I have noticed bursts of sadness and bursts of anger in the past twenty-four hours. I am pretty sure it is due to the out of control feelings that are often a part of the process of acceptance.
I received an email from my daughter's gynecologist late yesterday, informing me that she was trying to get a referral to a specialist approved, but believed that my insurance would most likely want my daughter to see a doctor at the university hospital close to my home...there is no specialist there, and when I called the hospital today to find out who she would be referred to, I had to explain what MRKH was, I had to explain what Mullerian Anomaly was. I am feeling some very strong emotions about not wanting to do this...not wanting this to be our reality. I am sure that this is part of the process of acceptance, but I really have never done well with this part of the acceptance process. I don't like to feel out of control, and I really feel this when I think about insurance companies and having to drag my daughter from one doctor to the next...why would we have to do this when we have the diagnosis and there are only a handful of doctors who treat MRKH. (I also hear a tiny voice saying, deep inside myself, "I don't want my daughter to have MRKH...I love her, but I don't want this to be real.")
Tomorrow is another day. I will call the insurance company and tell them that it is a waste of resources to send us for a second opinion....it will be the same as the first opinion...and then we will need a referral to a doctor who treats MRKH....so, let's skip the nonsense and just get right to the doctor who I will not have to explain MRKH to.
I wonder what I will do about that tiny voice I have been hearing. I wonder how to come to terms with that.
Monday, July 27, 2015
Saturday, July 25, 2015
Catch and Stop
My daughter was only diagnosed a little over a week ago; although I had suspected MRKH since June 25th when she was supposed to have an hymenectomy. Her gynecologist was unable to complete the hymenectomy because of what she found when she started the procedure. The doctor had started to cut into what appeared to be a vaginal septum, and then realized that it was something more, and ordered an inter-op ultrasound, and the radiologist stated that it looked like a Mullerian Anomaly. So, the doctor put in a few stitches in the place that she had cut, and stopped the procedure, and came and spoke to me. She told me that she is not sure what was behind the septum, and wanted to order an MRI to find out.
We went home, and my daughter slept in the bed with me for nearly a week as she recovered. During this time, we watched a lot of horror movies...not my thing, but she loves them...and spent a lot of time together. It was not until almost a week later, once my daughter went back to her own room and had her best friends over for the weekend, that I googled "Mullerian Anomaly," and started doing some research on what this might mean for my daughter. I suspected MRKH pretty quickly after reading about it on the Beautiful You MRKH website. I also started to hover around my daughter quite a bit, and she did not care too much for my hovering. After my daughter's MRI, the diagnosis of MRKH was made, and I told my daughter that she had MRKH Syndrome. And, I kept hovering. And, my daughter kept being annoyed.
Thankfully, I have some really close friends who are more like sisters to me, and I was talking with a one of them on the phone one night, and told her that I was pretty much stalking my daughter...making up excuses to go into her room to talk to her, asking her how she felt (a lot), and basically being a real nuisance. My friend, who is a social worker who works with CPS, suggested that I do a daily 5 minute check in with my daughter, instead of hovering and/or stalking. I suggested this to my daughter, and she thought it was a much better idea than me constantly stalking her, and asking her if she was okay...or even more bothersome to her, not asking her anything at all, but just staring at her, looking for signs of distress.
We started doing the daily check ins and it has relieved a lot of stress...probably for both of us.
This is how a check in usually looks:
We stand facing each other. I put my hands on her shoulders, and we look into each others eyes.
Me: Are you okay?
Her: Yes.
Me: Do you need to talk about anything?
Her: Not really.
Me: Are you sure?
Her: Yes, I will let you know if I do.
Me: Look into my eyes, and tell me.
Her: (Laughing) I am, Mom. I am okay.
Me: I love your face.
Her: I love yours, too.
The conversation varies from day to day, and it is usually pretty playful. The key part is that I touch her, and I look into her eyes, and she looks into mine. I feel better, and I suspect that she feels freer.
Like I have said in an earlier post, I have no idea what it is like to be her; nor do I know what it is like to be diagnosed with MRKH. I really want to honor her space to experience this as she is meant to...with minimal outside influence from me regarding how she is supposed to feel, act, and be. I have to catch and stop myself from pushing her to talk. I have to catch and stop myself from pushing her to experience life the way I want her to...without any suffering or sadness. I have to catch and stop myself from trying to fix this...put a band-aid on it...hug and kiss it away...this is not something that I can take from her, no matter how much I wish I could. Having MRKH is HER experience, and I have to catch and stop myself from wanting to take it from her so she doesn't feel any hurt, sadness, suffering or pain. I have to catch and stop myself from doing these things because, honestly, I think my interference will only cause the things I am hoping to protect her from.
This daily check in that we are doing helps me catch and stop myself. If I find myself really struggling to catch and stop myself, I call a close friend, or chat with a fellow mom in the support group for mothers who have daughters with MRKH. My daughter has enough on her plate, she does not need my interference heaping on more.
We went home, and my daughter slept in the bed with me for nearly a week as she recovered. During this time, we watched a lot of horror movies...not my thing, but she loves them...and spent a lot of time together. It was not until almost a week later, once my daughter went back to her own room and had her best friends over for the weekend, that I googled "Mullerian Anomaly," and started doing some research on what this might mean for my daughter. I suspected MRKH pretty quickly after reading about it on the Beautiful You MRKH website. I also started to hover around my daughter quite a bit, and she did not care too much for my hovering. After my daughter's MRI, the diagnosis of MRKH was made, and I told my daughter that she had MRKH Syndrome. And, I kept hovering. And, my daughter kept being annoyed.
Thankfully, I have some really close friends who are more like sisters to me, and I was talking with a one of them on the phone one night, and told her that I was pretty much stalking my daughter...making up excuses to go into her room to talk to her, asking her how she felt (a lot), and basically being a real nuisance. My friend, who is a social worker who works with CPS, suggested that I do a daily 5 minute check in with my daughter, instead of hovering and/or stalking. I suggested this to my daughter, and she thought it was a much better idea than me constantly stalking her, and asking her if she was okay...or even more bothersome to her, not asking her anything at all, but just staring at her, looking for signs of distress.
We started doing the daily check ins and it has relieved a lot of stress...probably for both of us.
This is how a check in usually looks:
We stand facing each other. I put my hands on her shoulders, and we look into each others eyes.
Me: Are you okay?
Her: Yes.
Me: Do you need to talk about anything?
Her: Not really.
Me: Are you sure?
Her: Yes, I will let you know if I do.
Me: Look into my eyes, and tell me.
Her: (Laughing) I am, Mom. I am okay.
Me: I love your face.
Her: I love yours, too.
The conversation varies from day to day, and it is usually pretty playful. The key part is that I touch her, and I look into her eyes, and she looks into mine. I feel better, and I suspect that she feels freer.
Like I have said in an earlier post, I have no idea what it is like to be her; nor do I know what it is like to be diagnosed with MRKH. I really want to honor her space to experience this as she is meant to...with minimal outside influence from me regarding how she is supposed to feel, act, and be. I have to catch and stop myself from pushing her to talk. I have to catch and stop myself from pushing her to experience life the way I want her to...without any suffering or sadness. I have to catch and stop myself from trying to fix this...put a band-aid on it...hug and kiss it away...this is not something that I can take from her, no matter how much I wish I could. Having MRKH is HER experience, and I have to catch and stop myself from wanting to take it from her so she doesn't feel any hurt, sadness, suffering or pain. I have to catch and stop myself from doing these things because, honestly, I think my interference will only cause the things I am hoping to protect her from.
This daily check in that we are doing helps me catch and stop myself. If I find myself really struggling to catch and stop myself, I call a close friend, or chat with a fellow mom in the support group for mothers who have daughters with MRKH. My daughter has enough on her plate, she does not need my interference heaping on more.
What is MRKH?
MRKH, or Mayer-Rokitansky-Kuster-Hauser Syndrome, is a something a girl is born with. I am so new to this, that I cannot pretend to understand how it happens...but, it happens while a female fetus is developing in the womb.
It is also known as:
What I know to be true about MRKH is that it does NOT mean that a girl, or woman, with this syndrome is not female. Girls with MRKH are 100% female, they have two X chromosomes, and most, by the time they are diagnosed, have gone through normal cycles of puberty (growing breasts and pubic hair, ovulation). My daughter has two healthy ovaries, and has the outward signs of being female. It is not until her gynecologist examined her that it was discovered that she did not have an inner vagina or a uterus.
Some women with MRKH have other issues associated with the syndrome that include kidney problems, heart defects, and spine issues. An ultra-sound last week shows that my daughter has both kidneys, and that they appear healthy. As far as the heart defect and spine issues go, we are not sure and will probably have to see a specialist to rule out these issues. However, I am hopeful that these things will not be an issue for her because she has been a very healthy girl for her 15 years, so far.
I had personally never heard of it prior to being told by my daughter's gynecologist, after a failed hymenectomy procedure, that my daughter had what appeared to be a vaginal septum, possibly a Mullerian anomaly. I studied Women's Studies a couple of years ago at a local university, and do not recall ever hearing of MRKH...too bad I didn't know what was in store for my family because I might have researched MRKH for my senior project.
*some of the information above was found at: http://ghr.nlm.nih.gov/condition/mayer-rokitansky-kuster-hauser-syndrome. A lot of the information that I have at this moment comes from internet searches, which include a website called Beautiful You MRKH and Facebook groups created to raise awareness of this syndrome and provide support for women/girls with MRKH and their families.
It is also known as:
- congenital absence of the uterus and vagina (CAUV)
- genital renal ear syndrome (GRES)
- MRKH syndrome
- Mullerian agenesis
- Mullerian aplasia
- Mullerian dysgenesis
- Rokitansky syndrome
What I know to be true about MRKH is that it does NOT mean that a girl, or woman, with this syndrome is not female. Girls with MRKH are 100% female, they have two X chromosomes, and most, by the time they are diagnosed, have gone through normal cycles of puberty (growing breasts and pubic hair, ovulation). My daughter has two healthy ovaries, and has the outward signs of being female. It is not until her gynecologist examined her that it was discovered that she did not have an inner vagina or a uterus.
Some women with MRKH have other issues associated with the syndrome that include kidney problems, heart defects, and spine issues. An ultra-sound last week shows that my daughter has both kidneys, and that they appear healthy. As far as the heart defect and spine issues go, we are not sure and will probably have to see a specialist to rule out these issues. However, I am hopeful that these things will not be an issue for her because she has been a very healthy girl for her 15 years, so far.
I had personally never heard of it prior to being told by my daughter's gynecologist, after a failed hymenectomy procedure, that my daughter had what appeared to be a vaginal septum, possibly a Mullerian anomaly. I studied Women's Studies a couple of years ago at a local university, and do not recall ever hearing of MRKH...too bad I didn't know what was in store for my family because I might have researched MRKH for my senior project.
*some of the information above was found at: http://ghr.nlm.nih.gov/condition/mayer-rokitansky-kuster-hauser-syndrome. A lot of the information that I have at this moment comes from internet searches, which include a website called Beautiful You MRKH and Facebook groups created to raise awareness of this syndrome and provide support for women/girls with MRKH and their families.
Introduction: My daughter has MRKH...
My daughter was recently diagnosed with MRKH. While the experience of having MRKH is hers alone, and I would never presume to know what it is like to be diagnosed with MRKH, nor would I ever want to take anything away from her by sharing my experience; the journey of being a mother to a daughter with MRKH is mine, and it is unique to 1 in approximately 5,000 mother...it is an important journey, and it needs a voice.
I am hoping that this blog will document the experiences of one MRKH mother in such a way that it informs, inspires, and comforts the other mothers out there who also have daughters diagnosed with MRKH.
Because MRKH is such a personal diagnosis and journey, I am not using my real name because I do not want to violate my daughter's privacy...some of you reading will know who we are, because I opted to share my identity with you; however, most of you will just have to do your best understand why I have opted to use a pseudo-name
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