The Lucky Pumpkin

Guess who knows three signs now? Emmy! We are so proud of her! This week we have seen amazing growth in her skills. Last week she knew the sign for “more.” She has known it for quite a while, and sometimes she even tries to say “more” while doing the sign, but it usually sounds like “mo.” Earlier this week we got some Discovery Toys delivered from a home party that I went to. I ordered the “tangiball” that smells like vanilla and has little bumps all over it. Emily loves this ball and we were trying to get her to do the sign for ball while playing with it, and she did! Now whenever we take this ball out, she does the sign for “ball.”

Today at lunch I was trying to get Emily to drink from a sippy cup. She does get milk out of the cup, but it is a very messy process where most of the milk dribbles out of the sides of her mouth. I asked her if she wanted more milk, and she put her hands up in front of her face and looked at them and very clearly did the sign for milk! It looks very different from “more,” which brings both hands together, so I know she was signing “milk.” I immediately gave her some milk, and she was so happy.

We had a big celebration here, but I did feel a little bit guilty about Anna who was looking a little bit sad. I told her we celebrated like this when she first started to talk, but she doesn’t remember because she was too little. I know it is hard for her when her sister gets so much attention. She is so smart that I know she wonders why she doesn’t get the same celebrations for the little things. When she was ten months old, we could put colored toys in front of her and ask her to point to the red one, or the blue one, or any color, and she would get it right every time. She used two word sentences at ten months, too. She would say, “Dada go,” or “Bye-bye Dada!” She started calling Bob “Bob,” at this time, too. One day when he was going to work, she said, “Bye-bye, Dada, bye-bye Dada,” and as soon as he shut the door, she said, “Bye Bob!” because she knew he didn’t want her to call him Bob! (She has an excellent sense of humor!) The thing is, no one remembers when they are ten months old, so she doesn’t remember the celebrations that we had for her. I suppose it is always hard for the older child in this way.

I remember when we just found out about Emily’s Down syndrome diagnosis. The social worker said to us that as far as genetic conditions to have, Down syndrome is one of the better ones. She said that there is a huge amount of research and information available about medical, educational, and social issues, and that because all of this information is documented, there usually is no need to fight with the insurance companies. I have had a couple of discussions these past few weeks where this fact really hit home with me.

First, I was telling the family support committee members about my kidney stone (see previous post,) and I concluded with the fact that neither Bob, his parents, nor I had gotten any sleep that night. The mother of a young boy with autism mentioned that she rarely gets a night with uninterrupted sleep. I immediately felt like I was ungrateful for the blessings that I have. My girls are such good sleepers that I rarely get awakened in the middle of the night. I can’t imagine living your whole life sleep-deprived. I mean, when your kids are infants, you get through that no-sleep phase by constantly telling yourself that it is only temporary, that there is a light at the end of the tunnel. Well, what if it wasn’t only temporary? I really don’t know what I would do. I do know that I would not be as good of a mother. I need sleep to function properly.

The other conversation was with another member of this committee during a social event. Her daughter has had seizures since the first week she was born. She still has them many times a month, at any time of the day. She is three years old now. Because of her condition, the parents have to take turns sleeping with her in her room. They have a weighted blanket, but that doesn’t work as well as the parents pressing into her. This pressure helps keep the seizures at bay to an extent. (Also, they need to be there while she is having the seizure to keep her safe.) Talking to this mother also made me feel so lucky to have the girls that I have. But, even more of a realization came tonight when I returned a call that she had made earlier in the evening. I called after Anna was in bed, about 8:15. Just as I was dialing, I realized that she might be in bed already! She wasn’t in bed yet, but was almost ready. I thought about how much I value my evening time. It is the few hours that I can do my own thing. (After the dishes, laundry, etc, is done!) It is also the only time Bob and I can talk. Imagine if you never had that time together with your spouse because one of you has to be in bed with your child!

I believe that we all have our crosses to bear, and that each one of us has some hardships that others may or may not see. Some of us, though, have taken on so much that they deserve an extra special place in heaven. I know that these two mothers I wrote about deserve that blessing. They serve as an inspiration to me to be the best mother I can.

I spent a night in the Emergency Room this week with a kidney stone. I thought that it was my appendix, so after about four hours of increasingly intense pain, I dropped the Midwestern stoicism and finally went in. The whole experience was awful. First of all, I had felt dull pain all week, but I attributed it to my menstrual cycle, so I just ignored it. Then on the day of the ER trip I felt like I had to urinate all day long, even directly after going. It was quite uncomfortable, and really distracted me from giving my full attention to the girls. So of course, I went on-line and “diagnosed” myself with a urinary tract infection. (Note to self, that could have been incredibly dangerous, don’t self-diagnose again!) Later that evening, the true pain kicked in, and I started to get scared. I didn’t want to wake Bob because he had to leave for work by 5:00 a.m. the next morning for the early shift, and he really needs to be well-rested to do his job. After a couple of hours, I had to wake him. The pain was so bad, I was throwing up. I said I’d drive myself to the hospital, (it is only less than a mile from our house.) Bob said no way, so he brought me, but had to drop me off because the girls were in bed! So I go in and I feel like I am acting out Brian Regan’s comic skit for the ER. (Hilarious! Check it out if you haven’t seen it.)

http://www.youtube.com/watch?v=k9m2FLHlEwA
http://www.youtube.com/watch?v=UM-HWkbnDfg

Anyway, to make a long story short, (I know, too late,) I got some meds and a CT and passed myself a kidney stone!

Bob was freaking out because he had to leave for work soon, and we knew if it was my appendix, I’d be in surgery. So he called the hospital, but they wouldn’t tell him anything because of confidentiality laws, so he called his parents to come from Rochester! Yes, in the middle of the night! We have only been here since about September, and we do have some friends through the Down syndrome support groups, and several of our neighbors, but you don’t call people in the middle of the night like that. It is like the movie Uncle Buck with John Candy. (One of our all-time favorite movies.) The neighbor Marcy comes in and asks Buck why Cindy didn’t call her to watch the kids. When she found out Cindy’s dad had a heart attack she says, “Oh, that explains it, you need a relative for an imposition of this size.” So, I got back from the hospital about 15 minutes before Bob’s parents arrived. Bob had to leave for work about a half an hour later, so none of us got any sleep that night!

I have been thinking about how angry I have been at my parents lately. I hope that I haven’t been saying that I am “pissed-off” at them. I try not to use language like that because I really do think that we can create our reality with our thoughts and our words. I honestly don’t think that I have said that, but I guess that I HAVE been thinking it. I do believe that it is possible to think something so strongly that it manifests in your life. And I have had some pretty strong emotions about the whole situation. It looks like I have more work to do if I want to rid this emotional baggage from my life and stay healthy!

Other words/phrases I try to avoid are “ticked-off,” (heart,) pain-in-the-neck, (or anywhere else,) “I can’t stand it,” “I can’t stomach it,” and “hate.” (I don’t want to focus on the feeling of hatred, because I want that feeling out of my life.)

An interesting aside related to this is what happened to Bob today. He got an angry fax from a patient because of a typo from the transcription of his notes. (Nothing serious that would change anything, literally, just a typo. This patient has a very long history of doing this to all the doctors she sees, and clearly is a little bit paranoid.) But the kicker is that if you heard the things she said in this fax, you would say to yourself, “What an assh#$%!” And guess what, she has cancer of the rectum! Like I said, thoughts are things!

Guess who’s starting to creep on her own? Emily! This is BIG STUFF around here! She is almost 13 months old now, and we have been working on moving for a long time. Her other recent accomplishment is to do the “sit and spin” perfectly. (She sits and uses her feet to move herself around in a circle.)

Emily has her ISFP (like an IEP, or Individualized Education Plan, but for the whole family,) meeting this week. I hope that she will creep for the teachers at the meeting. She has a tendency to do things for us, but not for the teachers. I feel like they must think that half of what I report that she can do is just wishful thinking on my part.

On an unrelated note, I saw The Memory Keeper’s Daughter this weekend on the Lifetime channel. It is a story that features a girl with Down syndrome. It was really nice to see the actresses with Down syndrome do such a great job. I really enjoyed watching it, even though fiction of that genre isn’t something I’d normally watch. Three big-time movie stars were in the movie, Gretchen Mol, Emily Watson, (Angela’s Ashes,) and Dermot Mulroney. I would like to send a huge cheer to Lifetime for making a movie like this! It is wonderful for getting the word out that people with Down syndrome really are More Alike Than Different, which is the slogan adopted by the Down Syndrome National Congress.

My Mother-in-law has always been a me monster. I figured this out the first time I ever met her 21 years ago. It totally bothers my sisters-in-law. They can’t stand to be with her for more than an afternoon. Somehow, I have always been able to overlook it. It has always rather amused me in the past. Probably mostly because her intentions were never mean-spirited. She is usually a very generous person who happens to like to talk about herself and her activities.

Today, however, she crossed the line. Bob’s sister came to me at Easter and confided to me that she is uneasy about her Father-in-law. She thinks something might be going on with her two small daughters. The oldest one just graduated from using a crib to a “big girl bed,” and when she stays at the in-law’s house, they sleep in bed with her! (Also with the baby.) Hello! HUGE RED FLAG!!!!! These are not the parents, but the grandparents. There have been other things, too, such as when the oldest one was younger, the father-in-law babysat her alone, and Bob’s sister came home to find her daughter stripped naked and he was taking pictures of her. ANOTHER HUGE RED FLAG!!!! This daughter doesn’t want to be alone with the Father-in-law anymore, and he also was caught “pretending” to punch her in the head. MORE RED FLAGS!!!! There were other things, too, but these are the biggest ones.

I told my sister-in-law that I was concerned, too, and that she needs to NEVER leave the girls alone with the in-laws. She said she would only for 10 minutes or less, and I said that it takes less time than that for a pedophile to victimize someone, especially someone that he knows so well.

I told Bob about the conversation, and he was furious that his sister’s father-in-law was acting this way. He is very concerned for our nieces. So, he decided to tell his parents to be on the alert, too, and if his sister seems like she needs to talk, to be ready to help her. They turned a deaf ear to the whole thing. Bob’s mom literally turned up the t.v. and changed the conversation back to herself!!!!!! Unbelievable!

I am very sensitive about this issue because I was a victim of incest. I know how hard it can be for the victim. The guilt, the shame, the way it tears a family apart is a horrible thing. Because this happened to me, though, I do think that I am more in tune with picking up on the cues when something isn’t right in a situation.

I do think that we are right that something is going on, but I pray that we are wrong.

The cat came back, the very next day. The cat came back, we thought he was a goner,  But the cat came back, he just wouldn’t stay away! (American Folk Song)

Well, Reese came back! I guess after spending the day out in a snowstorm he realized that he could be inside sleeping on our bed and getting plenty of food and water. We saw him eating the food we left out, so we opened the door and he bolted under the porch steps. Then we brought out our secret weapon, Anna. She sat down on the steps with me and we started talking to Reese. He heard us and came out right away. She petted him and he followed her into the house! Reese is a sucker for the girls. They adore him and he adores them. I’m glad he came back even though we were getting pretty excited that we could get some carpets with him gone. (He has a problem with taking a bowel movement on carpets, so we give him his own carpet square in the basement by the litter box to go on. But if we have other carpets in the house, he sometimes will use them, too.)

Anna was so cute about Reese being gone. She said that she talked to God, “Through my head,” and asked Her to “Pick up Reese and put him back into our house.” I know that some people would have a problem with that statement, but I think it’s great! She told me before that God is a She, not a He. I explained that God has both a female and a male side. That to say God is just male or just female is to put a parameter on something that is, by definition, omniscient. (I didn’t use those words, but you get the idea.) I just hope that no one tries to squash her innate knowledge of God out of her by telling her that God is only male. Of course God has a feminine side! This is where we dropped the ball so long ago with organized religion. This is why catholics tend to worship Mary. It is from our inner knowing that there is also a female side to God.

Years ago, I took a theology class in High School that was offered for college credit by St. Mary’s University of Winona. It was taught by a priest who tried to make sure that girls couldn’t take the class by saying that the curriculum was the same as it would be for a first year student to become a priest. Our parents fought this to the school board, and he had to allow girls in the class. I am so glad that I took that class because I learned so much about what the catholic church truly teaches compared to what they want you to think is necessary to be a part of the faith. (You know, all of the misconceptions that are put out there by those trying to undo Vatican II. The church Bullies who call anyone who thinks for themselves and makes their own decisions a “cafeteria catholic.”) If you are interested in learning the truth, read Catholicism by Richard McBrien. Anyway, this priest told us that God is not entirely male. (I actually couldn’t believe my ears that a person who was so anti-woman would admit this.) He said that many theological scholars admit this, but that it is tradition to refer to God as Father, and it is just easier than devising a S/HE type of word, etc. There you go, straight from the horse’s mouth! By the way, this same class first introduced me to the writings of the rat, or then Cardinal Ratzinger. (Pope Benedict XVI today.) Very unforgiving, very harsh in tone, and in my opinion, very un-Jesus-like. I seriously wept when he was named pope because I feel that it is a huge step backward in moving the church to the direction of the true message of Jesus. (The Golden Rule.)

Our tuxedo cat, Reese, is on vacation again.  That is what we call it when he gets out of the house.  He took off last August for two weeks right before we moved.  Anna was very upset.  We finally found him living under our neighbor’s steps.  It took about a week to convince him to come with us.  Now he is at it again.  The door sometimes blows open if you don’t latch the deadbolt.  This happened the other day, and we discovered it too late.  Bob saw Reese by the neighbor’s garage.  He took one look at Bob and ran away.  I am surprised that he would do this because he really has it made here.  He has lots of love and plenty food and water.  He is so good to the girls, too.  He lets them both rough-house with him, and he never complains or swats at them.  I saw him sitting on our porch two days ago, and he then went under it.  But, when I got there from the upstairs, he wasn’t there.  That was right before we got about six inches of snow.  We leave him food, but sometimes it hasn’t been eaten, and other times I am not sure it is him eating it.  We have several neighborhood strays that would love to eat, so we really don’t know who is getting it for sure.

It is really hard because our pets are a part of our family.  He also only has two teeth.  He had to have the rest removed last year because of poor dental hygiene.   Well, I hope that Reese makes it all right on his own.  I hope it is really a vacation and he is not gone for good.