i don’t know how to do this

Can I just say that spending one’s life in a single room really sucks? Can I say that when you do this with your child who has cancer and your wife who is PMSing and yourself who is PMSing, it sucks even worse? Seriously.

J and I have been doing pretty well for awhile. We’ve been working hard on our relationship over the past year, working to find new healthy behaviors, and it has been working well. We’re stronger in some ways than we’ve ever been. Other things we’re still addressing–or were. You see, a child with leukemia changes everything. There is no working on one’s relationship in a hospital room when one person needs to sleep by the child’s side while the other sleeps in a house hosted by a nonprofit almost a mile away–or when nurses and doctors and nurses’ assistants and respiratory therapists and janitors and social workers and med students are coming in and out at all hours of the day and night. It’s really maddening.

When we first got BG’s diagnosis, I couldn’t imagine how people split up during a child’s illness. Now I’m understanding that it happens because an illness like this creates so much distance between a couple, some of it physical, some of it emotional, all of it detrimental. It doesn’t seem fair. But that’s my mantra these days, isn’t it? Nope, none of this is fair. Not one little part of it–well, except for all the beautiful support we’re getting; I really can’t go more than a few minutes without mentioning this–but the rest of it isn’t fair, and I don’t really know how to change that, how to shift the balance. Now I’m beginning to wonder how relationships survive this.

Perhaps one of the biggest issues we’re facing right now is that BG is outright rejecting J on a regular basis. He says to her, “No Mama. I don’t want Mama,” and then turns to me and says, “I need you! Mommy, I need you!” It’s heartbreaking. He lashes out at her physically too. Our theory is that he needs someone safe to be mad at, that she’s that person, and this is yet another of those extraordinarily unfair scenarios. She tries to keep it all in perspective, but I know he also breaks her heart at least once a day. There are those days when he reaches for her readily, but those days are few right now, and I know it’s taking a toll on her. I wish I could fix it, that I could tell him she’s not the one to be mad at, but he doesn’t get that, and he won’t until he’s older. That’s just our reality. All I can really do is step out sometimes, give them their space to find their way again. I’m going to try to spend a night a week at the house where my wife is now to give her an opportunity to feel less like the outsider and me a chance to get some uninterrupted sleep.

These are such tough waters to navigate, and I’m guessing they’re difficult no matter who you are. I hope we can pull from our strengths to get through this.

 

 

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15 Comments

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15 responses to “i don’t know how to do this

  1. No, none of this is fair.

    You’re doing the best you can with what you have – a lot of smarts, a mutual desire to do right by each other, and your sweet boy in the center of your shared world.

    My heart hurts for all three of you, and the image of BG rejecting J makes me so sad. The fact that you’re cognizant of the divide and are trying to find ways to help them bridge it… seems like the absolute best you can do. Hoping that a member of the child life team can support and encourage you in this? It’s got to be very common – preferring one parent over the other during times of extreme stress.

    Hugs, mamas.

  2. None of this is fair. But keep writing. As you can. Keep connecting. You will quickly find your community of people who have done this or are doing this to work through the really hard parts with while the rest of us are here from afar holding you up.

  3. Yes, all of this is so ugly and unfair. You are all doing the best that you can.

  4. tbean

    So unfair and so horrible. I thought, when I read your caring bridge update, about how absolutely impossible it must be to try and live within the confines of one hospital room. I remember living in mine for 9 days before I delivered and I felt like I was losing my mind. I can only imagine that is but a fraction of how hard it is for you all now.

    I’m glad you can trade off nights in BG’s room and have another place close by to sleep. Hospitals are no place for good sleep and I hope that if J can spend nights with BG and you can get breaks, it will help BG to turn to her for comfort too. Hugs to you all.

  5. Deeply sorry, it all sounds so impossible. You are all under so much stress right now. I don’t think anyone who hasn’t lived it knows what it’s like. I hope you can get through this very rough period, even if you need help on the other side. Right now I think you have no choice but to take it day by day and realize that whatever happens now, during this terrible ordeal, doesn’t necessarily indicate what things will be like later.

  6. chunkandmommy

    I am so sorry T, but I am sure you are tired of hearing that. I am here for you should you need a voice about the relationship aspect and about co-parenting when the child is rejecting the other parent. Our circumstances are vastly different, but the parenting and heartache are the same. (I hear on a weekly basis, “not that mommy”) I think allowing them one-on-one time will be good for all and your wounds and worries are valid. Keep writing, processing, yelling at the universe. It isn’t fair, and sadly, it rarely is. Hugs mama.

  7. Luckily all that work you and J have done on your relationship is still there. This is just going to be one of those times that is really difficult in every way. Is there a family worker there that can help a little? Even just lend an ear?

    We have often struggle with Pnut preferring one parent over another. It is exhausting and painful even without dealing with hospitals and a serious illness. Hugs for both of you!

    One room…! Eek. Do you want mail sent? It would be something to open while in the room.

    I wish I could do more but at least know that I am here reading and cheering for you.

  8. T, is your family still nearby? Any chance they could babysit for an hour or two (hell, even 15 min) while you and J go collapse on a park bench together or something? I’m so afraid of unwittingly sharing kid-germs with you guys, but my Fri, Sat, and Sun afternoons are generally free (without babies as long as N isn’t working, and when my sister’s back in town she could watch them while I visit you). Maybe I could disinfect as thoroughly as possible, mask up, and come relieve you for awhile on one of J’s days off?

    Switching off spending nights with C is a great idea. The first night or two will probably be really rough, but will hopefully help balance the relationship a little. There’s no squeezing an extra bed/recliner into the room so you can both stay sometimes, huh? Maybe sneak in an air mattress…

    Would you guys like us to skype or record our music class for you? Trying to think of ways to help C feel like he’s leaving the room for a bit.

    We miss you guys.

  9. This is very unfair. The preference thing and must be so hard on your wife (and you). You’re explanation for it sounds spot on but I’m sure that’s little comfort when it’s happening.

    Much love. One day at a time.

  10. your family is in my thoughts. sending you all hopes for strength and healing, all around.

  11. Raising kids is tough on a relationship in the best of circumstances..you and J have a tomorrowgh road. But be gentle with each other and yourselves, i can only imagine how hard this must be. I am sorry you are having to go through this, you are a strong couple.

  12. I can’t even imagine how hard this is on all of you….praying that things get much better for you all very soon….

  13. Lex

    So sorry things are so unfair and heartbreaking. My thoughts are with all three of you, always.

  14. Not fair in the least. And yeah – stressful things like this are so good at tearing people apart when they need each other most. 😦 Sending much love to the both of you – remember, in all of your taking care of C, to take of yourselves and each other. ♥

  15. I can’t imagine. Yet your writing makes it very clear. You are in an impossible situation to navigate. I am thinking of, and praying for your family. Thank you for sharing all of this.

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