They Say Everything Happens for a Reason

It's been quite some time since I've written a blog. There have been lots of changes in my life, the world as I know it has changed. I lost my waitress job in the beginning of July, then at the end of September I lost my other job, that I've had for the past 12 years (minus 2 months).

The waitress job I lost because the restaurant closed down, we were given 2 weeks notice. It was sad and sucked, but it is what it is. Not much you can do when the owners decide to close.

At the beginning of August I started a new part time job right next door to my other office job. In fact, they are part of the same family. This was convenient, the same building, the same family, not so new and scary. The plan was to work this job until my other company merged and I would go to full time again.

The time came where my company was merging with a large frm out of Dallas. It all seemed like this was going to be great for the company, great for m boss and great for me. I was told for about a month that I would be getting an offer soon from the new company. I didn't get the offer until the week before, when my boss was there to finalize the merge. Their offe did not include a job description and it was lower than I was expecting. I asked my boss if the offer was negotiable, and he told me to speak with HR, which I did. I explained to HR the salary I was looking for and explained why. Mostly due to the fact that I hadn't received a raise in 5 years and he industry standard was higher than what they were offering.

The HR woman seemed to understand and she even stated that I cannot accept an offer like this without a job description. The offer expired the following day and she told me she would extend the time, send me a job description and talk to the executives about my request for a higher offer. I never heard back from her.

My boss returned fom his trip, I briefly talked to him about it and was told that there would be a conference call on Monday afternoon to determine what their new offer would be. The merge was happening the following day. My boss ad me put together an email announcement and do some other thigs to prepare for the merge. They came to me and told me they were dissolving our company and switching over to the new one. So they were going to pay me to date and pay me for my unused vacation time. Seemed like a good deal.

The call happened and I was called into my boss's office to discuss the outcome. Much to my surprise, I was fired right then and there. I was told that they decided to go a different route. I was devistated. My boss didn't seem to show any remorse whatsoever. His wife on my right was bawling here eyes out. I think for the nex hour she apologized to me 20 times and asked if there was anything she could do. In one of my not so better moments, I snapped back at her and told her, "yes, find me a new job". I went to my car to regain my composure and returned to the office to collect my belongings, the boxes were already sitting by my desk. These boxes were being used last week and when I asked about the contents the week before, I was told that we no longer needed the contents, which was bullshit, he needed to boxes to send me packing.

It's been a month since I lost that job. To this day I don't even know if I did something wrong or what to result in this. I was alwys taught to stand up for what I believe in, which is all I did. I asked to negotiate my offer and it seems as though I was fired for that. Had the told me their offer stands as is, I likely would have taken it because a full time job was better than a pat time job or no job. But they didn't do that. I am sill working part time at the family business next door. I was replaced a week later and I am still looking for full time employment. Right now I am bringing in a measly $200 a week and my husband has no income. I have about enough money to last another 3-4 weeks, which isn't long. My insurance expired yesterday too.

I'm sending out resumes, answering ads, doing all that I know I can do. I have had a few interviews, but no real job offers. I am staring to get scared..... really scared.

People tell me this all happened for a reason. That when one door closes another one opens. I hope this is true. I am not convinced of this yet since the new door hasn't opened and nothing better has happened to me. I feel like I keep sinking further and further into this crap hole situation. I can't even provide for my family and that makes me feel like a piece of shit. Stay positive they all say. I wish I could, but until I can support my family, there's going to be negetivity.

Want to Walk a Mile in My Shoes? I'll Throw in a Broken Toe for Free

It's been a rough month. Todd passed away, so Paul had some big shoes to fill by going to a fishing tournament in his place. I support this trip 100%. It's good for Paul to get away from the daily stresses of our life here. Speaking of.... last Wednesday, I lost one of my jobs. This was the job I got to make ends meet when my full time job went part time. The restaurant I have been working for decided to close down. This was a pretty big pill to swallow. I can't even imagine what the other girls are going through. I was the new girl, even though I was there for a year and a half. A few of them have even been there since it first opened. Not only was this their job, but it was a family and a home to them.

I am keeping my chin up, despite how hard it is. Maybe this is the opportunity for something better to come along. I have not yet decided what path to take, but I am trying to find another job, whether it be an office job or another server job. This whole thing has not been easy without Paul around, but I think it's best that he's gone. Jesse is gone too. Saturday I drove to Wisconsin and came home Sunday by myself. Jesse is better off with them, he doesn't need to be around me like this. I will pick him up tomorrow.

It was incredibly strange being in my house yesterday all alone. The two biggest loves in my life were not there. I think if I weren't in this situation, I would have loved this, but I am sad, and being alone is not always good when it's accompanied by sadness.

To top it all off, last Wednesday, I also broke my toe. Well, I think that's what I did. I slammed it on the sliding glass door. I assume it's broken, but I suppose I don't know for sure. There's not much that can be done for a broken toe, so what's the point in finding out if it's actually broken or not. I just hope there's not any more damage than just being a broken pinkie toe. It has all sorts of colors. It will look pretty sweet when I have the Color Vibe 5k in 2 weeks. I know I won't be able to run, but I am still going to do the 5k, even if I have to crawl.

That would be my broken toe/foot

Before the shit hit the fan, we were able to get the boat out on Father's Day. I was supposed to work, but they called me off. We took that opportunity to do something a boy and his father would both enjoy on Father's Day. It was Jesse's first time on our boat, he was on cloud nine!

Father's Day gift Jesse made at daycare.

 This kid has also become quite the little acrobat. I don't even know what to say to this.


Just watching tv.

I like to think everything happens for a reason, even though I am not quite sure what the reason is, I'm sure another door will open because of this and I can only hope it's for the better.

I had a friend say to me today, "You know what I love about you? You're a go getter. You have been through a lot since I've met you and you don't just sit in a corner and cry, you just keep moving! I <3 you.="">I love that!

Catch Up

I have not been good about blogging. You'd think with all I have going on I would feel the need more, but for some reason I don't. I have been busy. Things have been hard. Once again, I've put on the happy face while I cry inside. I'm sure that's not good for me, but I can't exactly walk around crying and feeling sorry for myself.

We don't seem to have a lot of support lately. Close friends and family are no longer helping and my parents have been in Florida. When times are tough and you need help, sometimes people's true colors shine through. Things are hard enough as it is, I don't need the extra negetivity. I've made some decisions to eliminate these people from my life.

Mother's Day came and went, which meant extra work for me. I need the money, but it creates extra havoc at home. You see, Paul saw the pain management doctor recently and he's decided it's time to come off the medications. We were under the impression that you should wean off neuro meds, but apparently this doctor doesn't think so, he was cut off cold turkey. Paul's been having ups and downs and certainly withdrawls. He doesn't feel well in the head and his body is detoxing. People get this, but I don't think you can understand it until you are there, experiencing it first hand. People also forget how this effects the people around the person experiencing it too.

Jesse made this for me at daycare. LOVE!

On top of this Paul was given clearance to return to work (with limitations/light duty). It's a good thing. I am not sure Paul is there (physically), but it is what it is and we have to move forward. We are waiting to hear from his employer to find out if they have a light duty position for him. If they don't, he should continue to get work comp pay and we will start the settlement process. If they do, well, I am ot really sure what will happen. Last time he was sent back to work, his back and the pain got worse.

Last week we got some very sad news. Todd died. It's not easy explaining who Todd was, but he certainly meant a lot to Paul. Todd was Paul's older brother (from another mother), his mentor, his boss, his friend. When Paul was a teenager, still in high school and misbehaving, his father wanted him to know work ethic and what it meant to work hard and have structure, so he put his son in a truck with Todd. I am not sure Paul's Dad knew what he was doing sending a 14 year old boy across the country with a 24 year old man, but it did teach Paul about life. Todd taught Paul about life. Todd was the one Paul wanted to make proud. Todd's death devistates Paul, which I am not surprised, we always seem to get kicked when we are down. But maybe in all this we will learn yet another lesson, to take better care of our bodies, because you never know when your body will fail us, like Todd's did.



Todd and Justin (Father and Son)



My son is my inspiration through everything. If it weren't for him, I think we would have both given up a long time ago. We continue to do fun things with him, even if we don't feel like it or if Paul is in pain. You have to keep living, especially when a child is involved. In the past few weeks we made a trip to the zoo, saw the local air show, made some trips to the park and did some playing in our yard.



The zoo has had these things since I was a kid. They won't last forever.



Running

I think the entire world is aware of what happened in Boston. No need to explain. I'm sad about it. A lot of people are, even if they were not directly effected by it. I did not know of anyone at the Boston Marathon, but the images are horrifying and I can't help but feel emotional. I think when something like this happens, an act of terrorism, I am effected more than I would be from something like a shooting, whether it be multiple victims or just one.

I commend the people who were first responders. I honesly don't know how I would react in that situation. Would I run to help or would I run away? I hope I never find out. I hope I'd be a person to run and help, but I just don't know. Fear changes things. REAL fear.

As we all know there were 3 deaths. It's amazing to me that there weren't more. But 178 people were injured. These aren't minor injuries either, many of these people lost limbs and/or had debris in them. As many as 10, 20, 30, 40 pieces of debris. It's almost unthinkable. People will remember this event as vividly as we remember 9/11. Terror does that to people.

Recently I signed up to run a 5k and I am not even a runner. I am not even in any kind of shape to run. But I was pretty much asked (indirectly) to run and I was also (indirectly) asked to be a Captain of the AmeriFace team. I am an active volunteer for AmeriFace, I am a Pathfinder Coordinator for the Chicagoland area. AmeriFace was there for me when my son Jesse was young and I had a hard time dealing with his cleft situation. Once I got myself together, I became a volunteer so I could help others like they helped me. How could I NOT volunteer for the 5k? It will help the organization I feel most passionate about and this is for my son. I will do this, I CAN do this. Since Monday's events in Boston, I feel even more passionate about doing this run. I want to run for AmeriFace, but I also want to run for the people who were in Boston and CAN'T run anymore.

Unfortunately it takes events like this to appreciate the things we have. Our freedom, our loved ones, our health, our able bodies. I may not be the healthiest person, but I can get out there and give it my all, and I plan to do so.

"The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education.

We support individuals whose facial differences are present at birth, as well as those who have acquired facial differences as a result of illness, disease or trauma, such as stroke, cancer, accident and burns."


Please join me on July 6, 2013 in the Color Vibe 5k by registering at the links below. If you don't want to run (or walk) and would like to support me, you can make a donation to the AmeriFace team by visiting this link. Team AmeriFace there's a box that says, "Team AmeriFace Color Vibe 5K"


Join Team AmeriFace at the Color Vibe 5K in Chicago-Aurora!
http://www.thecolorvibe.com/aurora.php
Register NOW at https://colorvibe.webconnex.com/aurora2013
Choose "Team AmeriFace"
Password "smile"
Charity Code 32-0085490

Be sure to let us know you've joined the team at
http://www.teamameriface.org/join.html


Then download the Sponsorship Packet at
http://www.teamameriface.org/FUNdraising.html


Thank you for your support!

He's Three!?

Although Jesse doesn't want to admit it, he's 3 now. He still proclaims, "I'm 2!" When did my baby turn into a little boy?

We've been busy. We had my niece and nephew's birthday the week before Jesse's. Then his birthday. We planned a party at our house for immediate family and a few close friends. Jesse had an ear infection a few days before, so I got him on anti-biotics to clear it up as soon as possible. It worked, but the day of his party he started coughing. I thought it was related to the ear infection drainage, but it wasn't. He was sick. Sick for his own birthday party. He was ok the first couple hours, then he was passed out sick on the couch. He missed cake and present opening. When he woke up, we let him open presents, but by then almost everyone was gone.

Since his birthday was the following day, Easter, we decided we would celebrate then. I was supposed to work at the restaurant in the morning, but the head server called me at 9am and asked me if I wanted the day off (she knew it was his birthday). Even though I needed the money, I took the offer and stayed home with my baby on his birthday. We let him play with new toys. The weather was nice so we spent time outside. We had a few friends over and celebrated again, this time there was cake.

Bubble Blower, an Easter gift

Loved his new Big Wheels

One thing that Jesse's always had issues with, due to his clefts, are sucking and blowing. He started sucking shortly after his palate surgery just before his 1st birthday. Since then we have been working on blowing. We have used bubbles, cotton balls, whistles, straws, etc. There are many techniques used in helping a child blow. This year it was very important to me to watch my son blow the candles out on his birthday cake. I didn't even want to practice with candles because I wanted it to be special, for me and for him.

We sang "Happy Birthday", his face lit up with joy. I had my camera ready for all the necessary birthday cake shots, then the moment of truth came and he did it! Blew each candle out one by one, but he BLEW! Most mothers wouldn't be proud of such a task, but to a cleft mom, it meant the world!

A funny thing happened a few days later. Jesse had gone to bed and we had a ton of leftover cake (as we were expecting to serve it to 15+ people). He had come out of his room and popped around the corner to the kitchen, saw his cake and asked, "Is it my birthday again?" I was so sweet and innocent.

Post-Op Post

It's been a rough week, Paul had the stimulator surgery last Tuesday and it was a success. There was a snow storm coming but that wasn't going to stop us. The hospital was only the next town over. In anticipation of the storm, Paul's parents picked up Jesse Monday night and were keeping him until Wednesday. That was a huge weight off my shoulders. Knowing he would be taken care of and I didn't have to worry about anything with him. Last time Paul had surgery, my family was able to help.

We arrived before dawn, and strangely the storm that was supposed to start at 3am, was delayed. So we got there without issue. It was a standard pre-surgical morning. I have been through this process 5 times at this hospital, so I have the drill down. I don't need the instructions to follow the Orange X and I know I am going to see the overly nice volunteer guy when I get to the end of the Orange X's. He checks you in, gives you the Patient ID Number, takes down my name and cell phone number for emergency and so they can tell me when I can see him. Then they take us back so they can do his vitals, get him in a gown, start the IV, etc. When they wheel him off to surgery, he goes in one direction and I in the other direction, back to the waiting room where I see the overly nice volunteer guy again and wait.

I hate the wait. I always go back out to my car. If any thing's going to go wrong, I assume it won't go wrong in that first hour. I'm probably wrong, but that's what I do. I sit, reflect, send out texts to the appropriate people and tell them he's in surgery. I usually eat something before my stomach will no longer accept food, then head back to the waiting room. After a few hours I am met by a young man in his blue scrubs. This time he sat down next to me instead of taking me into the dreaded Panic Room. The Panic room is that room on the side of the waiting area where the doctor talks to you. This room is usually for when they tell you bad news or something private that they won't tell you in front of the other people waiting for their loved ones. I've been in this room before, it's small and comfortable, but is sound proof and has no windows. I met with Jesse's doctor in this room after surgery, not because anything was wrong, but because he was an infant and hospitals usually take privacy much more seriously with children. I was relieved when the doctor sat next to me. No Panic Room = Good News.

Surgery was a success and I can see him in about 45 minutes after he wakes in recovery. Deep breaths. It's going to be ok. I head back out to the car (the only real place to get some privacy at this point), call his parents and make the appropriate texts and updates that surgery was a success. That 45 minutes turned into an hour and a half, but that's ok, I knew he was safe.

I walk into recovery and he's there with the representative from the stimulator company. She was programming it. She briefly told me how to use it, but my mind was already so drained, that I didn't retain much. Then we headed to a room and got him settled.

 My view from his room.

After a few hours of watching him and the snow accumulate out the window, I decided I need a break, lunch and to run home before it got too bad out there. It was about 2:30pm and it had been snowing for hours, but I could still see the traffic moving on the clear busy road below. The news said the snow would be the worst during rush hour, so I took the opportunity to go. I hit a drive-thu for lunch and headed home. I ate, shoveled some pathways, let the dog out and packed a bag in case I was in for the long haul. I headed back around 4 and stayed until 11:30pm. The snow was starting to come down heavy, I made it back just before the roads got bad.

My buried car

The front of the hospital, about 9pm

When I returned, Paul had already been up and walking once, he got an appetite back and was on the road to recovery. The first night's never easy. I hate just sitting there, watching my best friend and the father of my son sit there in pain. You would think it would get easier when you've done it before, but it doesn't. It may even be harder because it brings up memories of the past. I didn't even want to leave him, but I knew I needed a break from all of it. I went home for the night and was greeted by an excited pup who was dying for a run in the snow. So I geared up and tried to shovel some more. It was thick and heavy. I think the official count was 7-9 inches of snow. Not THAT bad, but the biggest snow we've had this season. I slept a few hours and headed back to the hospital. Of course I missed the stimulator tech and only caught the tail end of the surgeon's visit. He was released to go home.

It was easier for both of us to relax at home, but Paul was definitely experiencing a lot of discomfort. I've been doing my best to keep him comfortable. Playing, nurse, wife and mother is not easy, but not impossible. I picked up Jesse Wednesday afternoon. He doesn't understand, except that Daddy has owies on his back. Finally, yesterday he seemed to be better. Good enough to be out of bed for more than 15 minutes and getting his personality back. The hardest part is over and we can start looking into the future again.

A Crazy Couple Weeks

I knew this month was going to involve some changes, I never realize how much would actually change. I found out my job may change significantly, Paul's surgery was denied, then later approved, we had our last appointment with our cleft team and visited a new one, and Jesse was evaluated with the school system to see if he qualifies for more speech therapy.

My job: My boss came to me one day and said we might be closing the business and join another one. At first I was terrified, but after discussing it more with him, talking to a friend in the industry (who made a similar move herself) and thinking about it more, this is a good thing. Nothing is in place yet and my boss hasn't made a final decision, but he has stated that if he's going, I will be coming with. He won't go without me. That's very comforting. I also realized that this would be a longer commute and less convenient, but it would involve more money, good benefits and  more opportunities in the future. If this all happens, I will be able to support my family on one income and I won't have to work two jobs.

Paul's sugery: Paul's been waiting to get the spinal cord stimulator. The trial was a success and if they approved the trial, they will approve the stimulator, right? Wrong. A couple weeks ago the attorney contacted us and said that they were not approving the surgery because they have surveillance of Paul doing something he shouldn't be. This was harsh, Paul doesn't do anything he shouldn't be because he physically can't do those things. he was pretty bothered by this, in big ways. He began driving himself insane trying to figure out what he did that he shouldn't have. He came up with some theories and the attorney said he would request a hearing so we could find out. Then, out of the blue we got another call saying surgery was approved. I believe this was a tactic of theirs to try and get Paul to back out, as if he was defeated. I would not let that happen even if he did give up. The attorney said they likely got false information and nothing was actually found against Paul. Either way... surgery is now scheduled, for March 5th.

Last week we visited Shriner's Hospital. It was definitely a different experience. Inspiring. I left there with a better feeling than expected. They know what they are doing there, they have a great team and the system they use is unique, yet effective. They must have seen 15 other kids that day. They put you in a waiting area with all the other families and call your name, you see one of the doctors and then you go back to the waiting room. The waiting room has a tv, books, toys and all the other kids. Plus, we didn't wait more than 10 minutes before our name was called again. We met with a Social Worker, a Psychologist, a Speech Language Pathologist, an Audiologist, an Ear, Nose and Throat doctor, a Plastic Surgeon and a Nurse Practitioner. We even saw a Photographer. They gave us a lunch break from 11:45-1pm. The cafeteria was very cheap, had decent food then there was a play area for the kids to unwind. Everyone we met with said Jesse was doing great, even with his speech. The psychologist was very impressed with his mental development and commented on how smart he is. She recommended we make him a book with his surgery photos and before and after photos. I will pick up the prints tonight and get that together for him. This Friday we are also going for a consult at Lurie Children's Hospital. I know a few families that already go there and they love it. As much as Shriner's impressed me, I think Lurie will give us more personal attention, which is what I'd prefer.

 We FINALLY got some snow! Jesse and I made a snowman. He was a little sad the next day when he melted a little and his face fell off.

It's stuff like this that makes the rest of it all worth it. This beautiful little soul keeps me going though it all. 

I Wish I'd Known...

We've had a lot going on in our cleft world lately. We are currently looking for a new cleft team for Jesse. His old team closed their doors, the plastic surgeon decided to open her own private practice, so she will still be performing plastic surgery, but the "cleft team" is dissolving. There are a handful of cleft teams in the Chicagoland area, I've been doing my research and talked to other parents about their teams and experiences. We've chosen to meet with Shriner's Hospital and Lurie Children's Hospital. We narrowed it down to these two because they are both children's hospitals and if Jesse does need another surgery, I would prefer it be a children's hospital.

We have appointments set up for the end of February and early March to meet with both teams. I am excited and nervous. I am interested to see another plastic surgeon's take on Jesse's clefts and surgeries; I am also interested in a new speech evaluation. I don't have any major concerns about either, just maybe some fresh eyes/ears might be a good thing.

In addition to finding a new team, we are also nearing Jesse's 3rd birthday. When he turns 3 he will be transferred out of the Early Intervention speech program and entering the school system. I am waiting to hear back from the Child & Family Connections coordinator to get that scheduled. If he qualifies for their program, he will get speech and pre-school for free. Of course I have mixed feelings about this. Free pre-school would be great, but I hope Jesse's speech is far enough along that he doesn't need to be in the program.

Lastly, last week I submitted Jesse's Story for a book called, "I Wish I'd Known How Much I'd Love You." This is how the website describes what the book will be, "We are creating a book of stories, photos and cleft related information. With this book, we hope to bring encouragement and support to parents of cleft affected children."  http://www.iwishidknown.yolasite.com

I took the story I wrote for MiCleft.org and revised it a bit since it's been about a year and a half since I wrote it. Here it is.

Jesse's Story

Jesse is my first and only child. When I got pregnant I had a lot to learn. But I was 34 years old, so the maturity was certainly there and I knew I had to start having kids before it got too late! I read my week-by-week pregnancy book, I visited the baby websites daily and signed up for the emails. I was very excited to start on this new adventure in life!

My pregnancy was totally normal, in fact, I enjoyed every second of it. I think when I was pregnant, was when I was most at peace in my life. I had a blood test done early in my pregnancy to check for things like Down Syndrome and Spina-Bifida; everything came back normal. All my ultrasounds and heartbeat checks were normal. My due date approached and I had a doctor appointment on my due-date. The doctor told me my body was ready and the baby was ready; then asked if I wanted to be induced so he didn’t get too big for me to deliver. I agreed and we scheduled my induction for the following day. I was a little scared about the whole childbirth thing, but I told myself millions people give birth all the time since the beginning of time, I can do this.

My husband and I got to the hospital bright and early, labor and delivery was slow that day, and most of the rooms were empty so things got started right away. Got me hooked up to the monitors, put in the IV and soon injected me with Petocin. Contractions started and things moved along until I ended-up getting the epidural in the afternoon. Around 5:30 I was dilated enough to start pushing. Turns out he was “sunny-side up,” so pushing was hard. I finally delivered at 7:45pm. They put him on my belly, my husband cut the cord, and then they took him to examine him, clean him off a little and take his measurements. I was so exhausted after 12 hours of labor and over 2 hours pushing! I am not really sure when I heard it, but during all this heard the word “cleft” and “his palate is intact.” I honestly didn’t know what those things meant. I started getting worried. I started thinking something was terribly wrong.

They finally handed him to me and I saw his face, I instantly put the pieces together. He had a cleft lip. I kept my emotions hidden, but I looked at him --- he wasn’t the child I was expecting. Honestly, I was devastated. I told myself, “Ok, you can handle this, it’s just a little lip thing.” I spent some time with him and tried breastfeeding but had no luck. A few hours later the nurses took him away to get bathed, sent me to my room and told me he would be joining me within the hour. That hour came and went, and he hadn’t come back. Almost 2 hours later a doctor came in. He informed us our son not only had a cleft lip, but also a cleft soft palate and a heart murmur; that he was in NICU and we could see him in an hour. When I finally got to see him I held him and just cried. I was in shock that my baby was in the NICU and he wasn’t “perfect.” I don’t think I even slept that night. I cried, a lot.

The following morning was hard. I didn’t have my baby there by my side. Around 11am I was told he would be released from the NICU shortly and the hole in his heart had healed itself. They brought him in and I was finally able to feed him myself. Soon a social worker came in. She was also born with a cleft and she gave us a lot of information. My mind was more at ease after her visit because I was very uneducated about clefts. Later that day a plastic surgeon came to visit. She explained a little about clefts, her cleft team, and the surgeries involved. A weight was lifted after that and I was able to see my son’s face in a whole new light. I knew it wasn’t going to be easy, but at least I understood what we were facing.

The next day we were released and went home to start our new life as a family. I was much more relaxed. I was able to take deep breaths and I was able to finally sleep. We had some visitors in the first few days, one being my aunt. I will never forget what she told me, “God gave him to you because you could handle it.” I will NEVER forget those words. At first I wasn’t so sure I could handle it, but looking back now, she was right.

The first few months he was alive I had a lot of fears, anxiety, guilt and self consciousness. I thought people would judge me, like I did something to cause this. I felt a lot of guilt because I, really thought I did something to cause this. I still hadn’t realized how common clefts were and I felt the need to explain it when people looked at him. I felt very alone. My husband didn’t even understand what I was going through. Feeding was challenging. Since he never nursed, I chose to pump, especially since I knew he’d be having surgery and needed as many antibodies as possible, and that breast milk was best for him. I did supplement with formula as well. We did not use any special bottle. I just used a red preemie nipple with an X cut. He was eating, but it took a long time. He was burning a lot of calories, just to replenish those calories used for eating. He had little weight gain, but it wasn’t dangerously low. He was around the twenty-fifth percentile. He was small, but healthy. His weight gain was monitored by his pediatrician and cleft team. We kept a journal or his feedings so we would know how many ounces he consumed in a day so we could share the information with his doctors.

At 6 weeks old we scheduled a surgery date for when he would be 3 months. All would go as planned as long as he continued to gain. Aside from the eating issues, he had some minor breathing issues. He couldn’t sleep on his back, or he’d choke. He slept in his swing for the first few months, then found out he was able to sleep in his crib on a positioning wedge, on his side. I discovered this when I had him on the couch one day. I placed him on his side and he fell right to sleep, so I figured I’d give it a try in the crib that night. Worked wonders!

Time came for his first surgery. They would be repairing his lip, nose, and inserting ear tubes (since he had fluids in his ears since shortly after birth). Needless-to-say, I was a wreck. A lot of fear and anxiety ran through me. I felt as if I was going crazy, but when he needed me to be his advocate, I was there for him. I was strong and did everything I needed to do. It wasn’t easy watching him get taken away into surgery, but I knew it was best for him. I sat anxiously in the waiting room for the doctor to come out and tell me the surgery was a success and I could go see him, which she did after a few long hours. I was so sad to see him in pain, but it was the start of a new beginning.

Recovery Room

7 Days Post-Op

Within days my little boy was smiling again, eating well and getting back to his old happy self. At four months old he just did not seem satisfied with the formula (I stopped pumping before surgery.), so I decided to try some cereal. He loved it from the beginning and started packing on the pounds. This is what he needed, REAL food. A few weeks later he was eating pureed fruits, then vegetables. By eight months old he was not a little boy any more --- he was way up to the ninetieth percentile! He was eating all sorts of food, even table food. We did have some challenges, like sneezing, because food would get up into his nasal cavity, then of course would come out his nose which couldn’t be a pleasant experience. But he managed to get through it, I think it was because a full belly was worth it.

When it came time for his soft palate surgery at 10 months old, there was no doubt he’d be healthy enough. He was huge! Of course I had the anxiety and fear just like the first surgery, but when it came down to it, I was strong like I needed to be for him and for myself. Recovery was much harder and longer this time around, but once again we managed to get through it. After the worst part of recovery was over, things changed. He was making new sounds, he didn’t sneeze when he ate, and food didn’t come out his nose. The surgery worked! Within a few months he started sucking and by 15 months old, he could drink from a straw, which is a big accomplishment.

Cleft Soft Palate

Palate Surgery Post-Op

I now have a happy, healthy little boy who’s turning 3 in a few months and look how far we’ve come! I am proud of him and I am proud of myself. I remember my aunts words again, “God gave him to you, because you can handle it.” I CAN handle it. Instead of being ashamed of having a child with a cleft, I now share it and educate people about it, and I have put myself out-there to help people who feel the way I felt when I saw my child for the first time. I’ve turned those negative feelings into good…into helping, educating, inspiring and sharing our story.

I’ve learned bravery throughout this journey. Not so much because I wanted to, but because I NEEDED to; for myself and my son. I hope I can teach him to be a brave child, and one day a brave man. I also hope one day he can educate and inspire others too, and make a real difference in this world.

A New Year

December came and went lik a blur. But now, January 2nd, I am able to breathe and reflect on the past and look forward into the future.

December was a busy month. I worked, a lot! But it was good. We needed the extra money and it came just in time. I managed to squeeze in some time to bake too. Paul got approved for the Spinal Cord Stimulator trial, so that all happened, 2 weeks before Christmas. It went well, despite the fact that it was extremely uncomfortable for him. They placed 2 wires in his back to block pain signals. He instantly knew it was working for him. They put it in on a Friday and took it out on Monday. The perminant one will be fully internal and hopefully not uncomfortable at all.

sorry, I know this is kind of gross

first time making peanut butter blossoms

one of my favorites

I worked Christmas Eve. This is the first time I have ever worked at a job like this on Christmas Eve. Of course I have worked at office job on that day, but was released by noon or 1pm so I could go to my Christmas Eve festivities. This year I requested 1st cut and got it. I talked to some of the other girls who were coming in early too, to inquire how I can expect this to go. I was told we'd be there until the evening crew came in, so I was thinking I'd be off between 5 and 6, maybe even 7pm. I decided to have the family at my house, so I could just come home and join the party. Unfortunately I didn't arrive home until 8:40. They waited to do the gifts, which happened fast and everyone was off to their own homes. I was upset, I pretty much missed Christmas with my family. I didn't realize I was making this sacrifice when I signed up to do this job. I made good money, really good. But was it worth it? I still don't know. If I am doing this job next year, I now know what to expect and I can plan accordingly.

cousins

trying out the stockings

I love having a fireplace

Christmas morning was good. I was well rested after the hard work from the night before, Jesse slept in (I know I need to enjoy this while it lasts), Paul and I were up before him and made coffee andprepared for the day. We spent the afternoon with Paul's family and the evening with my Dad's family. I know Paul's family was upset we left early, but this year, I wanted to spend some extra time with my family, my parents were leaving before the new year.

mimosas

LeapPad, new addiction

the mess

We even got a little snow (not on Christmas though)

Jesse did well!

Now we have enetered a new year. I can only hope that this year is better than the last. Even though we had many good times, we have also had a lot of setbacks. I am thankful that we managed to keep afloat during the hard times. We came up with solutions to fix some problems, which may be better for our family anyway.

I am not big on New Years Resolutions but I am making them this year and hopefully I can stay strong and stick to them. I want to eat healthier again. I am not going to say I want to loose weight, I want to, I am also a very busy mother and it can be difficult, but I CAN try to eat better. I also want to try and be more positive. It's hard sometimes to pick yourself up when you've been knocked down. But staying down when when you have been kicked is like accepting defeat. I am still not defeated and I want to make sure I pick myself back up when this happens and face my challenges head on.