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Love Letters

Coping with their child’s condition

Q. I am married and my husband is a wonderful man. I am very fortunate. We have had a very difficult few years mainly because of my inability to cope with several challenges we have faced. He has been a rock and I am now back on an even keel (with the help of my doctor). And I don’t underestimate how difficult it must have been for him to cope with.

But I am afraid I have worn him out. I think he has seen a side of me he doesn’t admire — that I can get overwhelmed. Now we are facing our worst fears — our child has been diagnosed with a condition that while not life threatening is devastating and will be life-long.

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My husband is getting very quiet. I try to ask him to tell me what’s on his mind and how he is feeling. I’m wondering if he thinks I’m not strong enough to cope if he falls apart but I feel I am more than able to let him lean on me now. He keeps telling me he doesn’t know how he is feeling. I’m also wondering if I am making it worse by trying to get him to face the situation.

But I am very afraid of the effect this situation will have on our marriage. We appear to be dealing with it in different ways — I need to talk about it and he does not want to. I am so afraid that if we drift apart now the distance between us will be too great to overcome. The situation with our child will not go away and we are facing the stress of frequent medical appointments long term. And of course the financial consequences are now adding to the worry. All that aside, we are of course just heartbroken.

I guess I was hoping other readers would write if they have been through something similar — I guess I need to know that marriages can survive anything.

I don’t know whether to give him space and just be there — or to keep trying to get him to talk to me.

Worried, Watertown

A. Your husband might not know how he’s feeling about all of this just yet. It’s very possible that he doesn’t have much to say right now. You can tell him that you’ll be there for him when he needs you, and that if he ever feels like freaking out, he can do that in your presence. Then you can let it go and concentrate on the issues at hand. You don’t have to give him space, but please give him time.

You can show him that you’re there for him by being emotionally present for appointments and tough decisions. My guess is that he’s compartmentalizing a lot of these feelings, but he will notice that you’re there — experiencing all of this with him and moving forward each day.

I assume that you’re talking to a professional about what’s going on in your life (that doctor or a therapist), but if you’re not, make that happen. Also take advantage of any resources that are available to you in the medical community (I’m thinking that there might be a support group for parents facing your child’s illness). And through all of this, act married. Do nice things for your husband. Remember to tell him you love him. Crack a joke and be playful. Get physical.

Marriages do survive this, but it takes developing a new routine that both of you can live with. For now, just remember to be available and show love. Hopefully he’ll begin to mirror that behavior.

MEREDITH

READERS RESPOND:

Divorce rates between couples who have severely disabled children are astronomical. Everything changes in your relationship dynamic, and even couples with the strongest bonds can break under the long-term pressures. Your relationship is already showing signs of difficulty, and you need help immediately. You both need counseling, and you should look into parents groups specific to the disability your child has.

ARNOLD_T_PANTS

Hubby needs to have his pity party, then blow out the candles and man-up here.

MMNNEE

There’s nothing in this letter that suggests that the husband isn’t being “man enough.” He doesn’t want to talk about it. That doesn’t make him weak, it just means he copes differently. And you know what? Realizing that your child won’t have a normal life can be pretty devastating, and that doesn’t go away.

JUST-ANOTHER-BOSTONIAN

I have a lot of sympathy for the husband. I have a special needs son and once we found out the full extent of his problems (lifelong) it was a bit much to digest. The last thing I wanted to do at the time was talk to everyone about it. Avoidance long term is bad, but short term it allows for processing.

ARMPIT

One little thing is nagging at me a bit. It almost seems like you want him to break down so that you can be “even.” Forcing him to delve into every feeling that he has right now may not be at all helpful to him. Let him cope in his own way.

MOVA

My son was diagnosed with juvenile diabetes at age 10 and we were both consumed with guilt over how we let this happen. I was supposed to be the protector of the family yet somehow this happened and I took it personally and went into a shell for weeks. Took a lot of support from our families to get thru this and everything turned out well. Letter writer, you can’t do this on your own. You’ll need support from both family and professionals. Get it now before your situation gets out of hand.

FLORIDACYNIC

As a parent of a child with cystic fibrosis, I know first-hand that people process devastating news differently, and that’s OK in the short term. When my child was diagnosed, I dug in and tried to learn everything about the disease while my husband kept his thoughts and feelings to himself. To maintain your balance and marriage, please be sure you and your husband make the time to focus on each other with date nights and other activities that you enjoy together. Also, please don’t try to guess at what he is feeling; that will make you crazy. Give him time to process the news and, in the meantime, focus on being the best you you can be.

SUNNIERDAYS

Column and comments are edited and reprinted from boston.com/loveletters. Meredith Goldstein can be reached at mgoldstein@globe.com.
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