It never gets easier

Lil Bug has many medical consequences to having Spina Bifida. A few I have mentioned in previous posts, and many I have not even touched here yet.

Most of the time I am ok. I am happy. I am grateful. I realize things can always be worse. But once in a while I am not ok. I am sad. I am emotionally drained. I am frustrated. And, I feel like the weight of the world (or at least my daughter) is on my shoulders.

I am best described for the last half of the previous paragraph right now.

Lil Bug has been plagued with UTI's since her birth. The first 3 or 4 infections she was hospitalized for because she had a bug so bad that only IV antibiotics could eliminate it. As she has aged, the infections that she gets have been more common and oral antibiotics are successful. When I say plagued, I mean PLAGUED. She gets them just about every other month and sometimes even sooner. It isn't because she isn't clean. I do a great job keeping her clean and if I thought changing her diaper every 30 minutes would fix the problem, you can bet that I would do it. But, that is not the problem. The problem is her bladder and bowel control issues. Actually, I should say lack of control issues.

Her spine opening was in the L5-S2 range. That is low on the back. As a result she has no feeling in her feet and less sensation in parts of her legs. Most children (adults) with Spina Bifida have bladder/bowel issues because the nerves at the lowest part of the spine are the ones that actually control those functions. Even if you had an opening at the very stem of your spinal cord, there is a good chance you would have some amount of bladder/bowel issues. It sucks!

The problem with her bladder is that the sphincter at the bottom/end is generally "stuck" in the closed position, so she doesn't urinate on her own. Sometimes she leaks, but she doesn't go pee like you and I. As a result, the urine sits in her bladder and bacteria grows and she gets a UTI. Even if she could voluntarily open the sphincter, she may still get UTI's because she doesn't have the muscle control to be able to squeeze the pee out and so some amount of urine is always in her bladder because she can't empty it on her own. Urine is DIRTY. It should not stay in the bladder. So, our solution? We have to catheterize her 4x a day and limit her liquid intake.

Think about that! Can you imagine being catheterized even once, let alone daily and 4 times daily at that! It is a sad truth for Lil Bugs life. She doesn't complain about it usually. Since her sensation is lowered in that area, it doesn't hurt her. Her biggest complaint is that it takes time to do it and she has to stop playing to have it done.

Even though we do this process daily, she still gets UTI's and it is so frustrating. For one, it is a huge reminder (however small) that Lil Bug isn't the typical 3 year old...she has other issues that need to be addressed. For another, she is in pain. She complains that her belly and "bottom" hurt. She doesn't understand why she has to suffer. She doesn't like the medicine that she must take to make her healthy again. It is frustrating to know that these UTI's could turn into kidney infections and that would open up a whole new battle that fortunately we haven't had to deal with.

This past Friday she started complaining that her "bottom" hurt. I also noticed that her urine was smelling strong. As I catheterized her, I noticed sediment in her urine. I have the necessities to flush her bladder out, which I do when I think a UTI might be coming on. I flushed her Friday, Saturday and Sunday. If flushing is going to work, it usually works within the first day or two. By Sunday night she was in so much pain and complaining that I took her to the Urgent Care Center at about 7:30. We returned home around 10:30pm after picking up her new prescription. She took it, went to bed and slept well. Yesterday she woke up and we got her all ready for school. We were literally walking out the door to go to school and she started complaining it hurt. I decided she wouldn't go to school and she was devastated. This is the first UTI that she has complained about hurting. She is always whiny. She is always clingy. She is always tired. But, she never tells us it hurts. This time she did.

I don't want Spina Bifida (and its side effects) to control Lil Bugs life. I don't want her normal day-to-day activity to take a backseat to this craziness. I am slowly learning that no matter how "normal" she appears, she isn't. That is a hard fact for a mom to swallow. Yes, she will still have a great life. Yes, she will be able to do most things just as anyone else her age can do. Yes, that is true, but she will not have the "normal" life. Normal doesn't consist of chronic UTI's. Normal doesn't consist of walking with crutches. Normal doesn't consist of frequent brain scans. Normal isn't the first word I would use to describe Lil Bug. I know that many families face many difficult things in life, and I am not saying ours "things" are easier or harder than theirs. I am just saying that right now, this is hard for me.

Sorry for the downer post. I am just feeling down right now. I think I will be writing more posts surround some of this again soon. There is so much on my mind right now and this is the safest place to let it out.

Pathetic attempt

Many of my blogland friends have used a blog reader rating system to see what their blog reading level is. As a college instructor, one would expect that at minimum my blog would be rated at a college graduate reading level, but after using this rating system, I have learned that my blog rates at the lowely Junior High reading level. So, in my attempt to impress even more people (because I am out to win friends and influence people with my blog) I have decided to hyperinflate my score in an effort to make myself feel more blogland worthy. :P

So, here are some wonderful big word paragraphs...let's see if that helps my score?!?! (These are "borrowed" from a website I found when searching for "BIG WORDS")

**EDITED TO ADD** This great post only raised my blog reading level to high school...hmmm, guess I will have to try harder. :)

Big Words are colossal superfluous colloquies.

BIG WORDS
Big Words were indubitably proliferated per Sir Thomasical Gergantiunation II, in a display of incomparable hyper punctiliousness. Unequivocally there was unambiguous astronomical day when Gergantiunation excogitated the conglomerate erudition of paraphernalia. Notwithstanding e was insensate Gergantiunation conceived in envisaging deductive that diacritic conceivably permitted sonorousness perspicacious by commissioning morphemes that bagatelle posterior kumtux. A dexterous consummatent and stupid were consanguineous! oh and supercalafragalisticexpialadoucious. '''Cat is a huge word. but i think it makes me think too much!!!!!!'''

hoffmanical


the most largest word in all of the ant hill are "a, I, lol, ttyl, rotflmmfaso, c-ya, gtg, peace out, homie"

BY: John p. Ellis of northern, west verginia in georgia(the country not the state you silly goose)

Breviloquent
Big Words can be a fishcake when with impertinent sausages of south amazonia and get this you modulate inspicuous strudel. But memorialize, it takes many nauticals to preponderant the pictorialization of Big Words. In denouement, if you cannot envisage this exposition then you sir, are an ignoramus vexed by Pneumonoultramicroscopicsilicovolcanoconiosis.

Utilization in Métier Superintendence
Big Words assist the facilitation of efficacious communication by leveraging multilingual platforms, ergo subsequently resulting in an influx of expeditious enterprise which defracts the subvectoring of effective eCommerce capitalization techniques.

Word!

Your 3 words

Every few weeks Good Morning America weekend edition has a special "Your 3 words" video series that I really enjoy.

I can't really put into words what the premise is, but here is a link to one of their completed projects from a few weeks ago. What do you think?



I would love to do something like this on my blog, but haven't come up with how I would want it to look or function.

Until then, enjoy...

A different perspective (long and personal)

I am sure most of you know that I was not raised my by biological father. In fact, when I was 2 or 3 years old, he signed off his rights to me. When I was 5 my dad adopted me and that is the only dad I ever knew growing up. In the back of my mind I remembered this guy named "J" but I never asked about him. I loved my daddy so much I never wanted to hurt his feelings by asking about J. I would get courageous once in a while and ask my mom, but it was always awkward. I felt like I was bringing up a terrible part of her life and so I generally just daydreamed about J, but never spoke of him.

When I was 16, my parents divorced. It was at that time that I felt a bit more comfortable talking about J to my mom. I knew it was hard for her, but I also had a number of questions. My only memories of me with J were negative. My mom confirmed my memories. Often times, when I would have visits with him he would have a different girl staying at his house each time. He would party (serious, hard-core, illegal stuff) while I was in his presence. The last time I saw him I clearly remember my mom coming to his house to pick me up. I don't know if he already signed away his rights or was planning to soon or whatever, but regardless, he knew he wasn't going to be seeing me anymore. I had packed up my few toys that were at his house to take to my moms house. My mom came to the door and they argued about something (probably me) and then he told me that I was not allowed to take my toys. He said those toys belonged to his daughter, which apparently wasn't me anymore, so he was keeping them. I was devastated!

I am a firm believer that a girl needs a daddy. Ok, I am sure some people won't agree with me, but I NEEDED my daddy. When my dad came into the picture I clung to him. I was longing for that father figure like crazy. Even though I had a very capable dad raising me (although he was by far NOT perfect), I was missing something. I felt so rejected and I couldn't figure out why J didn't love me enough to keep me in his life. I couldn't understand what I did so wrong that J was willing to walk away from me. It hurt. It still hurts. I am 31 and I can honestly say that I still have a lot of pain surrounding the whole issue.

When I was 18 I asked my mom to help me find him. She contacted him first and set it up. I was so relieved to meet him. I couldn't wait to see what he looked like. How he now acted. To learn about his new family. The first year or so was great. My dad, to this day, has no idea that I had contacted J. I still don't want to offend or hurt my dad. It is ridiculous, I know, but my excuse is that his health is very shaky at best and I don't want to upset him knowing that any day could be his last (or he may live another 5-10 years, who knows?).

When I met J, the first year was nice. He had 2 children with his wife (one of the girlfriends at the house when I was younger). They were cute and I enjoyed getting to know my brother and sister. They were very young. The boy was only 2 and the girl, only 4 when we met. They were so excited to meet me, their sister. I was happy to know that J had told them about me and they were excited to meet me.

A couple of years after we met, The Designer and I moved to Colorado and so we only saw them once a year, usually at Christmas time, when we came back to Michigan for vacation. The problem was that I never heard from J. I ALWAYS had to call him. I ALWAYS had to set things up. It was frustrating and I kind of felt rejected all over again.

When I learned I was pregnant with Lil Bug and learned about all of her medical needs, I reacted in a lot of different ways. One of the things I did was cut off my ties with J and his family. I told him that I didn't think I had the energy to maintain a relationship with him that he didn't seem to value or want anyway. I chickened out and did it through email. I didn't even tell him I was pregnant. I just ended it. I told them that we were planning to move back to Michigan in a few months and after we got there, I would let them know how the kids could contact me, if they wanted to. I never heard from them again.

After Lil Bug was born, I felt compelled to tell them about her and to alert them that when the children planned to have children, they should take extra precautions to prevent their children from having Spina Bifida as well. I received a short, rude email back and that was it.

Ok, so that is the background for what this post is really about...

Adopting Lil Princess has really gotten me thinking. The Designer and I feel very strongly about keeping Lil Princess in contact with her natural parents. I can understand a tiny bit some of what she might experience as an adoptee and I want to help her have access and answers when she is ready. As I was thinking about this, I realized that I am doing everything in my power to keep Lil Princess in contact with her family, but have not offered Lil Bug the same benefit. I cut off ties to her biological family without her permission. It was like a slap in the face...that is not right.

So, I feel like although I hurt and have a lot of unresolved issues with everything, I need to extend the same opportunity to Lil Bug by attempting to contact J and his family once again.

Last week I wrote this email to them:

Hi A, J, J & J-

I am sure I am the last person you expected to hear from, but I have a few things I wanted to share/ask.

First, I wanted to let you know that we have another daughter. Her name is Lil Princess and she was born on Aug. xx, 2007. She is beautiful and healthy. She came to our family through adoption.

Second, I wanted to see if J (sister) and/or J (brother) were interested in and/or ready to talk to me.

To make it very clear, I hold no ill will towards them. In fact, I hold no ill will towards any of you. Three years ago when I chose to cut ties with J (biofather), that stemmed from MANY things...some of them had to do with him directly and some did not. It was a VERY stressful time for me as I was pregnant with a child that I was told would be severally mentally retarded and physically disabled. You can imagine what that does to a person emotionally. I had no energy left to maintain a relationship that seemed like J (biofather) was not interested in having. I hope that you read this with my truest intent in mind. I am not trying to pick scabs or anything, just thought it was time to let you know that I am not angry.

I miss seeing J (sister) and J (brother). I am sure they are grown and beautiful. I hope they are doing well. I would love for them to meet their two incredibly beautiful nieces.

If you see fit, would you please share with them my desire to see them. I live in Grand Rapids now, so I am not far away and could meet them anywhere.

My phone number is 616-7xx-7xxx.

The Professor

P.S. I have included pics of the girls so you can see them. Lil Bug is getting big and is doing very well. Lil Princess is such a joy.

Just this morning (1.5 weeks later) I received this response:

Hi Professor,
It is really nice to hear from you!! Congratulations on the new baby!! Both of the girls are absolutely adorable. I did look at your family web site every month to see the pictures and hear about your lives.

J (sister) graduated from high school this past June and is away at College. She was recruited by Adrian College to play soccer for them. Adrian is located in the South East corner of Michigan and is a liberal arts college, she loves being there on her own and she likes the college. She is planning to get her PHD in phsycology. She graduated in the top ten of her class and earned a number of academic scholarships. I forwarded your e-mail to her. I can't tell you what her feelings are toward you these days because we haven't talked about it, she was really angry at you when you told us you didn't want to be apart of lives anymore, and when I asked her last week if she wanted to contact you she simply said "no".

J (brother) is in 10th grade this year, he will be 16 in March and is looking forward to getting his drivers license. He played his first year of football this year and although he ended up sitting on the sidelines a lot of the time he loved being a part of the team. He has a number of girls that call him all the time, he's turned into quite the little cutie :). He says he would like to get to know you, here is his cell phone number 231-5xx-9xxx and his e-mail address xxxxx@aol.com.

I need to leave for work now.
A (biofather's wife)

So, that is where I am at right now. It does bother me a bit that A wrote the email rather than J, but it is a start, I suppose. I'm sad that J (sister) was hurt by what I did. I know she has no idea what my childhood was like, nor do I feel that she needs to know. I don't want her to think badly of her father, so I will just let her think bad of me instead. However, if she ever asks specifically, I may tell her...not sure right now.

I am glad I followed through with the email. I hope that things will smooth out and that Lil Bug and Lil Princess will get to know their aunt & uncle and maybe even some day another set of grandparents. Who knows?!?!

I am slowly coming to grips with the fact that although my feelings are very real and were hurt, it really isn't about me anymore, but about my children. I think I am close to being able to put the past aside for their sakes.

Time flies

I can hardly believe that Lil Princess turned 3 months on this past Tuesday. How is that possible? Time flies!

She is still waking up once a night to eat, but I am convinced it is out of habit more than necessity. So, Monday night/Tuesday morning at 2am, when she woke up, I decided to let her cry it out. I went into her room, assured her mommy was there, she was ok, etc. and patted her back. She cried on and off for about 20 minutes and then fell sound asleept and didn't wake until 7:30 Tuesday morning.

Night #2 The Designer was supposed to do the same thing if/when she woke up in the middle of the night. At about 2:30, she woke up. He went to her room and tried all the tips I had given him from the night before. After 30 minutes, she was still crying, so I went in, made a couple of adjustments and within 2 minutes she was zonked back out and slept until nearly 8am.

Night #3 was last night and she didn't wake until 4am. I did the same routine and she was back to sleep until about 7:30am.

So, I am hoping she will finally figure out that she doesn't need to wake up in the middle of the night soon. I am hoping that something very positive will come from this. Keep your fingers crossed, okay? Or, better yet, say a prayer for Lil Princess. She seems to have much better days when she sleeps more at night, so it is good from all directions.

Currency valuation

Recently my father gave me a $20 bill that was double printed. He received it the year it was printed and has held onto it since, which was 40+ years ago. At a coin show a few years back, a man offered him about $150 for the bill, but he didn't sell. I am trying to learn how one would go about finding the value of this $20 bill. Does anyone have any ideas? I have kind of researched online, but it was very overwhelming, since I didn't exactly know ANYTHING about collectible money.

If you have any tips, I would appreciate hearing them! :) Thanks.

Brain Farts

When I am going about my day, I can think of a hundred different blog ideas. But, when the time comes for me to sit down and blog, well, I get a great big brain fart and can't remember any of them.

Now, I know that some will comment and say, "write them down as you think of them." Yeah, that makes a lot of sense, but if it was that easy for me to do, I would have done it already. :)

So, until I can recover one of my lost ideas, have a great day.

Not sure what to think...

I am sad, confused and hurt right now. I am trying to wrap my mind around a conversation I had with one of my good friends a little earlier today. I am sitting here baffled and angry and the only thing I can think of to possibly help a little bit is to blog. Let me give you a brief recap.

I have a friend, Susan. (I will call her Susan to protect her ignorance....I mean, identity). She has been very excited for our family as we grew through adoption. I have never heard her say anything anti-adoption or extremely ignorant until today.

She called to see how my day was. I told her that I have had a great day. I went on to tell her that we had Lil Princess dedicated at church this morning and 14 of our family members joined us to support us. Included that 14 were N and her mother. I thought it was great they were there.

Here is a general overview of how the conversation went from there...

Susan: Yeah, the whole idea of you having N around so much freaks me out.

Me: (a bit surprised and confused) Um, why?

Susan: Well, I don't know. It is just weird!

Me: What is weird, I guess I don't understand?

Susan: You invited her to go scrapbooking with you Friday night (she knew this from a previous conversation) and then she was there today. In my opinion, you should only invite family to something like a dedication.

Me: N IS family. She is Lil Princess' mom.

Susan: No! YOU are her mom, N is not her mom any more.

Me: Yes, N is her mom. We are both her mom. I am ok with that idea, why aren't you? Besides, what do you care anyway?

Susan: I care because YOU are her mom and I don't want N to hurt you later on. I don't see how anything good can come from her staying involved this much.

Me: *by this time I am shocked. I have talked about my relationship N with Susan many times and I have never heard her say anything like this before.* Well, I don't think I will hurt from this relationship. I have prayed, read books, prayed, read blogs, prayed, talked to adoptees, prayed, talked to first moms, and did I mention prayed? I think our relationship is healthy for all persons involved.

Susan: I don't know...like I said, this whole thing just weirds me out. She is not Lil Princess' mom, you are and I hate to hear you share that title when you have worked so hard to get it.

Me: I didn't work hard! I did very little, actually. I am not sure we should talk about this anymore right now. I love N. She is my friend. I will continue to have her be a part of our lives because I believe that is the right thing to do for Lil Princess and because I like N. I enjoy seeing her.

Susan: Maybe I should just shut up now.

Me: You don't have to understand, I guess. I shouldn't assume you can ever understand, for that matter. Adoption is complex. It takes time to listen, learn, understand and realize that it isn't just about the adopting parents, but so much more. Since you have never been adopted, nor do you ever plan to adopt, you probably won't take enough interest to fully understand the importance of an open adoption. You just have to understand that I have spent time doing those things and I am not naive about the whole subject.

Susan: So, what are you doing this week?

Ok, so I hung up the phone and felt angry, hurt, confused, and sad all at the same time. I guess I just assumed she understood adoption, but obviously I was wrong. How could she, really? She worries about me, her friend. She doesn't worry about N. She doesn't understand why N feels a connection to Lil Princess even. What?!?!?! How could she NOT feel a connection...seriously?!?! Anyway, I just needed to vent. Ignorance is everywhere and I just learned that it hits closer to home than I realized before today.

So, now I have to shake this icky feeling off and pray for guidance on how to continue this friendship. I really care for this person and I can not hold ignorance against her. I can, however, hold it against her if she refuses to learn from what I am saying or just keep her mouth shut on the subject.

Any thoughts on what I should do/say?

I need some advice (maybe a child psychologist?!?!)

This post is for those of you that have been there, done that, with your child and for those of you that will just plain find it funny (the humor is at the end)!

As you know from previous posts, Lil Bug has a physical disability. She was born with Spina Bifida. As a result, she also has hydrocephalus, which has consequencial brain damage, etc. So, taking all of that in, it might not surprise you that we have spent countless hours, days and weeks at hospitals and doctors offices, surrounded by dr's and nurses.

Now Lil Bug is 3 years old. She is a very intelligent child. She is also very articulate. She has been infatuated with pregnant women for some time now. She has been around a lot of pregnant women for the past 6-8 months. She plays pregnant often and just about anything in our house is fairgame for becoming the "baby" she shoves up her shirt to pretent she is pregnant.

For a very short period of time, she watched A Baby Story on t.v. We stopped it quickly because she started imitating what she saw on the show. That was about 4 or 5 months ago. She still acts it out and she is very detailed in doing so. It is almost embarrasing because I fear she is doing this at school, although the teacher has assured me she hasn't.

So, on to the part that I might need some guidance on. My daughter is totally obsessed with medical/surgery shows on t.v. I mean the bloody, gorey, show-it-all kind where they do open heart surgery or brain surgery. She can be playing and if she passes the tv and something like that is on, she stops dead in her tracks, sits down and stares longingly at the t.v. The Designer and I have talked about this...we are not sure if we should let her watch this or not. I mean, I have heard of some people knowing from childhood what they would be/do for a career as an adult. In fact, The Designer did. He knew when he was kindergarten age that he would be an architect. I don't want to not encourage this, but I don't want her having nightmares about what she is seeing on t.v. either. So, is it ok for a just barely 3 year old to see this.

As a side note, she has never once woken up from a nightmare. She has never seemed disturbed by all of the blood and guts. So, what do I do? I want to do the right thing, but I have no idea what that is. Allow her to watch this educational, yet disgusting t.v. or stop her for fear of what it might do to her head?

On her own accord she regularly tells me she is going to be a doctor when she grows up. I had the mind to ask her what kind of doctor she was going to be the other day and she informed me that she is going to help babies be born. Then she took it a step further and said specifically that she is going to help Dora (yep, you know the one...the explorer!) have babies....um, do I have a future OB/GYN on my hands?

pictoral update

I haven't been around much, but things are well around here. Here are some of my favorite pics from the past week...enjoy.


Lil Princess with her first momma, N


The "fam"...The Designer, The Professor, Lil Bug, N, Lil Princess, N's mom (L) and N's brother (V)


Lil Princess with her grandpa (my dad), D


Little girl, big bed!


All bundled up and nowhere to go. Yep, those are spit bubbles on her lips.


Lil' Pumpkin


Say "cheeeeeese"


Lil Bug popping bubbles


Lil Princess with her first daddy


Pretty girl


Look at that face!


Lil Bug playing in her balls...she shoved some up her shirt and called them 'babies'..oh dear!


Sooooooo big


Mommy and daughter


Lil Bug is not liking the "guts" of this pumpkin much at all


Going in for the "guts"


SUCCESS!!!


Lil Princess watched the whole thing, but never said a peep. She is taking notes though, I'm sure!


Lil Bugs class halloween party...of course I'm biased, but I have a particular obsession with the cute purple carebear.


My darling carebear and pea in a pod


Some sisterly love going on right there.

I've been tagged...TWICE!!!

My friends, Anita & Beth, have tagged me.

Rules: Once tagged, you must link to the person who tagged you. Then post the rules before your list, and list 8 random things about yourself. At the end of the post, you must tag and link to 8 other people, visit their sites, and leave a comment letting them know they’ve been tagged.

1. I love being a mommy of two. To be honest, I wasn't sure how having two children would change my life, but it is so much fun and I am learning daily little things that make my day-to-day life easier.

2. I had my bellybutton pierced at two different times in my life. The first time, it just randomly came out during the night and by morning I couldn't get it back in. The second time I had to take it out when I was pg. Now I have a goofy second hole in my stomach.

3. I enjoy scrapbooking, but never make it enough of a priority to get caught up. I always have something else that MUST be done...so sad!

4. I love to travel, but again, it is never a priority in our family. Our money is usually reserved for necessitites, not frivilous travel (but oh how I wish that weren't the case).

5. I am a reality tv show addict...seriously...I love them ALL! It is not good.

6. I have an entrepreneurial spirit, but my DH is very, very conservative and never wants to encourage that side of me for fear I will "blow" our life savings and retirement! :) Have a little faith, DH! hehehe

7. I haven't eaten red meat in over 10 years. I thought I would crave it when I was pg with Lil Bug, but nope. In fact, I just started eating chicken again in the past couple of years.

8. I don't enjoy my part-time college teaching job, but I do it so that I have a better chance of getting my dream job back again once Lil Princess is in school fulltime. So, what is my dream job? Teaching high school, of course. I miss it SOOOOOOOO much! Seriously, I can hardly stand it some days.

Ok, to the evil part...I tag: Emily, Joy, Nia, Leejo, Michelle, Shawn, Liz, and Liz (I'm sorry ladies...please forgive me!)