I lost custody of my daughter--MS the deciding factor--how to talk about it?

[Maggie2015]

Hi, it's Maggie.

I wasn't on the board for awhile because I got the news that I lost physical custody of my seven-year-old daughter to my ex-husband, who lives in a rural state across the country from me.

For those of you who don't know my history, I had my first serious MS relapse in the rural state where my husband and I had lived with our daughter and worked as English professors. My husband initiated divorce proceedings. I couldn't get the care I needed for my MS where I was living without his support, and so I needed to resign my job and move across the country to Michigan with my daughter to be near my family for support and seek care nearby.

My ex-husband and I then went into a 10-month custody battle culminating in a trial in the rural state where we had lived, and his attorney successfully argued that because of my MS, and the unpredictable, progressive nature of the disease, it was not in the best interests of my daughter for me to be the primary caregiver. In his ruling, the judge stated that while I could not help having MS, it was best for me not to have the responsibility of a child and husband to care for (!!!!). He said that I was now no longer working (oh, I wanted to get back to work, but I really did "work" full-time on the trial, and I haven't been able to get my chronic back pain addressed) and that I only had a small apartment to care for rather than a home.

He also said it was clear I was unable to make the best decisions during a relapse and when under stress--this in reference to the fact that I moved away with my daughter--with my husband's permission--he was working toward a promotion (a year-long process in our profession) and he got it. The judge felt I should have stayed in the rural state and the town so that my ex-husband and I could have had joint physical custody, and so I could have returned to my job.

I have been in agony. After the ruling, I felt as though I could not breathe, couldn't survive another moment. Thank goodness my daughter is in day-camp--my boyfriend came and held me and let me sob and then burst out in anger and argue with the judge out loud--and my therapist has been on-call for me.

I am to give her back to my ex-husband on August 8th. I will see her 10 weeks out of the year, 8 in the summer, one for Thanksgiving or Winter break (alternate years) and one for Spring Break. We will be able to Skype.

I am starting now to re-enter the world. At first I stayed "in hiding" and only told my family and closest friends. But for the 4th of July my daughter and I went to my boyfriend's family farm for the weekend. His closest family members know, but there was a party, and neighbors and family friends attended.

I was having a "good" day with my pain. I had about a five-hour window in which I did not even need to have the tens on. I appeared perfectly able-bodied. I played CATCH with six kids, including my daughter, for heaven's sake.

And it came up, with different people, just in the course of conversation, and I quietly and calmly responded that I had just received the judge's ruling that I had lost custody of her, and that the main factor was that I had multiple sclerosis.

I ended on a positive note--that I was focusing on the fact that she was here with me now, and that I hoped to overturn the judge's ruling, but that I knew it would take time.

However, people were full of questions because: a. they either did not know what MS was, and b. I don't "look" like I have multiple sclerosis.

And explaining it was terribly difficult. It is not that I am not VERY USED to answering Questions a. and b., but it's that when I explained they still did not understand why I had lost custody, and I was trying very hard to stay calm, not get tearful or angry, keep things positive (it was a party) and keep the conversation short (my daughter was playing with the other kids, but she would return to me periodically and I did not want her to overhear).

I have been doing my best to explain it to her, but that is another topic. I don't think she's absorbed it yet.

I don't think I have either.

But my question is, how on EARTH do I talk to people about this? I have to do it--it is my last month with my daughter and I can't keep us tucked away--but I am obviously not handling it well.

Please help, if you can. And thank you for listening.

Maggie

[PattiHNC]

I am so sorry

Of all the crappy things this awful disease does to us, this is the worst thing I've heard of. I know I wouldn't handle it well at all. All you can do is be up front about it and explain to people exactly what happened. It is grossly unfair, and there are those who won't even begin to understand. It's hard enough for us to understand why we have to deal with MS and all that comes with it. Make the most of the time you do have with your daughter, and come vent here whenever you need to.

[shel67]

I don't have any advice for you... I just want to say how sorry I am. I'll pray for you...

[Maggie2015]

oh, I didn't know how much I needed people to empathize with me

PattiHNC and shel67,

Thank you for saying you are sorry. I didn't realize how much I needed other people with MS to empathize with me until you did--you brought tears to my eyes--the good kind.

It has broken my heart.

My mom said to me that when I was diagnosed she thought that would be the worst thing to happen to me, and whatever disability MS brought. But she said the same thing PattiHNC said--that this was the worst thing she could imagine.

My mom and dad came to the trial and testified that they would care for my daughter in the event of a relapse, but it still wasn't enough.

Oh, I married the WRONG man (oh, but I got my sweet daughter out of it) and I got the wrong attorney and the wrong judge.

Thank you so much for being so kind to me.

Maggie

[Seasha]

Hi Maggie - I am so very sorry to hear this devastating news. It brought tears to my eyes and my heart breaks for you. It's experiences like yours that makes me hate what MS does to not only us, but to our families too. The unfairness of it all.

I'm glad you have a great support system with your parents, however. They will help you get through the tough times. I divorced my first husband (who was a creep!) and was gained custody of our 5 yr. old son many years ago (pre-MS). Even so, I fell apart completely!! I remember my mom urging me that I had to be strong for my son. Just saying that made a big difference in my attitude. I urge you to do the same and enjoy all the beautiful moments you have to share with her.

You mentioned explaining MS to her and want to share a brochure from the NMSS to help you explain when the time is right. This is a pdf download, but you can call the Society and they will mail one to you. http://www.nationalmssociety.org/Nat...r-Families.pdf Phone # is 1-800-344-4867.

I hope you take a deep breath and just hold onto the knowledge that your daughter and you share a special bond that no one can tear apart.

Hugs to you, Maggie

[Jules A]

I am so very sorry this happened to you. Perhaps limit the details "Her father and I share custody" when you discuss this with people who don't need all the details to save yourself from having to rehash it over and over? Sending hugs.

[pennstater]

Reading this brought tears to my eyes, I am so angry that MS can be used this way.

I send prayers and hugs. I wish you continued good health so that you enjoy the remaining summer break to its fullest. Your strength will carry you and your daughter thru this. I admire you tremendously for dealing as well as you have.

I think Jules joint custody is a good answer for those not close to you. You can always explain more later when your daughter is with her dad, if you feel the need.

[shel67]

Your welcome Maggie. If what you were asking is what to tell people about why you don't have your daughter with you, we'll simply tell them because your ex is jerk, that you have MS and he chose to you it as a weapon against you. That you can care for her just find but your ex being the jerk he is decided to use it to win custody. If you don't want to share this, then really it's nobody's business. Your not obligated to tell anybody anything.

[Maggie2015]

such kind words and good advice--thank you

Seasha, pennstater, Jules A, and shel67, thank you so much.

Seasha, it is devastating--that's exactly the word for it. I keep feeling like I've experienced some kind of natural disaster--not like I've lost my daughter in a natural disaster--but that I look around and it's like there is nothing there. I can't imagine the future.

pennstater, thank you so much for the good wishes, and Jules A, "her father and I share custody" is a good, short answer that wouldn't rattle anyone.

shel67, you nailed it with the facts--that he is a jerk and used my MS as a weapon against me.

There were questions at the party that made me have to explain she'd be with her dad across the country--"are the two of you still looking for a bigger place?" (we were--I'd thought we could with child support), and then, along with that, "will she be going to the same school next year?" (because I'd had some complaints).

And oh, my goodness, beyond losing my daughter (as though there is a beyond), the judge could not have been more cruel in his ruling regarding child support--I am somehow paying almost a quarter of my income. I lost my health insurance in the divorce and when we were trying to settle my attorney persuaded me to give up my stake in the house, the cars--everything I'd worked for. My attorney was just very bad--she didn't imagine the worst-case scenario and work to protect me--my ex's enormous raise that comes with his promotion wasn't factored into the child support, and neither was the loss of my health insurance, and both are supposed to be.

When I found out that I'd lost custody and recovered enough to think clearly I asked my attorney if we could get a child support modification, and she said we'd have to wait at least six months. Then she told me she was closing my case, that I still owed her money, that she'd send me the bill, and that I could re-hire someone in her firm for the child support modification.

I spent $20,000 on the trial (almost all of my retirement account, with the penalty for early withdrawal and the tax penalty factored in).

I was lucky I had the money to do it. And I should take responsibility--I should have thought more about the worst-case scenario--I was just so focused on getting custody--it was too much of a nightmare to imagine not getting custody.

But I just feel like my life is in ruins. And I keep looking at my daughter's sweet face, memorizing it, smelling her hair--thinking, how do I keep her smell when she's gone?

OK, now I'm starting to cry.

Thank you for your help.

Maggie

[PattiHNC]

thinking of you

I just can't stop thinking about this. I am so blessed to have a wonderful husband and grown, supportive children. You seem to be handling this so much better than I would. What really gets me is that you parents are available to help, does this mean nothing to the judge? And so what if you live in an apartment? Plenty of children grow up in apartments. I'm so mad I could just scream for you. I am praying that you have the resources to contest this and that you get a better judge next time.

[WillyNilly]

My Heart Bleeds For You Maggie...

Truly it does.
I've been avoiding the boards myself for awhile, not signing in and participating anyway.
I saw this I assume shortly after it was posted because there were no responses yet. The "flashbacks" started up and I had no idea what to say.
My girls are all adult now but had been removed from my home when I was in the poorest condition of any setback and the court decided "I couldn't protect them" from my X- who was IN JAIL by the way!
And what does the Foster System do? Put two of them in a foster home that was clearly visible from the friends house HE was released to and remained living in!

I can't say I know how you feel because I did get the younger two back after 7 1/2 months. The oldest remained in foster care until she aged out but we were able to remain close because of living nearby.
I am so sorry this has happened to your family. Use your Skype as much as you can to stay involved in her life. I can only pray that the farther you get from "the moment", the easier it will become to live with day to day. I DO know how difficult that will be.
Again, I am so sorry and I wish there was something I could say to make it better.

[Thinkimjob]

Nothing else to say except I am so sorry.

[polanwil]

I am so so sorry .This is just not right.

[REG53]

Just wanted to say how sorry I am also.

[Maggie2015]

thank you--and hopes of getting her back

Oh, REG53, polanwil, Thinkimjob, thank you so much for your sympathy.

PattiNHC, it made me feel so supported when you said you couldn't stop thinking about this. Of course, neither can I.

You ask good questions about the judge. It is a very small town and my ex-husband has a lot of power there. I honestly believe the judge WANTED to return my daughter to my ex and was glad to have MS as a reason.

WillyNilly, thank you for sharing your experience. I know what you mean about "flashbacks." Everything for me is a trigger right now—but I was digging in the bedroom closet yesterday and I saw the dress I wore for the trial. I felt like I was going to throw up.

I am so sorry for what you went through as well. I am beginning to think that in a lot of cases the system is “broken”—that it’s not just me.

I have been beginning to think that I might get her back. My ex-husband was never the primary caregiver (this worries me a great deal for too many reasons to list here, because she’ll be in his care) but today my therapist said my best chance might be that once he realizes how difficult it is to care for a child full-time he might give up.

I have thought about going back to the town just to be near her—even if it means losing my family support, access to healthcare nearby, my boyfriend (our divorce took a year and a half, and I didn’t meet my boyfriend until 10 months later) and a lot of other awful things.

But when my ex-husband started treating me badly, which happened prior to my relapse (though it worsened terribly during), and he refused to go to couples counseling or to a therapist to deal with his anger, I got up the courage to tell him I thought I was going to have to leave him.

And he told me “If you ever leave me, I’ll take our daughter,” and I said, “How?” because I WAS the primary caregiver, and he just shrugged and said, “because you have MS.”

It was a chilling moment. It happened over two years ago.

So he did it.

My therapist also said that if he realizes I am not coming back he may, again, give up and give me back our daughter.

She thinks at the very least I need to stay here in Michigan, get strong, rebuild my life by getting my pain under control, getting a grip on my financial situation, hopefully getting back to work, and experiencing love from my family and my boyfriend and his family, and to in the meantime as WillyNilly, you said, use Skype to stay as close as I can to her.

She said then I can think about whether or not to go back.

But it is a horrible situation, and PattiNHC, I’m not handling it as well as you would think. I am only staying strong for my daughter. I don’t want her last memories of her time with me here to be of me angry and heartbroken, though I am.

It helps so much to come here to vent, as PattiNHC said, and see that you are out there listening and caring. I feel so much less alone.

Thank you.

Maggie