessi said...

Hey Alyson! Thanks for your comment. I am so sorry you have such an insensitive "friend". Sometimes I have to scratch my head, because I have absolutely no idea why someone would continue acting like that, especially after you have talked with them and told them how hurtful it is. My advice? Let that relationship go. I would probably hide them on FB as well. It is just not worth the pain it's causing. So sorry :(

Jessi said...

joel2twentyfive.com - I love hearing from you! So glad you found this little community. We've got to stick together!

joel2twentyfive.com said...

Thanks, Jessi!

Anonymous said...

I love this post!

I do have a question for you though, what happens when its someone you cannot cut out of your life, like maybe a family member?

Jessi said...

Thank you! That is such a good and important question. I feel that immediately after coming home from the NICU (and probably for the whole first year of being home), you are in survival mode. If you are still in that first year, is there any way you can create a healthy buffer between you and this person? Don't spend any more time than you absolutely have to with them? If you are a little further out from your NICU experience, I would probably sit down for a long and honest chat with this person about how they are hurting you. Maybe you have already done so, but I would lay some ground rules for their involvement in your life. The number one priority for you now is your little one. That means you need to feel as good and healthy as you can, going about your day. If the family member is very negative and causing harm? I would still step back out of that relationship. I am sorry I don't have more specific advice... best of luck!

Anonymous said...

The family member I am referring to is my Mother in Law. Who, I get along with rather well most of the time, but, she is a attention seeker. She also has made me feel rather down about not having my child with me after birth. I had a 33 weeker, because my blood pressure was so high I was going into organ failure, I know that the NICU was the best place for my child. She is an odd person, and anytime there is pity to be given, she wants it on her. That or she wanted to make me feel like I was ungrateful my daughter was ok, which is why I felt alot of guilt. I know her actions are wrong, but, this is a person I care for. I just feel our relationship now is toxic. I really would just like to cut my time with her down. Even though she is somewhat "back to normal" and not the "Think of how I feel,""Your over reacting, its good for her to be around germs" or "Just be thankful she is alive" person.

It hurt that when I needed support she wasn't there, and made me out to look like I was dramatic and over protective, when I was just following doctor's orders. Is it wrong for me to feel this way?

P said...

I absolutely love this post and I have come back to it time and time again. We are just 10 months post discharge so still newbies to the whole "life after NICU" thing but this post is the one that I keep coming to for validation. Thank you for writing so honestly and openly!

Jessi said...

Thanks P! Glad you find it helpful! I had forgotten about it, but will post to our FB page just to help any others dealing with relationships.

Jessi said...

Thanks P! Glad you find it helpful! I had forgotten about it, but will post to our FB page just to help any others dealing with relationships.

Danielle W said...

First off, this article is great and thank you for posting it. I have two very close friends who went through the unimaginable stress of having a child in the NICU and, though I haven't experienced it first-hand, I can try to help support them as best as I can.

I wanted to reply to Alyson Birt, though, because I believe we have the same "friend" (not really...but holy crap it seems that way!) Alyson - I am SO SORRY that this friend is being so difficult. I, too, had to recently end a friendship for those very same reasons. She was/is OBSESSED with her own breastfeeding abilities and incessantly posts, talks, texts about it to anyone and everyone. She knew discontinuing breastfeeding was one of the toughest things I had to do (due to a medication I was taking) and even though three doctors told me to stop nursing, SHE insisted I was getting the wrong advice. She, too, made me feel like a bad mom. I can't tell you how many times I had to bite my tongue when I would hear her tell people "formula is poison" and make snide comments about how much lower the kids IQ's of bottle fed babies would be as compared with her apparently Mensa-material children. Of course, she would always start her mean-spirited comment by saying "to each her own but..." (as if that really made what she was about to say less hurtful). I WAS friends with her because she used to be funny and thoughtful and easy to talk to...until she became a mom and got all breastfeeding psycho on everyone. I finally ended the friendship very recently because she was so toxic to me. I'm really glad I did.

Whether you decide to keep your friendship is, of course, up to you. But I know I feel a whole lot happier now than I did when I was her friend. At the very minimum maybe you could hide her FB posts!

Anyway I just wanted to reach out to you and let you know that you're not alone! I just can't believe there are two people who are so horribly alike in this world!

Take care!!!

BrennaP10 said...

I am really excited that you tackled this topic! I have also struggled with friendships gone bad because of our lives changing.

My 25 weeker forced my husband and I to look at things a it differently. No, you cannot come visit if you are not up to date on your flu vaccine. We also prefer a recent T-DAP because pertussis is so big in our area. And I realized quickly that I was putting in most of the effort on some friendships and when I stopped to redirect my energies, they fell by the wayside. It has been a freeing thing to finally accept that they just didn't get it and move on. Thank you for your honest and open approach to addressing relationships after the NICU

Mariel.ma@hotmail.com said...

I love you! My girl was born at 26.2 weeks...and I can relate to every single thing you wrote. Im mexican and there is no awareness on preemies over here. I thank you so much...I met a mom whose child weight was 695 at birth abd we hit it off instantly. Really I should have found your site earlier! But had no time, she just got home on christmas eve. Best whishes for you and incredibly gorgeous Jake.