An information and support resource for families with children, teens and young adults who have a DSD
The Lady Lump Diary
The first instalment of The Lady Lump Diary was written in September 2010 by the mum of a little three year old CAIS girl, Olivia. The little girl was diagnosed when she was a few months old following an inguinal hernia. One gonad was removed and the other relocated to the groin area for monitoring. Olivia is an engaging, bright and beautiful girl and we are delighted we can share her adventures with you.
Dear Lady Lump diary,
Well, earlier today Olivia just ran into my room almost in tears. I had been over listening to a few phrases I could hear come out of her bedroom. She was playing dolls with her close neighbour friend. I could hear things like "babies", "getting married", and "in my tummy". I thought about dropping in, checking on the conversation, intervening if needed. But then I didn't. I thought, "She knows this. I'll let her feel it out, and I'll make sure to recap with her after her friend leaves." I don't know why. I just did.
It turns out her friend said that all people who get married get a baby in their tummy, and that Olivia would too. She said not having a "pocket" is impossible. She had never heard about adoption. So it was not possible either. That's pretty big stuff for a 6 year old.
I let Olivia explain it to me, watched her shrink against the wall, unwilling to let me hug or hold her. She was questioning me. Had I told her a lie? I could see it in her eyes.
After I explained it all to her- told her that she knows the truth, and that her friend did not because her mama had not explained it to her yet, she seemed to feel better. She requested that I go tell her friend... so we all sat down...played with dolls, and I explained. I explained the same way as I had explained to Olivia...that most girls have pockets to have babies in when they get married (like she had been told), but that God was in such a hurry to get Olivia to me, that he had forgot hers.... so she was going to adopt. I explained about all the babies and kids that needed mommies out there and how even some moms that have a pocket can't always grow a baby. Sometimes things don't work...
I realised then I also need to talk to the mom.
Each step I took towards the neighbour’s house, I felt a little more anxiety creep in. My neighbours are very conservative, and although we are good friends, we come from different cultural backgrounds. After I knocked on the door, she led me into the little kitchen where we sat. You could tell she was as worried as I was when I told her we needed to talk.
"Well," I said, "You'll never believe what just came up." She looked and waited, but as she is a bit of a worrying person, she immediately looked tense. "The girls just had an interesting conversation about babies."
I tried to break the ice with humour, a fall back I'm guilty of using in serious situations.
"Oh," she said. I could tell she was really worried now.
"They were talking about how babies grow in mommy's tummies, and Olivia told her that she didn't have a pocket, so she couldn't do that. Ella told her it was impossible, that all mommies had babies."
I went on. "But- you remember, I told you Olivia can't. Olivia was really upset and worried I had not told her the truth. So I had to sit down and explain it."
"Oh. What did you say?" she asked. "Well, I told her some mommies adopt and some mommies have babies in their tummies. And that Olivia was telling the truth when she said she didn't have a pocket to carry babies in." I paused here, because I wasn't sure what the mom would think.
Then I added "I just didn't want her sitting up in bed at night saying 'Guess what, daddy! Did you know babies are in mommies pockets and Olivia doesn't have a pocket??' That would be a little out of the blue. You and your husband would wonder what in the world the neighbours had been telling your child." She finally laughed. "I guess I never thought about telling her that some people adopt." She said. "I'm so sorry." I went on to tell her not to be sorry, that six was kind of young. Olivia only knew because I had made a point to tell her. All in all it was well received. We laughed some more. She asked more questions about Olivia and I answered them matter-of-factly. The mood lightened. As the girls ran in, Ella ran to her mother and whispered about adoption in her mother's ear. Her mom acknowledged it. That was enough to "seal the deal" in Ella's eyes. We decided to all hop in a car and go to the library. It was so sweet. As I was driving Ella asked question after question about adopting babies and children. Her mother answered every one. I couldn't have expected anything to go any better.
As I am thinking about this now, I am comfortable that I did not say too much to Ida and her mom, but I was surprised it came up. Then, on the other hand, I wasn't.
I want Olivia to be comfortable, and even proud, of whom she is. Olivia feels better now. I hope her seeing me tell her friend and explaining to the friend's mom shows her that not having a pocket is not impossible, and that for her it is just different and okay... and that she is loved.
I want her to be so sure that this is how her body is that she can defend what she knows.
Most of all I hope she trusts me.
It never fails that life hits me when I'm looking the other direction...
Dear Lady Lump Diary,
The first word Olivia learned to write as a beginning kindergartner was love. Just when I would think I was at my wits end trying to get her to behave she would scrawl out those for letters with lots of hearts and X's and O's and pass me a paper note in our van. She is very proud she knows how to write that word. Recently we drove as a family to Chicago to receive treatments for my son's immune system issues. It was a long drive. We made it, and the kids did surprisingly well. We spent time at Lake Michigan where the kids saw their first "beach", and even had an hour or two to spend at the Lincoln Park Zoo. It was nice to turn a not-so-fun thing into a mini family vacation.
On our way back, Olivia sent me at last ten notes with the word LOVE written on them, grinning from ear to ear. At one point I noticed she was taking her pen she had bought from the book fair and was about to mark on the back of our van seat. I immediately told her not to "EVEN THINK about it". She got my drift. Assuming I would have many ink marks to clean up in the back, I was fairly surprised everything looked pretty clear of ink by the time we stopped for the evening in St. Louis. She had been singing, watching movies, or had been quiet the whole way there. I guess that is the point I should have known something was going wrong. It's a mother's sixth sense. When the house is quiet, there is some plan going on somewhere that involves something going awry. I don't know what happened to my sixth sense at the time, except that maybe my x-ray vision was overriding that skill. We checked in to our hotel room with just enough time to clean up to meet friends for dinner. When it came to Olivia's turn to change clothes, she refused. I walked over to her she told me no again, so I began pulling her leggings down to help her change in to her shorts. That is when it hit me like a slap in the face. From the knee down she had covered herself with bright blue ink "flowers". They looked like tattoo knee socks full of scribbles, but were carefully placed so that the pants perfectly covered them. I couldn't believe my eyes. We were supposed to be leaving! I quickly scrubbed her legs while my husband and I talked to her about not writing on her skin with ink anymore. She said she understood, and seemed genuinely embarrassed that people might look at her. By the time we went to dinner, you could still see the faint flower markings beneath her shorts and down, but it was pretty dark, so it wasn't that big of a deal. We had a great time, but in the back of my mind I kept thinking about all the times I did that as a kid.
The next day we began the long journey heading home. During one of our frequent rest stops, Olivia had not quite made it. It's hard for a five-year-old to wait two more miles to the next exit. I handed her a change of clothes. After pulling around a corner where no one could see, she lifts her shirt in the back of the van to change. At the same time, I happened to glance in the rear-view mirror and... gasped. "Oh.... My.... dear Lord!" I blurted as I put my face in my hands. My husband, Andy, immediately looked back. Between the both of us, the van started silently shaking, we were laughing so hard. The kids just wanted to know what was going on. We couldn't even say. Olivia, without our noticing, had managed to outline each of her nipples several times in the vibrant blue ink. I was so caught off guard by the highlighted circles I couldn't help myself. Andy just moaned in hysterical laughter, telling me over and over he couldn't look. Olivia grinned and giggled. "Are you laughing at these?!?" she said, pointing at both at the same time. We both laughed so hard we cried. Andy had to step out of the van.
Olivia, despite her artistic streak, is beginning to understand a lot more than I would have ever thought to give her credit for. She knows what real love is. She knows how to show love, how to give love, and how to laugh when things don't go quite as planned. She knows someday that she will need to adopt if she wants kids. She loves to talk about this with everyone. So far she plans to adopt ten children, nine girls and one boy, each from a different country. As you know there are "ONLY ten countries" in the world. She celebrates the differences that everyone has, and we discuss how everyone is unique. Apparently, she placed a high value on having unique nipples at the time. She believes God made everyone special. She'll tell you that too. Dad is allergic to blue dye and can't touch blue cloth, or shades made with blue, without breaking out, mom no longer has a "pocket" to carry babies in and has x-ray vision to tell whether or not she is wearing underwear, brother has bad reactions to colds like strep, and her best friend next door has brown skin when she has white. These are all ways each of us are special. Everyone has something that makes them special because the world would be really boring if everyone were the same. So it's okay. It's okay to have blue ringed nipples if you're five and you just bought your first flower topped ink pen at the book fair. It just means you're special. Now, if only I could learn how to keep a straight face...
Dear Lady Lump Diary,
Things I’ve recently learned from my three year old daughter:
Sleep talking can provide clues for birthday presents:
(Walking past her room in the middle of the night…) “My mommy’s going to dress me just like a princess…”
French Braids are the key:
“Mama. Braid my hair so then I can be a princess.” (I want someone to French braid my hair so I can be a princess too!)
Five more minutes:
“But this five minutes is going to last a long time, this time. Okay?”
Parting of the Red Sea:
“A man led people all over the “earf”. When they came to the water, they could not go in because they did not have their swimsuits on. So, he had to split up the water.”
“I like the REAL Santa Claus. Not all the pretend ones. I’m going to call Mrs. Claus. She’s my favorite.”
“Santa’s cheeks smell like roses and his nose tastes like a cherry.”
“When he comes to my house, I’m going to ask him one question…if, if… I fink… I fink I want to ask him if I can pet Rudolph.”
“Rudolph can have a sleep over. Wouldn’t that be fun?”
Deer eating grass by the park:
“It’s Santa’s reindeer! They’re checking to see if I was good! Mama… Mama!... Was I good?”
“Some of the elves are Santa’s husins.” (cousins)
Directions to our house:
We just discovered an “Elf on the Shelf” appeared in our house for us to adopt. “It’s just like the movie!” She runs to the elf…“This is how you get back to my house tonight. (while directing with her finger in the air) Joomp! Joomp! Joomp! Joomp! And then you are there!”
While all of us are laying on the bed… “Mommy. We are just like a family!”
Nothing is ever sweet enough.
Yesterday is the same as last week, tomorrow, and a long time ago. If it snows, it is Christmas day. The morning is Sunny day, and tomorrow we’ll all be four.
Love and Babies:
“Mama,”… “Mama, do I have a baby in my tummy?” I said, “No, baby. You have to be a big person first. And remember? Not everyone has babies in their tummies. Some mommies have babies, and some mommies adopt. God made you special, so you can adopt.” “But Mommy!” she said. “I really want a baby in my tummy”, she ecstatically exclaimed as she looked at her belly. I sighed. “Oh, I know, baby… but you are so extra special. You are going to be able to pick out the prettiest baby ever. And I’ll even be there with you if you want me too.” “Okay.” She sighed. “But I want to ‘dopt two…a boy and a girl.” “I see,” I said. “That sounds like an awful lot of work.” “Uh huh…. And the girl’s name is going to be Sadie and the boy’s name is going to be… um… um… Caleb.” Later that week I talked to the Pre-school director. I was really curious to see if she made up the names Sadie and Caleb, or if they were really just kids at the school. Come to find out, there were two babies named Sadie and Caleb. It was then I learned the love of a three year old is colorblind, pure, and something I wish I had more of. These two sweet babies were not the versions I might have linked with Olivia through genetics, but they were exactly what love ought to be. In a way, I think she will be a better person than I am. She will have to work harder to build the family she wants or needs, but I think that will make her cherish it all the more… And cherishing what you do have is what love is all about.
Dear Lady Lump Diary,
Every day in pre-school the three-year-old class has to take a twenty minute session to sing songs because my daughter will serenade them through the day if they don't have a specific time set aside for music. Olivia sings to everyone. It's not uncommon for her to be in a center and for me to walk in the class to find her singing "Twinkle, Twinkle Little Star" as loud as she can into the reluctant boy's ear next to her. (I can't say it is always welcome.) She sings in the morning, she sings to the cat, she sings while eating her food. If you're not listening, it gets louder.
Louder and louder she sang last night as we tried to watch a favourite TV show. We had failed again to get her to bed and now it was 10:30pm. Both my husband I were absolutely exhausted. Meanwhile, Olivia was in her usually position on top of the ottoman in the middle of the living room with her purple, plastic, light-up microphone, singing "Jesus Loves Me" at the top of her lungs. The only variation tonight was that she was stark naked. At one point I gave up and decided to watch as volume was becoming less than pleasurable. The dancing and singing proceeded. I'm not sure what Jesus would think about this performance. It started out "Jesus loves me, this I know..." which quickly led into "And I'm NAKED, oh so NAKED!"
As a three year old, she's pretty comfortable in her own skin, and modesty is not in our vocabulary yet. Her scars from removing and relocating her gonads are almost invisible now, and she's got a knack for moving her little hips. "Mama" she declared animatedly out of the blue, "the rule is, never let anyone touch your POKIES!" "What are pokies?" I asked. She instantly pointed to two various "pokey" body parts that we had not labelled yet, finally adding her lady lump. "Oh," I said. It was taking all of my effort to try to keep a straight, serious face. This was the first time she's ever even made any kind of reference to it. I didn't dare make eye contact with her father. "That's right. Never let anyone touch your... pokies". "Mama" she said, whispering incredibly loud and staring solemnly. "I need underwear!" "...And I'm NAKED,.... oh so NAKED.... JESUS LOVES ME.......I'm NAKED!!!"
I went to bed that night with two important things to remember. Comfort in nakedness is not something I want my daughter to loose anytime soon. After all, Jesus loves us, even our pokies. So to all, remember to spend time and have a good, naked, pokey-lovin night!
Dear Lady Lump Diary,
Yesterday was a very stressful day.
I woke up late. It was about the time I usually had my daughter to her babysitter and when Josh and I were supposed to be walking into Preschool. With two kids, I'm telling ya, we have mornings down to an exact science. My son has been having a lot of problems with his new preschool, but that is another story. I finally get everyone in the van, though very cranky, and we finally got everyone where they were supposed to go. I miraculously only ended up being ten minutes late at work.
After my class had started I got a call from my hysterical baby sitter telling me that she "didn't want to alarm me, but there was a lump sticking out of my daughter's abdomen right under her surgery scar". It was "AS BIG AS A BOUNCY BALL... and IS STICKING OUT... and SHE FLINCHES WHEN I TOUCH IT...." I reminded her (She is a close friend of the family) that we had her gonad relocated under the skin about a year ago, and that she knew all about this. She continued to freak about the lump and told me I should call the doctor right away.
I told her I would come check it at lunch. After all, she could have bumped it somewhere and it could be a little inflamed. My mind raced a bit to cysts or infection, but then I realized she was fine this morning. I then got a call from her about an hour later in my next class letting me know that she was taking Olivia to get a cheeseburger because Olivia, who is 2 1/2 says it will make her tummy feel better. I told the baby sitter to bring her by the school and I would pop out for a minute to check her out. She exclaimed she had checked the other side of the abdomen but nothing was wrong on that side. I reminded her that the one on the right had been removed, but I could tell she was still really worried. Twenty minutes later I run outside to check on Olivia. Olivia is smiling from ear to ear and jumping up and down to see me. Her abdomen was completely normal and she didn't flinch when I touched her little lump.
Our poor baby sitter knew all about her surgery, knew all about the gonad, but had never noticed it stuck out a bit. I told her "hey... don't worry... That's just her...you know... lady lump." She just couldn't get over that it was the size of a bouncy ball....and ROUND. I was biting my cheek trying not to smile, but she was so serious and determined. I had to explain that if you go poking on someone else's "bouncy ball" they would probably flinch too. Olivia is just so skinny it sticks out. My husband and I chuckled about that all night. She was freaking out over something that has been there for a year. She's changed our daughter's diaper millions of times, and Olivia totally played her. I figure the best advice I can give....or the moral of the story.... is that next time your daughter needs a cheeseburger, take a page out of Olivia's book..... and blame your lady lump, but please... don't go poke'n some poor kid's bouncy ball. That's private.