Personal Question

[admin]

I wanted to ask something personal and I do not want to offend anyone, just honestly looking for some true to the core answers. Here goes.....
Among the families that visit here, is the participation between mother and father pretty equal in dealing with these injuries or is it one-sided? I only ask because I myself have found it to be very one-sided in my home. My husband is almost null and void when it comes to assisting in any way, whether it be physical or emotional. I am the one that does the ROM, goes to all the appts and is truly trying to find anything possible to make the most out of my child's recovery. He deny's being in denial but I think that's not the case. True, I am the pessimist in our relationship but I think I am also the realist. I pray our child will be fine and I hope through all of my efforts that holds true. My problem is noone has a personal stake in our baby's recovery, it's only us and mostly me. I have taken on the stress burden and sometimes it is too much to bear, but I do it because if I don't noone else will.

Am I alone in feeling this way? I know everyone handles stressful situations differently, but am I the only person in a one-sided relationship in regards to helping my child?? Anyone else out there feel the same? And is this at all common?

Thanks in advance for any responses.

[jkenglert]

My husband is quietly supportive and does let me handle it. I don't think he means to not be actively involved and will be if I put it in front of him. He goes to appointments and reads articles I give him. I just have to work to keep him involved.

Hang in there and know that you are doing the right thing for your child.....

[admin]

Perhaps you should talk to your husband about how you feel. Maybe he doesn't realize it and if you spoke about it, he would understand and offer more help. My husband is 100% involved when it comes to my child's injury and I couldn't imagine it being any other way. It is hard enough to deal with this injury, so you deserve the help and support you are craving. I wish you the best and hope that he starts to help soon.

[PeggyUBPN]

in general, I am not making a blanket statement, I think that men deal with this injury differently than women. I don't think that it's because they don't care or don't want to be supportive, but most men want to "fix" what is broken. If they can "fix" it, then it's probably easier to let us women handle what needs to be done. I'm sure they internalize their fears, etc.
My husband is supportive of everything that has to be done, but he doesn't "do" anything without me asking/telling him to.

We had a "father's workshop" at the previous camp. I think the men found it very beneficial. I wish I could give you more insight on it, but I wasn't there and my husband is not communicative in any area of life, so all he said was: "yeah, it was really good".

Peggy

[BrokenWingedAngel85]

My husband is the same way. He is a wonderful father, and asks questions about Daniel's progress in therapy. He is very concerned about him and wants him to get the best care possible. However, because I am currently a SAHM, I am the one doing 95% of the "work" (driving Daniel to appointments, making calls, doing ROM exercises, etc. ) My husband does try to come to the occasional OT or doctor appointment, but it just makes more sense for me to do it. I also think he's in a bit of denial about how serious these kinds of injuries are; when people ask him about Daniel's injury, he tells them it's just like having a broken arm. It's like if he pretends it's nothing, it will go away. Don't get me wrong, he's very proud of our son and always will be, no matter what. I guess he's just dealing with it in his own way. Ok I'm going off on a tangent now =)

Johanna

[Chloesmom]

Taking into mind that we are very new to this problem and still very shocked my husband is in knee deep with me. He takes turns doing ROM and caring for her at home. However, I am the one who does the research, talks to the insurance, makes appointments and does all of the "arranging". He goes with me to appointments and takes off work to do so. He asks tons of questions and worries about her just like I do. At first he was a little stand offish about doing ROM cause he didnt want to do them wrong but I talked to him and went through each exercise with him and he also asked the PTs some questions. I dont know what I would do without him. Sometimes this BPI stuff has been so scary I would like to abandon ship and throw it all in fates hands. That however is a fleeting moment and it is quickly replaced with my obsessive will to do anything I can to make this better for my little girl. ITS VERY intimidating to deal with all of this and both my husband and I have been walking steady but with apprehensiion.

[BIGJAVSMOM]

First of all- I want you all to know that alone or with help you are doing a great job. I have help from my husband, older son and sister and brother- in -law. We have all taken the time and energy to learn all of the ROM, what Javier will and won't tolerate and his favorite things. I am so thankful to have this support. My husband and I usually go to the appointments together. If we can't, we just alternate who goes. That way we both get to know the doctors well. The only thing my husband won't do is give Javier a bath, which I fully understand and he still dresses him afterwards. Sometimes, we don't agree on treatments. He thinks we should sling his arm to give his arm to give his shouldera rest from the constant "dead" weight, but I don't. I also think my husband is willing to keep getting operations, where as I am still debating. So just keep pushing and maybe they will take a more active role. I always say that one person can't do everything, because no one is promised tomorrow. So, all parties involved need to know the doctors, therapists, and exercises.

marlyn

[Angela Butterfly]

It was my 3rd child born LOBPI. Oldest not yet 3 1/2, 17 months, and newborn with severe injury. The best I could get was that he would drive to the Chicago Appts. I did all the rest.

After he spent every dime we had and then got a 2nd mortgage on the house, he quite his job as a union bricklayer when my children were ages 2, 3 & 5. Believe it or not I actually opened, owned and operated a Commercial, Union, Subcontracting firm.

I owned it and he and other tradesmen, hired local and out of the union hall, were my employees. I had worked professionally (financial industry) for 10 years before I had my children. At the time it seemed there was no other choice, but do open the business.

So I did therapy, drove to weekly O.T. appts (usually closer than chicago, but still 40 to 60 mile drive) Did all the parenting, was required to do all the yard & housework, etc.

To make a long story short, I finally got away when they were in 6th grade, 7th grade, and 9th grade. The business was closed after 10+years. As the years went on I sometimes had as many as 20 weekly employees and 3 jobsites going at the same time. I RAN through my days, and the girls were right there with me all the time.

The only thing I can say is, they are now becoming Professional women themselves, and all in college. Suppose I shared too much, but that is truthfully the way it was. My oldest is well on her way to becoming a Doctor DVM, my middle graduates in August with her Bachelors of Radiologic Science, And my youngest has one more year and she will have her Bachelors in Art Education. We did survive, and yes I was more than overwhelmed.

[katep]

Hi Null,

Well, you've described our family to a "T" except that I've gradually learned not to see that as a bad thing. It's sort of a "division of labor" emotionally, mentally and physically. It's really been "my job" in the family to research options, make doctors appts, do therapy and ROM, etc. My husband has other very important jobs, primarily working his a** off so I can stay home! He drives 45 minutes (or more) each way to support us so we can stay where we are.

He definitely has never felt the same way about Joshua being injured as I have, or really shared the same emothions about it. Part of that is because he didn't carry this precious, whole, UNinjured child for nine months. But part of that is just that he is a man, and I am a woman. My husband has an optimistic, "so what... he'll just have to learn to deal with it", "look on the bright side" approach to this injury which drove me nuts at first. But I know that in the long run Joshua is going to *need* that perspective just as much as my obsessing about what doctor to see or treatment to have.

I need my husband's steadfastedness. We would never have made it through the first year if we had *both* been paralyzed with grief. While I was drowing in post-partum depression, he was still putting in the hours and keeping our lives going. And his perspective will get more and more important as Joshua grows. While I'll be sitting there bluthering because I'm afraid Joshua can't keep up with the other kids, it will be my husband who is encouraging him and urging him to do the best he can regardless. When I'm the one who wants to go home and just hide in a dark room because I can't deal it all, he'll bring out pictures of how cute Joshua was, even when he was little and his arm didn't move at all. He's the one who gets us out of the house and off to the park to just have fun. He's the one who helps me stay centered. I tend to wallow in it, along with doing most of the research and pushing for the right treatment (they sort of go together!). I need my husband to be the strong, "keep moving forward" person he is, or I'd easily get overwhelmed.

Sometimes it *is* very lonely. You feel like you are in this horrible place and your husband just will not "join you". At times, I'll admit I was very jealous of how oblivious my husband was to all that was and could go wrong! That's why support groups are so helpful and so important. I have a group I go to every week with mostly moms (but the occasional stay-at-home dad!) who have kids with all sorts of problems and disabilities. I have friends who understand and who will listen. And my dear husband *will* hold me when I just need to cry... so long as I make sure to help him understand I just need a shoulder to cry on and don't expect him to make it all better. He doesn't cry *with* me, but that's ok. I know that he cares, he is just different than me.

I hope you can find peace in your relationship; marriage is hard enough without this too! I'm sure your husband does feel a lot of stress, especially in seeing you unhappy (they seem to have such a hard time with that... ). And he probably is much less informed, and thus able to be more optimistic than you are. But there are true benefits to that approach, as well.

Your child needs *both* - realistic, cautious pessimism and blind optimism and faith. Sometimes, like when finding a doctor or making medical decisions, it *is* critical that one of you be an ultra-informed realist. Your approach is probably better now. But someday, I venture that your child might benefit more from your husband's "blind optimism" towards their disability. There will be times when your approach won't be the best, and that's OK, too.

Kate

[admin]

Our situation started out one sided. With me the mom doing most everything. Alot of it goes to our type of personalities though. I was the one looking all over the internet for information, going to the library, getting on the message boards. I had to know myself what was going on and what we needed to do. Over time I have passed on what I have learned to him and he has come more involved. He was really scared of doing something wrong and hurting our little girl when she was a baby. She would cry during ROM and he would cry as well. We talk things through and alot of his lack of participation in therapy was just not feeling secure that he was doing it right. Once we got over that hurdle he has become better than me to rember to put her splint on before bed and to incorperate therapy into regular play time. He also comes home now from time to time with a new toy saying "I thought this might be a good therapy toy."