WAHOO!

Gabe did it! Brian is on his way and we are outta here!

Come on bowels!

No more NG tube. No more epidural. No more IVs. The drain will go today. Gabe is sitting and walking on his own. He's eating. His pain is well managed and much better. All we need now is POOP! He'll get some Miralax and another suppository this morning. So hopefully we'll be out of here tonight or tomorrow. Fingers are crossed. I don't think I've ever looked forward to one of my men pooping so much, ever.

What a day

Day #7. We're still going strong and Gabe is feeling better than ever. He was out of bed 3 times today. He took a few steps the second and walked to and from the toilet the third. Brian visited tonight and helped him walk to the bathroom and get back in bed. I think Brian realized how much work it takes to help Gabe move. Three of us had to help that time. Brian helped Gabe walk; the nurse dealt with the IVs; and I carried the cath bags. What an event! Besides the bladder spasms, he's in a lot less pain. He also had his epidural removed today. And, for the big surprize, Santa came to town! Santa, Mrs. Clause and a troop of elves visited the hospital and came to Gabe's room. They gave him a Sorry board game and took a picture. Gabe is actually smiling in the picture! Tomorrow, he has a chance to meet Chicago's mayor. I don't think Gabe is too interested, but whatever. He's sleeping comfortable now.

Sweet!

Gabe has been chattering away to the nurse about Plants Vs. Zombies for about 20 minutes now. So funny! I'm getting ready to put it on Uncle Tim's computer so he can play. Thanks Uncle Tim! Also, he was having some cramping and not feeling well. BUT! The lady from child life brought him a Chicago Bears build-a-bear, a Nike backpack and a Bears football signed by Charles Tillman. I guess he was here last week and signed a bunch of footballs. He donated them all to the hospital. THEN, we played bingo. Gabe won twice! He picked out a little orange pen and a metal John Deere tractor. He told me, "Mom, I feel better now." Well, off to kill some zombies!

How exciting!

Today, so far, is a good day! Gabe is napping and is calmer than he has been. The pain seems to be better. His doctor wants him sitting in the chair atleast twice today. He had some coco krispies. And at 1:00, we get to play bingo. Hopefully he wins because if he does Child Life will bring a prize cart up for him to pick a prize. We also were just told some students from the French pastry school are going to visit in a few minutes. If he wants to, they will let Gabe decorate cookies. If not, we get to eat some anyway.

End of the day

Today went pretty fast. Thank goodness. We were busy. It was a hard day for Gabe. He's exhausted, sad, scared and ready to go home. But it was a good day whether or not he wants to believe it. First, we got him out of bed and sitting in a chair. He stayed in the chair for about 1/2 hour. Not too shabby considering he hasn't been out of bed since 7:30 Thursday morning. Tomorrow he'll get in the chair twice. And the second good thing is ... FOOD! Real food! Food that needs to be chewed! He had Froot Loops! It all was awesome. Hopefully we're done for the night and have a good day tomorrow. I know one more good thing that could happen then. Just wait and see!

...And into the night

That catheter still leaks. The nurses had to change Gabe's clothes and bandages in the middle of the night. All the jostling around really makes him hurt. His hip started hurting too. Probably from having to lay down for so long. I think we finally got to sleep around 4:30 or so. The good news is that Gabe is HUNGRY. As soon as the doc makes his rounds, we're going to ask when he can eat something that requires chewing. He's getting plenty to drink. He asked for a popcicle at 3 am. Anyway, he's seems to be doing a little better so far today. He's even using the call button for the nurse. And he let me go for coffee while he was still awake, as long as I brought him a bottle of water.

Tough day

Pain really hit Gabe hard today. He started having bladder spasms, common in people who've had bladder augmentation from what I hear. And trust me, they are NOT fun. It was a long day for both of us. Fortunately, Gabe is able to take a medication that helps relax the bladder and lets him get some rest. However, he fought it. Gabe has never been one to take liquid medicines. We tried to get him to take it a couple times. He'd either refuse, spit it out or vomit. His nerves are shot. He's angry and tired. Now that his throat isn't so sore, we're going to try a pill. He's saving some fruit punch for the occasion.

Speaking of fruit punch, he's allowed to have broths, jello, popcicles and juices. Hurray! He was chugging some apple juice earlier and I had to stop him. He looked at me and said, "But it's so good!"

The pain management team has also changed the medicine in his epidural. It seems to be working pretty well. Well, except when the nurse discovered his superpubic catheter was leaking from around his belly. She had to flush it and change the bandages. Gabe, as you can imagine, didn't tolerate that very well. It was difficult enough to watch.

He's resting a little more comfortably now. He's even been pointing out funny things on TV and he talked to Brian for a minute.

So the day seems it might end a little better than it started. Here's hoping it lasts.

Hugs please

Gabe had a long night last night. He was in quite a bit of pain. The culprit? Bladder spasms. His nurse gave him some medicine to help relax those muscles and to help him get some rest. He's exhausted and wants to go home. Who can blame him? When I feel aweful, I'd rather be home, too. We'll see how this medicine works for him and hopefully he'll have an easier day today. The docs from pain management and Gabe's urologist are on the case. Maybe if he's more relaxed, I'll be able to give him a "bath." He's resting now so we just need to keep the nurses out of here for a little while. Good luck. In the meantime, it's snowing like crazy here. I have to blinds open on Gabe's huge window so we can watch it. It's kind of relaxing and definately beautiful.

Addy anyone?

Gabe and I are all settled in to his new digs, which includes a recliner, fold-out couch, huge window minus the helicopter view and less rooftops, minifridge and a 42" flat panel TV, that's right. Pretty sweet.

So, we're in the new room. Gabe also gets his NG tube out in the morning. He wasn't quite ready for it to go tonight. The doc said that he should be able to eat "semi-solid" food tomorrow, whatever that means.

In the meantime, I have an address for Gabe. If you want it, just let me know. I'm not going to post it online.

Moving day

The doc says Gabe should be moved out of the ICU today. Hopefully he gets a private room. I imagine he will. We had some other good things happen today and it's only 10:30 in the morning! One of Gabe's IVs - the arterial line - has been removed and his NG tube (the one in his nose) has been clamped. As long as his stomach can handle some water, it will be removed today. He had a couple sips so far. It's a start. Gabe will feel so much better with that thing gone. The nurses changed his bedding and his clothes a little while ago and I washed him up a bit. He's mad and sad but handling everything very well. He's such a tough kid. Brian will be here after work to visit. He's bringing me some groceries too. Lasagna. He's bringing me lasagna! All is well.

He speaks!

Gabe has been awake quite a bit today. It's good to see his eyes so much. But, I was missing his voice. His mouth and throat are so dry and sore. He didn't want the ice chips so he used a cool damp wash cloth. He'd wipe his eyes and mouth, occassionally wiping the inside of his mouth. At one point I looked at him and he had the cloth hanging out of his mouth. Whatever makes ya feel better buddy! He eventually started talking very quietly. What was the first thing he said you ask? Netflix. He should get paid for that. You can't get a better endorsement. Good night!

Good morning Gabe

Gabe slept a lot yesterday as you can imagine. So, at around 4:15 this morning I woke up to the nurse picking out a movie for him to watch. He's been awake most of the morning. He's still not talking but once he's able to get some ice or something he should feel better. His mouth and throat are very dry. He's sore but OK. He's comfortable and tired. He has his cozy blanket with him and a little puppy I found at the gift store. His surgeon was here a little while ago. He said the tube in his nose should come out today and Gabe should be out of the ICU maybe this evening.

As for me, I slept well last night. I was able to wash my hair this morning and grab some coffee and a bite to eat.

So far so good. But it's pretty tough seeing him like this.

Stay tuned...

Gabe, the final update for tonight

Here's what's going on with my Gabe-O.

We got to the hospital at 6 am. Surgery began at 7:45 am. We saw him in post-op at around 6 pm. A long 12 hours let me tell ya.

It didn't go quite as we planned but he's OK and resting comfortably. Gabe's nerves and anxiety got the better of him this morning. He had a pretty difficult time finding the strength to go to the OR. So, his surgeon let me go with him. I put on my scrubs, complete with cap and booties, and walked Gabe into the OR. I got to stay until he fell asleep. It was hard to see but not to do. I kissed him, told him I love him and left to met Brian. I lost it. At that point, Gabe had the easy part. He was asleep and numb. Brian and I on the other hand waited and waited and waited. The surgery, which was supposed to take 5 hours lasted for 9.

There was also much more involved. Since doctors can't see every twist and turn until they open ya up, his doctor's time estimate was a little off.

So you're wondering what happened? He had the bladder neck reconstruction with mitrofanoff. His appendix is now attached as a tube to his bladder and his belly button to form the channel for intermittent cathaterization. His bladder sphinter muscle was tightened. His bladder neck was moved farther away from the bladder opening and lengthened by using tissue from his bladder. (his bladder is a little smaller now but is very health and will grow). His ureters were mislocated. So they were moved to a better location. Oh, and how could I forget, since his bladder neck is behind his pubic bone, that bone was cut down the middle and separated in order for the doc to get to the bladder neck. Gabe is now the proud owner of metal wires holding his pubic bone together. (I guess we'll find out how airport visits will go now.) Don't get me wrong here, the surgery went well and Gabe didn't have any problems at all. However, he currently has a NG tube (through his nose and into his belly), an epidural, 3 IVs and 6, ya 6, catheters. All 6 will be coming home with him for about a month.

Its been a long, awful day for us. But even though Gabe is a mess with wires and tubes, he is OK. As for Brian, he was wonderful today. He stayed strong while I fell apart. In return, I was strong when he fell apart. He's home with the grandmas, Jonah and Emelia. And me? Well, much much better. The surgery is done. Now I help him heal. I'm good at that part. I'm not nervous, anxious, worried or scared anymore. All that went away as soon as I saw him in post-op. All the tubes and wires didn't even shake me.

Update on Gabe

It's 1:50pm. Gabe is still in surgery. But, he should be out in about an hour or so. Then we'll be able to talk to the doc and see him. It's been a tough morning for Brian and I .. tougher still for Gabe. He was not in good shape in pre-op, so his doctor let me go into the operating room with him until he fell asleep. It wasn't pleasant but I'm glad I got to do it. In the mean time, we're still waiting. From what we've heard so far, the surgery is going well but with some unexpected additions. More later.

Thank you

This holiday season, I'm most thankful for my growing epispadias family.

As Gabe's surgery approaches, we're scared and worried and nervous. All I want is to walk into post-op and see that he's OK. After that, it's just a matter of getting him healed up. Until then I find myself leaning on "strangers" who get it without an explanation. People I've only met online offer a shoulder, their wisdom and prayers. Strangers have found me and offered advice and their personal experience without wanting anything in return. People I've only seen once genuinely care. Some have been through it all. Some have guided their children, or still are, through it. Some are just beginning the journey and hope to learn from my experiences and Gabe's.

It's amazing to feel needed and supported through such a long, confusing, frustrating and painful journey. Gabe and I truly feel blessed to have been found by our new family. Thank you all for being here for us. I'll be sure to return the favor.

The Life Changer

Gabe's surgery is fast approaching ... Dec. 9.

I'm going to, hopefully, post updates here each day from the hospital. If he'll let me, I'll attach some photos so those who care can see he's OK. Because this surgery is a life-changer, it's important for me to chronicle his journey. I also want to share with you just how tough this kid is. He's amazing and I'm sure he'll prove that once again. So, I don't know if anything will get posted the day of his surgery, we'll see how it goes, but I'll be sure to post something as soon as I get a chance.

Stay tuned ...

Don't forget the fun stuff

Sitting here, eating a Twizzler, waiting for some work to do. Sitting and waiting. There is so much I have to do but can't. So I plan.

1. Schedule dentist appointment for G.
2. Return movies
3. Pay this week's bills
4. We need tortillas and probably milk
5. Fold laundry
6. Buy airline tickets for grandma
7. Etc.

Halloween is just a couple weeks away, then Thanksgiving, then 3 birthdays, G.'s surgery and Christmas, all by Dec. 25, and I still have to work and clean and take care of the family.

I'm feeling a little overwhelmed here. I'm trying to take it one step at a time but there just isn't time to take it slow.

What is an over-worked, over-stressed, over-tired mom to do?

1. Skip the dentist and make cookies
2. We didn't watch the movies so we'll go to the playground
3. Pay the bills
4. Get the tortillas and milk
5. Watch the movies while folding laundry
6. Get grandma's ticket
7. Run around like you are 4 years old, laughing hysterically while trying to catch your breath, arms flailing, and collapse into a nap.

What will tomorrow bring?

As the summer comes to a close and a new school year is upon us, I'm left to wonder what the next year will bring.

I realize that it will not be an easy year for any of us. Gabe has to start a new school year remembering how he was teased for something he has no control over. Then, have surgery in an attempt to fix it. With that comes an entirely different kind of difficult. Jonah will be in his last year of preschool, but in a morning class. He'll be hurt to discover that that means a whole lot less time with mom since I work nights. And Emelia has to start potty training soon or I'll lose my mind. My step daughters have to go back to their mom's house. I worry about them while they're there. There's always the possibility that my husband will be laid off or that I could lose my job. Lord knows we need more money in the bank, just in case. Well, that's the tip of the iceberg.

I don't mean to complain. I don't think I am, really. These are facts, after all. I just hope that we all make it through intact, as a family. I hope that the stress from having to deal with everything that lies ahead this year isn't more than we can handle. I just need to remember that everyone in my family is an individual and has their own thoughts, feelings, needs. I need to find a way to make time for them, individually, as well as myself. Not such an easy task, but, hey, I'm a mom. I'm tough. And I love my family more than I can say.

Ah, puberty

Let's face it. Puberty sucks!

I have no clue what's in store for me when my sons hit puberty. But, I'm really getting a good idea of how my daughter will be, thanks to my step daughters.

I'm learning all kinds of new things, things I didn't notice when I was going through it all. For instance, did you know that girls' breasts start developing about 2 years, on average, before they start menstruating? Or, that underarm hair is second?

But with all of it comes those thoughts. You know the ones. The ones most kids don't want to talk to their parents about. Well, these two girls like to talk about it ... to me. Maybe it's because I'm not their real mom. Maybe it's because I don't judge them but listen and try to explain. Maybe it's because I'm honest with my answers. It's strange regardless. I never thought I'd have those conversions with them.

I only hope that the information I give them helps them make good, responsible decisions.

Summer has arrived

When I'm wrong, I say I'm wrong. The girls have been here for 3 weeks and all is well. At least their behavior, anyway. They have been more help this summer, so far, than ever before and I'm proud. We're having a great time. No fighting. No hiding. Just laughing and taking care of business.

But, it hasn't been all good. Somethings have come up that I'm not sure how to handle. I can't go into detail. It's complicated and involves more people than just me and the girls. Let me put it this way: not everything is great. Things have been said to me in confidence that I can't begin to comprehend, let alone attempt to fix. Questions have been asked for which I don't have answers. There is pain there, sadness and confusion. And, again, I find myself at a loss.

I wish I could change things. But all I can do is say, "We are your family. This is your house. We love you and will always do our best to take care of you." I only wonder, will it be enough?

Summer approaches

Summer is always a time of celebration and excitement in our house — no school, playing in water, staying up late, ice cream and a lot of fresh air.

But, in our house, it can also be a time of stress and frustration. Not only because we have three young children and full-time jobs, but also because of stepchildren. I love the girls dearly, but, how do we get them to understand that they must follow the rules in our house even though they may not be the same as the rules at their mother's house?

My husband and I always butt heads with these two young ladies. We expect everyone, even the little kids, to help out. All of us have to do our part, especially with five children ranging in age from 2 to 13 in the house.

It's the same thing practically every summer. The first two weeks fly by so smoothly — we're all happy, helpful and having fun. Then, the downward spiral. Due to what we see as a lack of respect and bad behavior, we tend to avoid going places, like the zoo, water parks, etc. After all, if you can't listen at home, how can you be trusted to listen anywhere else? I would love atleast one summer to be more carefree, and anger free, so we could enjoy some little "staycations." But, no, it never fails. One small attempt at discipline derails the entire summer.

I'm happy that all the kids are excited about the end of the school year and their summer vacations. At the same time, I'm trying to prepare myself for yet another bad summer while trying to remain hopeful that it could be different this time.

I guess I'll find out soon enough.

What next?

Cornstarch, corn meal, glycerine soap, egg, peanut butter, cola drinks, baking soda, clarifying shampoo, baby oil, white vinegar, dish soap. All recommended to remove vaseline from hair. How do I know? I have a 2 year old.

I woke up this morning to her applying a rather thick coat to her hair, the night stand, the lamp and the bed. Everything cleaned up great, except the hair. So, today we tried the baking soda, dish soap, white vinegar and peanut butter. Yup. There is still vaseline in her hair. But, I did get most of it out. At least she's not leaving grease stains anywhere that her heads touches. Tomorrow, we'll try again.

By the way, the peanut butter worked the best.

Sanctuary!

I have buried myself in distraction for the last couple months, trying to keep my mind off my son's surgery. It worked, for the most part.

That distraction vanished, without a trace, Sunday morning. And everything was right there, waiting. But oddly enough, it wasn't just the impending operation. It was everything from now all the way back to when I was a kid. Every hurt I felt, every wrong, embarrassment, fear, all the loneliness. The numbness I've reveled in most of my life is melting away. Perhaps just feeling is making it worse than it really is. I'm finding it very difficult to repress anything. I don't want to cry, scream, loose my temper or patience. I don't want to feel like a burden. What I do want, and I'm finally not afraid to say it, is some one to listen. I feel, right now, that no one cares enough about me to see that I need help, that I can't take feeling this way. I can't just push it aside and move on. It's too big. I feel like I'm hurting people, I can't do anything right, that I'm not worth seeing or hearing. I haven't had this strong of an urge to hide in many years. And that's what I want to do, run away and hide, alone.

Hope and Possibility

Tomorrow is May 1, the day of the 2010 HEA fundraiser walk.

My family and I will be spending the morning with other people, and their friends and families, who have hypospadias or epispadias. What a special treat. It's like we finally get to close the door on the loneliness and isolation we've dealt with for the last 7 years and open another to what could be our new family. For all this time, I've wanted nothing more than my son to be able to understand that he's not the only one (well, second to the fact that I don't want him to go through this anymore).

He met one boy almost 2 weeks ago that lives 20 minutes away, he's only a year older than my son, and his mom will be one of my son's teachers next year. And, he also has epispadias and is incontinent. I know it's hard to say if they'll develop a lifelong friendship, but I sure hope they do. If I've learned anything in my life it's that everyone needs at least one person that truly understands.

What will tomorrow bring?

Speechless

How do you tell a 7-year-old that what he has to do will change his life for the better ... hopefully? How can he understand something that he's never known?

He was very upset during a phone conversation I had with him tonight. He started talking about his surgery in December. He's angry because he has to do it again. He's angry because his little brother "can stay dry." He's angry because of everything. I tried to tell him that without the surgery, he will always have to wear pull-ups. With it, he'll never need them again. How would he understand that? He's never been without diapers and pull-ups. He doesn't know what that's like.

I wish some one could tell me what to say to make him understand, to help calm his fears. I wish some one could just tell me what to do to help him. I don't want to hear all the b.s. answers, like: "Tell him everyday that you love him just the way he is," "Do your best to instill confidence in him," "Make sure he knows that you'll always be there," "Arm your self with information," "You can only do your best, the rest is up to him." Yeah. The sad part is that I'm guilty of saying this crap too. It's nice to hear. It's nice to have people, even though it's online, who understand and sympathize.

But why can't people just be real about the whole situation and just say the whole f***ing thing sucks! Forget all the polite conversations. Forget worrying about who may ro may not be offended.

I hate seeing him go through any of this. I hate that I've seen my son with tubes coming out of his body and needles going in. I hate that he's been "repaired." I hate that I've seen him sedated. I hate that I've seen him swollen from all the fluids pumped into his body during surgery. I hate that I know he vomits EVERY time he comes out of anesthesia. I hate that he's scared, angry, confused and feels isolated and embarrassed. I hate that, no matter what, I CAN'T take it all away. I can't make it better. I can't take away the pain. I can't make the kids stop teasing him.

I love him so much. I just want it to stop. Just stop.

Tattle tale!

Little kids, especially siblings, like to tattle on each other ... a lot.

Just the other day, my 4 year old just HAD to tell me that his 7-year-old brother went back to bed. Then he ran to his brother's room and said, "Mom said to get out of bed right now!" I said no such thing. I think it's quite obvious that the little one was trying to get revenge on the big one for an earlier incident. I believe a wedgie was involved. Boys.

Well, little girls are just a bad. Mine is 23 months old. She's sweet. She's cute. And she knows what she's doing. If one of the boys has something, no matter what it is, she tries to take it and and gets mad at them when they don't give it up willingly. Her scowl is the best I've ever seen.

There's the poking, pushing, copying, chasing, hitting, kicking and tattling. But, there is never anyone to blame. Go figure! It's a good thing that us moms have a eyes everywhere. I tell my kids all the time, "I have eyes all over my body!" I've often heard my stepdaughters, who are now almost 11 and 13, say, "How did you know!?"

But, how do you know when it's something more than just a sibling thing or even just a kid thing? Man, if I only had as many answers as I do eyes! If I ever figure it out, I'll let you know.

Pride and Pain

Children are wise. There's no doubt about it. But, as parents, I think we are often blinded by the daily routine of caring for our children. It's so easy to miss what's lying just under the surface. When we do discover this amazing attribute that fades far too quickly, if we are lucky enough to see it, it can knock you right on your ass.

I found myself in a situation with my oldest son the other day. I decided, in a rather spur-of-the-moment way, to tell him about his next surgery. I wasn't quite sure how to say it or what his reaction would be. I was surprised ... proud. He's 7 years old. His first reaction was, "The mask?" (as in the mask used to administer the "sleepy medicine.") "Oh, man," he said. He's 7 years old. I was expecting to fight for his attention. No. Didn't have to. He listened to everything I said. He paid attention. He asked questions that an adult would ask when facing a major surgery. Good questions. It was amazing.

He did grow concerned when I told him he'll stay in the hospital for a while. He thought we were going to leave him there, alone, until he could come home. That's when the pain hit. Like a knife driven into my heart, the emotions I've tried for so long to keep bottled came gushing out. I told him that I won't leave him alone in the hospital. I won't leave until he does. I told him that I've seen him go through so much in his life. That I wish I could take it all away. I said I know he's strong. If I didn't think he could handle it, I wouldn't make him do it. He's my hero. And I cried. He looked at me like I was crazy at one point. Then, we ended the conversation and moved on to more important things, like eating ice cream. Nothing more was said about the surgery for the following couple hours. Then, out of the blue, he came up to me, looked at me, wrapped his arms around my waist and told me he loves me.

Children are wise in the simplest of ways. Epispadias has been difficult for all of us. But, as his mom, I try to keep my pain and fear to myself. I guess I thought it would be harder for him to deal with everything if he saw his mom fall apart. That night, he taught me a lesson. It's OK to fall apart sometimes. No one is impervious to pain. Sometimes we need to see the true feelings of others to let us know it's OK to let it out.

Idle hands

You know the old saying: Idle hands are the devil's playground. In my case, the less I have to occupy my time, the more time I have to think about Gabe's surgery. It's still 8 1/2 months away.

I've found that, not only do I feel a little better but I'm smoking less too. It's a win win. I've recently joined forces with the treasurer of HEA (Hypospadias and Epispadias Association) to plan a fundraiser walk. It's not going to be like the breast cancer walk or anything. I think we have about 11 people participating. I guess it just shows ya how few people know about these conditions. It's such a small community. To narrow it down even more, only 3 of the 11 people actually have one condition or the other.

Anyway. Finding the time to help organize this event has been the best thing I could have done lately. If I didn't have this occupying my time, I'd probably be institutionalized by now. The worry and stress about his surgery is way too overwhelming.

Thanks, HEA. You've really helped me out. Hopefully I can return the favor on May 1.

Mother may I?

As we get older, we find ourselves fighting to become our own people and less like our parents, no matter how wonderful or horrible they were. But, somehow, they manage to leave a lasting mark.

Most women, I believe, hear at some point in their lives, "You're just like your mother." Well, depending on who your mother is, that statement can be hurtful, no matter how true or false. It is definitely something that should never be said to a pregnant woman. Take note.

Some one very dear to me, who's on the "I'm not like my mother" team, confided in me the other night. She was worried and scared and in desperate need of support and understanding. Most of her fears and worries were justified. However, the rest was based on something that's a bit unnerving.

Before I go on, let me say this, she's happily married. Both her and her husband are educated and have good careers. They have beautiful children. And have made a great life for themselves and their family. She's pregnant with her last child.

Without getting into a lot of detail about her life, there is no rational reason for her to be so upset (other than one particular thing that has nothing to do with what I'm talking about here). To put it simply, she's afraid of how her mother and father will react. But why? Why does their opinion matter? Her mother was never the nicest, most supportive person in the world. And God knows, her behavior and personality damaged her relationship with her daughter. So, why would my friend be so upset just in anticipation of her parents' reaction to such wonderful news? Why, after years of abuse, would she even care what they have to say? My only answer is this: After spending years hoping and searching for love and support from the people who should offer it the most, but never do, it's hard to stop. There will always be a need to be accepted by her parents. There will always be a longing for praise and love from her mother and father. Even though she knows that most likely none of it will ever happen, she'll keep searching.

That is, until one day, she takes one small step away and gets a really good look. She'll realize that these people are who they are. Nothing is going to change that. So, as the insults hurl and disapproval sneers, she'll simply say, "Whatever," and move on.

Pay attention

How do you know when your child is in trouble? Not necessarily with bad behavior, like fighting, lying, stealing, etc., but with depression.

I wonder because my son seems angry. He seems a little more withdrawn than usual. He's always been independent, a loner, but this is not normal for him. He doesn't want me to go anywhere without him. He doesn't look forward to school or talk much about his friends any more. He isn't as helpful as he used to be.

Now, he does have a birth defect, epispadias, that affects his private parts. He is incontinent because of it. I know kids have teased him. He's had five surgeries so far. He knows he's different. He does have a brother and a father after all. He doesn't want to talk about it. When I bring it up, he starts to shut down.

I'm not sure how to handle this. I don't know what to say or do to make it better. It's not something that our lives revolve around. It's just a part of life. We deal with things as they come and we're open and honest about it. I love my son. I love all of my children. I try to make sure they know that. I laugh with them, cry with them. I hold them. What else can I do but to let him know that he's loved no matter what? How can I make it better when he doesn't really understand what's happening and why? He's not quite 7 years old and has had more pain in his life than I.

It's been recommended to us that we find a counselor for him when he's closer to puberty to help deal with the psychological and emotional problems his condition may cause. I agree. It's a great idea. But why not now? I thought about calling the school social worker to see if he/she can talk to him from time to time. But, more than likely, that person won't know how to deal with a child with epispadias since it is so rare. But, perhaps we could get a referral for a counselor that can help. I'll have to look into it.

My point to all of this is pay attention. Young children can get confused, angry and depressed just as much as adults. But, if you don't see the signs, and they may be subtle, it all could get out of control. My son has never been one to let me know when he's sick, hurting, sad or angry. So I've had to rely on my instinct and my bond with him. If I didn't know him as well as I do, who knows what I would be missing.

Refreshing!

I've recently had an epiphany. An awakening of sorts. I believe it was brought on by my most recent trip to Kohls. Anyway, I realized that I spend too much time being a mom and not enough as wife. Oh, he's so neglected! Not really, but I feel like we need to get back to basics, as much as we can with 3 kids in the house.

It's easy to place blame on every thing else for my exhaustion and stress. But, I thought about it. How much of that stress and exhaustion was caused by me? Well, the answer is simple... a lot. After all, I need to realize that I matter too and that it's OK to stand up for that. So, I did and do. No more kids tailing me where ever I go. The bathroom would be locked if I could lock it. Sorry, baby, out you go! And, ya know what, my husband is perfectly capable of taking care of the children, something I was a little reluctant to find out.

I got back to basics: Pick your battles carefully, wash your dishes, love your family and NO KIDS IN THE MARITAL BED! I MEAN IT!

The problem is that the smallest bump could derail all my progress. How long is it going to be before I get pulled back in?

What does the future hold?

You look at your child the day he's born and see a miracle. You fall in love with the little person you've only just met, despite what he looks like or how much he's crying or the pain you felt before he was born. You hold him in your arms, kiss his head, and stare in quiet amazement at what you've created. Perfect.

Then you hear, "This isn't normal." Your world screeches to a halt in one quick moment.

That was my experience when Gabe was born. Little did I know that his journey over the last nearly 7 years was going to be so long and difficult. And it's far from over. You'd never know by spending time with him, talking to him, that anything was different. But he knows. I know. Five surgeries done, one lurking around the corner, and God knows how many more.

I've seen my son sedated, medicated, on IVs, with catheters and bandages. I've seen my son scared. In pain. I've seen my son in pain. He knows what surgery means for him but he doesn't know, yet, about the sixth.

How do I tell him that just 10 months after his last surgery that he'll undergo a major one. One with a long hospital stay and medicine that will numb his body and a huge incision on his little belly. How do I tell him that he won't be able to run and play and wrestle and ride his bike for 3 months? How do I tell him that he may never be "normal"?

The ever-present guilt

Yes, it's true. I'm a mom and I feel guilty, not for treating my parents poorly when I was a kid, though. I just feel guilty. Every thing's my fault. Can't do anything right. No, I'm not in the midst of a pity party or anything. It's just the truth.

Nobody bothered to tell me before I become a mom that I would struggle with mass quantities of guilt. I was a stay at home mom for a while and felt guilty for not "contributing." I got a job and felt guilty for not being a full-time mom. I take it easy and pick my battles carefully but feel guilty for not upholding the law (of our house). I crack down on the kids and feel guilty for punishing them. After all, kids have these big, beautiful, innocent eyes that ... well ... I'm a sucker, what can I say. I can't help but feel that every little rash, cold, tantrum, mess, tear, low grade, cavity, cough, etc., is somehow related to something I did. So, imagine my guilt when my son was born with a birth defect. The doctors say there is no known cause and have reassured me that it's nothing I did. But, the guilt lingers, 7 years later.

I know I'm a good mom. My kids are happy, healthy, kind, intelligent, beautiful children. They are always happy to see me and always want me around, even if I had to punish them for breaking a mom law. I know that, despite not having family close by or many friends, I do the best I can for my babies every day. So, why do I feel so guilty so often? Is it something I did that I don't realize I did? Or is it simply just a curse that all mothers must face?

...and then there's the jargon

I look up everything.

I search and search some more until I'm satisfied with the answers I've found.

I've learned over the last almost 7 years that sometimes you just can't find all the answers. And then there's the jargon making it nearly, if not entirely, impossible to understand the answers. Medical terminology is not my friend. I find it overwhelmingly frustrating to be face to face with the information I need and not be able to understand it at all.

Epispadias. Ugh.

Epispadias is a rare birth defect, affecting about 1 in 117, 000 boys. It involves the urinary tract and genitalia. It can cause urinary incontinence. It can affect a person's confidence and emotional and psychological well-being. Sexual health is also an issue. It requires multiple surgeries to repair and takes a toll on the patient and family. That's it in a nut shell.

In December, my son, who will be 7 and 1/2, will have bladder neck reconstruction to correct his incontinence associated with epispadias. It will be his 6th surgery and the most complex. He'll be in the hospital for a week, if all goes well, and recovering for 3 to 5 weeks more. The kicker? He may never be able to use the bathroom like everyone else. Instead, there is a great possibility he will have to catheterize himself for the rest of his life. As a matter of fact, during the reconstruction, his surgeon will create a channel from his bladder to his bellybutton using his appendix. It's called the Mitrofanoff procedure. If the reconstruction is a success, my son will never have to use it. Here's hoping. We'll know in about 10 months. Seems so far off.

In the meantime, I search. The more information, the better, I always say. But, the only information I can find is so complicated. I don't understand most of it, other than it doesn't sound good. I've found support and hope through HEA, Hypospadias Epispadias Association. It's a wonderful group with many understanding members. But, I still feel alone. And, unfortunately, my son is starting to feel isolated too.

Why can't there be a mom-friendly version of all the information doctors publish?

Why not? Really. Why not?

I'm a working mom. I'm busy all the time. My day usually starts around 7am and doesn't end until about 1 am. And who's to say I'm actually done? If one of the kids is sick, well, who knows when it'll end. Using the words mom and exhausted in the same sentence is a little redundant, don't you think?

Anyway, my husband, who I love very much but just doesn't get it sometimes, told me the other day, "You should get yourself a hotel room this weekend." Um, OK? No. He says that I need to get my rest. Yeah, that's true. You see, he knows that if I'm in the house the kids will use their mom-seeking radar to find me, no matter how hard I've tried to hide myself for just a few more winks of sleep. This isn't the first time he's said something like this. And it's not first time I've played it off as some kind of cruel joke.

So here's my question. Why not? I mean, really, why not? What would happen if I did take him up on his offer to get away for a night just to sleep? The possibilities are ENDLESS! Would I feel rested, I mean, if I was actually able to fall asleep without sharing the same building with my kids? Would he feel taken advantage of? Does he even mean what he said? Maybe he only said it because he knows I would never take him up on it. Who knows?!

In the middle of the night...

Let's start this with a question. Have you ever had a nightmare about your kid(s)? Not just any nightmare, like losing your kid(s) at the circus while monkeys wearing top hats are chasing you with rubber ducks. I mean a terrifying, gruesome, vivid nightmare. A nightmare you can't seem to wake up from but when you do you are completely confused and wondering how in hell you could dream something like that! Now, let's be clear, I've had dreams like this before but they were usually about another adult, like my husband or ex-boyfriend. I really wasn't that confused afterward. 

I don't know that much about dreams and where they come from. I can't interpret them. I don't think anyone really can. Check it out for yourself. Look up dreams on the Internet just to see the number of theories that exist. 

I like to believe that each dream is different and can be very personal. Here's what I mean:

1. Happiness, excitement: Could be shown in a dream about seeing your baby's face through your pregnant belly

2. Revenge, anger: Noted by a natural disaster killing off family and/or friends, anyone that has wronged or hurt you

3. Fear: Watching a stranger attack your loved one could reflect this

4. Sorrow, grief, regret: Simply seeing the image of someone you've wronged or miss could be an indicator

5. self-pity, self-loathing, introversion: You, as the dreamer, becoming involved in activities that prove harmful, emotionally or physically, to yourself could be reflected.

These of course, are my own ideas. So, after dreaming of my son last night, I needed to "discuss" it. I can't get into much detail, as they fade over time. I can give you the gist. My family and I were at a store with a few other people. A man and a woman try to rob it but it goes awry. I manage to escape with my cell phone. Everyone else is locked in the store. I'm sitting in a car, hiding my phone and waiting for the opportunity to call for help. It slips. The woman sees. I grab it and run. She runs into the store. I walk to the back of the store. Many people and cops are there. They shoot her several times. My son comes around the corner, surprising the cops, and is shot. He didn't die. I woke up before that could happen. I couldn't sleep for the rest of the night.

I questioned myself as a mother, as a human being. How could I! Why would I dream such a thing and about my own child? I still don't know. But I do think it has everything to do with how much I worry about him and how, sometimes, I feel like there is nothing I can do to help him. Am I crazy or just a normal, stressed out, working mom?

One of those days

Today started out not like most days. Even though I still had to wake up with the baby at 1:30a.m., I did get to sleep until 8a.m. But, I still don't feel rested despite having slept for a total of 7 and a half hours. I think it's because for the last 6 years and 10 months I haven't had a solid 8 hours of sleep in a night. 

Waking up an hour late, at 8a.m., gives me plenty of time to get in almost a full day of kids and chores before heading off to work, which I don't get to leave until 10p.m. Ugh. Today, however, was a little more trying than most. You see, my darling baby girl does this thing where, if I'm home, she cries ALL DAY until I leave for work. That's difficult enough to deal with but having to hear about how she only does it when I'm around infuriates me. It's like rubbing salt in a wound. It doesn't help, so why do it? Stress and anger. Great way to start the day.

So, here's my question. Why do our "better halves" feel the need to point out things like this, even when they SHOULD know that it hurts us? It's like saying, "yes, you do look fat in those jeans" when clearly they know it will sting. Why not say instead, "they don't seem to fit as nicely as the other jeans," or "how about wearing that dress today?" Anyway, I really don't think I would get so offended if he didn't say it so straight-to-the-point. Maybe say "why don't you leave for work early so you can buy a new wardrobe?" I'd even settle for "she was fine last night. I wonder what's going on?" or "she's been doing this to you a lot lately. What do you think she needs?" Well, I know what I need. And, I think I know why she's crying so much. She's teething and needy so she turns to the one person that is most comforting to her. Makes sense but, man, can anyone else try to help her!?

Welcome moms!

I'm a mom, just like you. And, whether we want to admit it or not, we never have ALL the answers. Half the time I don't even know what the questions are. So, in an attempt to better myself — not only as a mom but also as a woman — I want to put it all out there for you, no holds barred. 

I don't pretend to know it all. I don't even care to give advice. I just want some one in the world to get it, ya know, what it's really like to do what I do everyday. And, maybe, some one can relate to my experience, bringing us closer together as a community of moms.

I have a husband, three kids, two step-kids, a house and a full-time job. I also live about 500 miles away from my family, except one brother. Two kids have asthma, one has Epispadias and another is, well, a crazy one and a half year old. I have a great life but unpredictable and difficult at times. I'm sure you can sympathize!