How far Do you Have to Come to Go Back?

When I got back from our family holiday I was dreading the backlog of  ‘To the Parents of Mr Boo’ letters that would be on the doormat. Any parent of a medically fragile or disabled child will know what I mean. The endless appointments that take so much juggling to attend, the dashed hopes when it’s not the appointment you’ve been waiting for for months and really need. The summaries of appointments that coldly reduce your child to a set of terms, conditions and prognoses. There were plenty of those, but the letter that really floored me was slightly different.
I knew what it was before I opened it. You see they’d addressed it to Boo but given him my surname (The Grumposaur and I are not married). It’s the name he went by in hospital even though we begged them (for the sake of my struggling-to-bond partner) to give him his father’s name, the one he was legally registered in long before he came home from the hospital.
Yes: this letter was from his NICU. And this meant one thing: an invitation to its annual reunion. It’s not in the NICU – it’s at a local school – and it’s a chance to reconnect with people and do some modest fundraising via tombolas and raffles.
When last year’s invitation came we had only been out of the NICU for a couple of months. Too soon, I thought. Next year, I thought. Well now it is next year and it’s still too soon. I can’t go back. Not even to a school where NICU staff and its wee graduates will be. I can’t do it.
Why? Please don’t think it’s that I’m not grateful to the staff there. I am. But in the four weeks we were there I didn’t strike up the same kind of relationships I did in the first NICU he was in. And as for reconnecting with other parents and children? Well, that assumes we connected in the first place. Sadly, we didn’t.
I read lots of premature baby blogs and am so touched and made a little envious (if I’m honest) when reading about NICU friendships. I didn’t make any. You see our local NICU, to which Boo was transferred at 32 weeks was not a high-level NICU. When he was moved, he went into intensive care (a blacked-out and totally depressing room). There were two other babies in it. They both were out in a day or two. Most seriously ill or very premature babies born there were transferred up to London or to other hospitals like the one Boo was born in because I work so far from home. As a result, Boo was always one of the most acute cases there.
Most babies who came in were in for a few days only. Their parents were no less worried, they were often extremely and visibly upset, but when they poured out stories while waiting to be discharged, about how they’d just had the worst 48 hours of their life and then found out Boo had been there for 5 weeks already, they ceased to be able to talk to me. It wasn’t a competition. But I got the feeling most parents thought we trumped them in the misery stakes. I wanted to hear their stories because I wanted people to talk to, because I wanted people to listen to me. But the minute people knew about Boo’s prematurity, the brain bleeds, the meningitis, or saw people running to administer facial oxygen after a reflux-related desat they stopped talking to me.
That NICU was one of the loneliest places I’ve ever experienced. I was there for hours every day but I never got used to it. All I wanted was for him to get out. And now we are, and grateful as I am for all they did for us, I can’t go back. I can’t be one of the parents of the children who didn’t get away with it. All the 27-weekers and just fine now little folks people tell me about in conversation all the time to give me hope about Boo.
I am proud of Boo and all he has achieved and genuinely happy for all those babies that got away with it. But I don’t want to be reunited with the pain and the loneliness. I can’t go back. I wish I was strong enough that I could, but I can’t.
We’ve all come such a long way in the last 18 months. Just not far enough it seems. Maybe next year. Maybe…
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18 thoughts on “How far Do you Have to Come to Go Back?

  1. Orli D

    Never go back. That’s my motto and I’m sticking to it. Never go back.
    As usual your post made me cry, and wish there was some way to take away the pain. But there isn’t. I want to say more, but I can’t. Because it is not a private space, and what I have to say is private. I will just say that – don’t feel that not going back means you are weak or “not strong enough”. Honestly, I don’t see the benefit in reliving one of the hardest, if not the hardest, periods of your life, of jumping head first into the parents competition. Why would you? Why is there strengths in that? Surely the strong thing is to stand up and say – no. We have moved on, and are not going back. x

    Reply
    1. Carol Holbrow

      There are many things in my life I have no wish to go back to, and my son’s first year is one of them, so I totally agree. Keep strong, keep going forward, going back is not helpful for anyone. What’s past is past. Keep it there. Make today good and look forward to a good new tomorrow every day x x x

      Reply
      1. mrboosmum Post author

        This is wonderful advice. I feel like I should print it off and pin it somewhere prominent. Thanks so much for reading and commenting.

    2. mrboosmum Post author

      Thank you, friend. I’ve really taken your words to heart since I first read this comment. And I totally see what you mean about the strength in not going back. It’s not just that I can’t. I won’t!

      Reply
  2. gemgemmum

    Totally understand. I chatted to a couple of mums when expressing but the nurses, cleaners etc became like friends more.

    We too were the ones with the poorly girl who had been there for months and lots of procedures and operations 😦

    We went to the neonatal reunion but was awkward as didn’t really know anyone and gem still had her ng tube so stood out, to me, from the others. I have since met mums who were at the party and coincidentally on looking at their pics on fb of the party – our girls are beside each other!

    x

    Reply
  3. redpeffer

    I don’t blame you at all for not wanting to go back. I don’t go to reunions or anything like them. I know I’m unusual, but I prefer to look to the present and future not the past. Don’t feel bad and don’t place extra pressure on yourself.

    Reply
  4. Helene

    You have to come a really long way to do back and even then, only do it if you want to! Love this post.

    What is it about the misery associated with a sick child that brings out a competitive edge? Ok I admit to being horribly competitive generally in most aspects of life (notorious for it and slightly shameful at times too). I sort of understand the working-class-girl-made-good bit! However the idea that my baby’s sicker than your baby somehow works is just plain odd…..and yet?

    How many mums of premature babies can honestly say that they have never curled a lip (even if just metaphorically) at another mum who has cooed

    “Wow, yes! Mercedes (yes, we are in North London!) was 2 weeks premature too! Twinsies! It wqs terrible! We were in Special Care for 48 hours with jaundice. I know just how you feel”

    You smile and coo back something soothing and polite and but fact want to yell “WTF You, lady, have no idea how I feel!”

    I don’t want to compete and I know in my heart that the shock, fear, anxiety and sheer desperation any parent feels who has a child who is in any shape or form ill or fragile is real, tangible and deep, deep, deep felt. BUT the reality, whether we like it or not, is that there is a hierarchy of misery, hurt and arduousness in terms of journey and whilst it isn’t a competition there is something important and respectful and honest about acknowledging the scale and enduring nature of some parent’s journey. We need to be real.

    Reply
  5. nicucentral

    Love your honesty. As a NICU nurse, I often find it unusual that as many people DO want to come back. I think it must be something similar to the high school reunion (to which I personally have never gone!) – some people go to show off, some go to reconnect with genuine friends, some hope to make new friendships, but many just don’t go because they just don’t want to. Bravo to them!
    I think the NICU reunion is only something to attend if it would bring you joy. If it would bring you down, you’re not weak. You’re smart and self-aware.

    Reply
    1. mrboosmum Post author

      I read this comment when it was posted but I’m a little behind in replying. I wanted to say how much this buoyed me up when I was feeling bad about my decision. And the high-school reunion is a really good parallel. From now I vow to focus on the joy!

      Reply
  6. Pinkoddy

    You know I couldn’t go back to a school reunion, which may have even had people there I liked. Why do you feel you should be going back? I am sorry to hear you didn’t have a more positive experience with the other parents there. #PoCoLo

    Reply
  7. Caz Stone

    It sounds like you’re doing what you need to do to take care of yourself and Boo. It’s one of those appointments you actually get a choice whether to attend or not, so either way is fine.

    Reply
  8. ferreroroche123

    I can’t imagine the fear and anxiety you must have felt in that place. Must have been so tough and don’t blame you for wanting to stay away. Best to stay away from a time in your past that brought you pain and focus on today and your future. #PoCoLo

    Reply
  9. christaterry

    Reading this makes me wonder… we were among the lucky ones, in and out of the nursery in two weeks which felt so long to me but now I know were blessedly short. And there were parents of a micro there, just admitted, and I went up and started talking, telling them how amazing the staff was, and only later I realized how different our stories were. I always felt embarrassed, that they must have hated me eventually for acting like we were even in the same universe. I managed to follow their daughter’s story – she went home just fine. But maybe, just maybe, they didn’t hate me for welcoming them to the NICU. Here’s hoping!

    Reply
  10. mrboosmum Post author

    Reblogged this on Premmeditations and commented:

    For #ThrowbackThursday a post I wrote this time last year and which I am struggling with again this year. Have you gone to a NICU reunion? Did you stay in contact with SCBU or NICU friends? And what does it say about me, I wonder that I can’t go back. I get chills every physio appointment for Boo when I look up and see the NICU window by Boo’s cot space even now. Would love your thoughts.

    Reply
  11. mushywalnut

    Gosh another amazing honest post.

    Your feelings about NICU reunions are why I didn’t join any pre birth / post birth clubs; the stories would not have been same. In the run up to the birth we knew our daughter would be going straight to NICU so we didn’t even buy her stuff for her to come home in, just incase she didn’t make it.

    I think you’re right not to look back if that’s not what you wanted. Though we were in NICU for a short time, I didn’t get a chance to talk with many parents. I went to one of the monthly coffee mornings and it was good to go along and find out if people felt the way I did about certain things. But other than that, no reason to look back.

    You have a lot to look back on, but more importantly tonnes to look forward to and that’s what you should focus on. Take care.

    Reply
    1. mrboosmum Post author

      Thank you. I think that is a big part of it. Not wanting to look back too much. You can’t help it, of course, but I don’t feel I want to force it. I can summon up those feelings again readily enough. And I think you’re right, the support network is the important thing, and I feel that I have that now through the blog. I am fortunate enough to be in contact with lots of people who understand and who may feel similarly. People like you. I am very grateful for that.

      Reply

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