tag:blogger.com,1999:blog-56121116023465979672024-02-21T09:18:52.864-08:00Our Kind of SpecialAnonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.comBlogger162125tag:blogger.com,1999:blog-5612111602346597967.post-26854323777045752032016-07-15T06:51:00.000-07:002016-07-15T07:06:56.448-07:00hug them. squeeze them. never let them goYou hug them a little tighter, tell them you love them for the 15th time today, give them that extra kiss they ask for and when they want five more minutes in your bed...you say ok.... Why? Because you just never know if this is the last. <div>They grow up too fast, in the blink of eye they go from pooping in diapers to driving a car. And you look back when you're dropping them off a block from the school cause you're "cool" to them anymore, and you miss the times when you had the chance to squeeze them and when they actually wanted to give you kisses. </div><div>And in the wake of all the wrong in the world, you look at this being you've created and molded and watched grow and you realize that you made some mistakes, you gave him too many cookies before dinner, they saw you cry too many times, you lost your temper once or twice... But through all of that, something great happened. Your child. </div><div>And they are not perfect, by all means. They will mess up and ask for your help. Give it. Willingly. But even if they don't ask, give it. Because sometimes we as parents have to give in to give them what they need not what we want. </div><div>You never know if tomorrow is promised, and watching the news everyday surely makes you hope that it is. It is scary to think people have no regard for precious life and can just take it as they wish. So treasure yours, treasure your children and family.</div><div>Hug them a little tighter, tell them you love them for the 16th time and give them another kiss. </div><div><div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzcTgoedQdxtmmWH-cQrhbdjp_X6DB8GCtO6RytaWetJG6_9Q6OwQ0G9WIROWkw3sQfa2thgnPsinZcZfkjDkpepdZJ9NnGTxupyagyLtCf9pSJbm0yeYeyeZxh0wRhHkAJLAwWrDW0Nkg/I/photo_678757.jpg" border="0" class="bloggoimg"></div><br><br> <br></div><br><br> <br></div><br><br> Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-39016757688667740862016-07-06T07:12:00.000-07:002016-07-06T07:34:00.201-07:00pain...<div>
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Pain is a bitch. I hate it, I hide it so well though that you would never know I spent the morning crying with an ice pack on my stomach. That I swallowed back two not working pain pills.. The pain pills that are basically equivalent to Ibuprofren cause I am allergic to anything else. That I didn't sleep the night before but just laid there wishing it would stop. </div>
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You'll never know this, you'll never know any of this... Why?! Because I am a mom of two boys who need me and look to me to run their lives everyday. I have to be that person they depend on so what and how I feel doesn't matter. I hide it so I can be normal for them. </div>
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I hide it so I can be normal for everyone. I have a job, I love my job. I also have a full time college education I am pursuing and a full time wife status that I am trying to pull off yet somehow always fall short because some people just can't understand how pain changes people and how pain causes people to not show emotion because you can't stop once you start. </div>
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But the pain, people don't understand pain. Especially when you physically don't have a "reason" for it. I do have reasons for pain but no one knows that either. See I don't tell people about my reasons, I keep my surgery and my problems to myself. I strive to be normal. It's everything I want, I hate that I am not. I hate this person I am, but I can't change the pain. </div>
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So I just hide it so well you never know it exists. </div>
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Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-70658057373784218162016-07-01T07:46:00.002-07:002016-07-01T09:13:09.939-07:00Ramblings <div style="text-align: justify;">So I feel like my blog has always brought me a joy and outlet for writing and expressing my feelings.. And I've been very neglectful to it and the people who follow it when for so long this was my way of dealing with a lot of emotions I was going through mentally and physically. </div><div style="text-align: justify;">Over the past year, I've kept in so much. I've been going through so much with my health and complications from my surgery (see previous posts) that I haven't had the time or ability really to sit down and express everything. It's been a very challenging recovery, mentally, physically and emotionally and to say I am over it or it's all better is definitely not a true statement. But right now, I don't want to start back into my blog with all that has happened, I am trying to not relive or think about all that IC did to me, has done to me. So I'm not going to write about it, at least not yet. Maybe I will come back to it at some point and share more of my story but not now. </div><div style="text-align: justify;">I am coming back to writing as a means of healing and reflection and all the good it does me. I am going to venture into expanding what I write about. Sure, I'll still be writing about my children and their struggles but also some other topics. </div><div style="text-align: left;">So this is just basically me rambling about how I'm back now, and this is the first post since 2015. It's not much but it's been a while so I'm sure it will all come back eventually. </div><div style="text-align: left;"><br></div><div style="text-align: left;"><br></div><div style="text-align: left;"><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHfylRTRpvWfArv3IO_ud-YI5z-zxzuzbCi2ZjM6Jx7Dj4JRP0s26MZNWvWD6TzoCzfj8o2XrY2J0ceedHL_ZRVLtYsDuJbOdeyoK0ztw5zKc1Kus8dgVBINL4jxjVxY9EBAq3ioMLBXaT/I/photo_959897.jpg" border="0" class="bloggoimg"></div><br><br> <br></div><a href="http://s848.photobucket.com/user/endlesslybeloved/media/specialsignature_zps598081d8.png.html" target="_blank"><img alt=" photo specialsignature_zps598081d8.png" border="0" src="https://i848.photobucket.com/albums/ab42/endlesslybeloved/specialsignature_zps598081d8.png"></a>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-62029829694654376982015-01-04T10:18:00.001-08:002015-01-04T12:42:07.137-08:00I'll be ok.... soon<div dir="ltr">
There are some days I frankly feel like giving up. Like I made the worst decision in my life, what the hell was I thinking? There are some times that I am so mad at myself for not being able to be normal or quite frankly just to be able to shower and get dressed and not so worn out that I need a nap before any other tasks. </div>
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Today is a day that I feel like this. I am fighting a cold, 3 days home from a week stay in the hospital for an additional infection from my surgery and walking around with a wound vac on that literally drains my soul. I am tired, I am weak and I just want this all to be over. I want my life back. </div>
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I ran across this picture and saying this morning and it describes my world to a tee. </div>
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I'll be ok... just not today</div>
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Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-17482463927920913912015-01-02T18:41:00.001-08:002015-01-04T12:41:45.633-08:00Deeper into hell<div dir="ltr">
Not even a week into my recovery home from the hospital, to be exact it was 2 days... 2 days... and I find out that my incision is soaking through the bandages with discharge like crazy. The real issue was when I took the bandage off and it was just bright red blood. I immediately call the office and get an appointment to come in. </div>
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This is when the fun just begins... a small area of my incision right beside my belly button was trying to open and was pouring out discharge and pus. So in office my Dr had to reopen this small area. The nurse showed us how to pack this small hole with guaze twice a day. </div>
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I was also started on an antibiotic as well since the incision had become infected. We thought that was all the problem and it was solved now and the rest would be easy sailing. </div>
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Two days later as I'm taking a shower and using every last ounce of energy I had, I broke down. Looking down seeing my body in the state that it is in. Feeling how horrible I felt. Knowing this was not how it was supposed to be. I cried. And I cried. I hurt, every spot hurt. My incision was draining massively, the antibiotic made me sick. It was horrible. </div>
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So after some crying I texted my Dr. I told him what was going on and he agreed to see me the next day in office and would change my antibiotic. All I had to do was make it through one more day.</div>
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I honestly had no idea what to expect. I knew he would have to open up my incision more but the way I felt I figured I would be in the hospital to do so. But no, let's just say I am glad that my Dr has good taste in picking out his residents cause anyone else couldn't have convinced me it was ok. </div>
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But here is this resident re opening my incision as I lay on the office bed. It was horrible. It was painful, I about passed out twice. They had to lay the bed back and take my vitals and give me a break cause it was just horrible. Really there is no other way to describe it but horrible. I laid there while feeling him pull apart my skin, then pack it with guaze and cover it up. I left with a 12 inch long open incision on my belly. It felt like my insides were going to fall out. </div>
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I saw my Dr again a couple days later and he was definitely happy with his residents work on my belly. Although he was ultimately unhappy it happened to begin with. He said only 25% of the time do people get infections. I was just lucky I guess. He wanted my incision to be pretty and heal nicely so he had closed it with internal sutures and then glue on the outside. He said he could have used staples, and this wouldn't have happened but the incision wouldn't have been as pretty. I guess now it doesn't matter because it is definitely not pretty at this point. But he reassured me once it is healed he will fix it. <br />
He also ordered home nursing to come out and evaluate my wound for a wound vac which would aide and speed up the healing process. So I spent the next week waiting on the home health nurse company to come see me. They finally showed up, went through all my intake questions, talked to me about a wound vac and supposedly placed an order for one. I say "supposedly" because after several calls and finally a letter in hand given to the nurse, I never saw the wound vac. </div>
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Luckily my mom came over twice a day to repack my incision, help me shower and take care of my kids and all the other daily activities. I still felt like my insides were falling out. It hurt to move, it hurt to walk, I slept on the couch cause I couldn't lay down. I had my drain tube still in which drained my kidneys and new bladder. I honestly felt like I had made the worst decision of my life and I knew it wasn't supposed to be like this. I broke down and cried too many times to count. It wasn't supposed to be this way. </div>
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That's all I could fatham. It wasn't supposed to be like this. I was supposed to be halfway through recovery. Feeling good, using my new bladder. Enjoying Christmas with my family. But I wasnt. I was confined to the couch in my living room. Only getting up to empty my drain bag. I had no energy, no will, no want to do anything else. </div>
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I was very depressed although I tried not to show it to my kids. But I missed them. I missed everything.</div>
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To be continued...</div>
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Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com3tag:blogger.com,1999:blog-5612111602346597967.post-12123602624114676292015-01-01T18:26:00.001-08:002015-01-04T12:41:19.684-08:00The journey to hell...<div dir="ltr">
This is going to be my tale along this bumpy road of having my bladder removed due to Interstitial Cystitis. This is a long story, a lot of setbacks, a re-admission, and lots of pain. This will be multiple installments as it is a continuous journey.</div>
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It's my journey to hell... </div>
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But it's not a bad journey cause in the end I fight my way back. </div>
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So let's start... Dec 4th was my check in day at the hospital. All was good, I was calm.. almost in a surreal way. Like I knew I was about to face the most complex and scary thing of my life. I was undergoing a 10 hour surgery and would have a lengthy recovery. </div>
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But still, it was surreal. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisB33pxxObhO14Dd9qIy9415msa2-Z8jxJGhCSRAfp1deEb7oAYwqOM9kHB0R5R-YYti_XHzqgjTHCNlNzWpry81LT_LAhyZFY8tvAmDZOBdWBIpMttT0tdvu79Buj7H6jGdaXpY5exYPy/s640/IMG_20141204_115551.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisB33pxxObhO14Dd9qIy9415msa2-Z8jxJGhCSRAfp1deEb7oAYwqOM9kHB0R5R-YYti_XHzqgjTHCNlNzWpry81LT_LAhyZFY8tvAmDZOBdWBIpMttT0tdvu79Buj7H6jGdaXpY5exYPy/s640/IMG_20141204_115551.jpg" height="320" width="320" /></a>I was taken to my room, I remember exactly 9th floor of the cancer center, room 935. <br />
Honestly it was kinda a day of nothing when I got there. They didn't have orders for me yet so I really just hung out in my clothes watching tv for a couple of hours til things got started. First things of course, the overly sized green gown that could have housed 3 of me comfortably. The IV that would come to be a pain in my ass when my veins blow every 12 hours. Fluids... hydrate hydrate hydrate<br />
And then.... the dreaded clean out</div>
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Why.. because during this surgery, they remove a couple feet of your intestines and conform them into a new bladder or "Indiana pouch" that rests on the inside of your abdominal wall. So your intestines need to be clean. And this entails drinking a GALLON of golytely which is fancy for miralax. </div>
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Dec 5.</div>
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They took me down to surgery pre op at 6 am. It was quite busy with residents, anesthesiologists, and nurses. It all was kinda a blur. I talked to so many people and I signed my life away several times. I listened to all the what ifs and risks and knew that no matter what the chance of a pain free IC life outweighed all of that. </div>
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I kissed my loved ones and they walked away as the anesthesiologist began to do my epidural. After the meds I really don't remember much besides being wheeled to the operating room. I was completely calm. </div>
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I woke up in recovery, epidural lasting so not much pain, although they had me on a morphine pain pump and the epidural pump of lidocaine. The surgery lasted 10 long hours. I remember looking down though and seeing the bandages on my stomach. The 3 drains hanging from all sides and all the wires and cords hooked up to me. It wasn't long in recovery til I got to get back in my room. </div>
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They tell you from the start that you have to do three things to go home... eat, have a BM, and be on oral pain meds. And believe me they start pumping you full of colace and miralax as soon as you're out of surgery. I was doing good with 1 and 2 out of the list but pain was an issue when they switched the pain pumps to as needed IV meds.</div>
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I remember laying in the bed crying in pain. I can't lie, it was painful. I had an incision from just below my chest around my belly button down to pubic bone. <br />
But honestly as soon as we got the pain under control I was ok. I actually went home 4 days after my surgery.</div>
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And seriously the ride home was torture! Every bump or crack in the road, I felt 10 times worse. I was drained and weak. I was ready to be home.</div>
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To be continued. ..</div>
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<p dir="ltr">Quite frankly that is the best statement I've heard in a while and I believe in every word. With so much talk and fuss lately about gay marriage and religion and what's right and wrong... I felt I would share my views on this. </p>
<p dir="ltr">You can hate me or love me for my views and opinions, they are mine and I am in no way trying to persuade or push them upon anyone. </p>
<p dir="ltr">Love is love and you can't choose who you fall in love with. Are we so jealous of what other people have in their love that we must make a choice to prove them wrong? Why should it matter if I love someone who is not who you would choose to love? </p>
<p dir="ltr">I don't believe people choose to be a certain way over another or choose to love one sex over the other sex or choose to love both.. if we had the choice why would we choose the harder path, the path that causes more pain and turmoil? Isn't it our natural instinct as humans to choose the path with least resistance?!</p>
<p dir="ltr">There is enough pain in this world, there are plenty of problems and situations that need our attention. Gay Marriage IS NOT one of them! I fully support marriage of all people, love for all people and equal rights for ALL people. </p>
<p dir="ltr">If we can choose to be happy with ourselves and spread that happiness to others then why not choose to do so? It costs nothing but gives so much in return. Love knows no boundaries, no sexes, no colors, no religions.. love only knows love. </p>
<p dir="ltr">And who I love might be different from who you love but again... what does that matter to you?! <br><br></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu0bo-MgjuqUsLBgXaznL5_9rTcMb0rw1CoHe95yv0t5LhpZVGDUQyEbQzjHNzlVLJqbeCWa72lBS40QIcMIXnx0qKl_SkRrTIRLsesCVS48sE1KwGPsOFZys3l1UfmpLeZyWal22zSmPM/s1600/IMG_1602982484311228.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu0bo-MgjuqUsLBgXaznL5_9rTcMb0rw1CoHe95yv0t5LhpZVGDUQyEbQzjHNzlVLJqbeCWa72lBS40QIcMIXnx0qKl_SkRrTIRLsesCVS48sE1KwGPsOFZys3l1UfmpLeZyWal22zSmPM/s640/IMG_1602982484311228.jpeg"> </a> </div>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-57730988551554962912014-11-22T13:06:00.001-08:002014-11-22T13:15:01.420-08:0012 days...<p dir="ltr">It is down to 12 days before my surgery... luckily lately I have been extremely busy trying to get all my Christmas shopping, thanksgiving shopping and cooking done, schoolwork and all holiday related activities done; so I have had very little time to sit and think about the surgery. <br>
I know if I do, I get a flood of emotions and worries over everything. I don't tell many people how I actually feel about the surgery, how extremely terrifying this all is. The thoughts of recovery and hopes that it will all go as planned. <br>
The chances of setbacks and ending back up in the hospital are high. The surgery is very complex and so many things could go wrong. <br>
I don't even know where to begin on explaining to my children about the surgery or that Mommy will be gone for 2 weeks. I am their main source of dependency, and the calm in their busy lives. <br>
This is going to be hard on all of us, and I hate that the surgery will be done 45 minutes from my house and kids. And in the same hospital where I spent so many endless days and nights with Zach when he was so sick. So many memories are in those hospital walls and engrained in my mind surrounding those couple of years. </p>
<p dir="ltr">Can't back out now, I am so within reach of this pain free better life with no IC.<br>
12 days... <br>
12 days...<br>
12 days...<br>
I can do it. <br>
</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5QXE1yVUf8x48UByvH-fMSdvC0LGxi5Cl5rW46fkIMnakZwNuF-JgYpdlC3goPLf6t2kfBz_EaUYkqZS_4xn6INs59jXEooWgM_wnbLMbPbrzb-_Kv8jtax17bhyphenhyphenJmPMC1DGfftLANl38/s1600/d72dc1403551eda28ace1249de504dec.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5QXE1yVUf8x48UByvH-fMSdvC0LGxi5Cl5rW46fkIMnakZwNuF-JgYpdlC3goPLf6t2kfBz_EaUYkqZS_4xn6INs59jXEooWgM_wnbLMbPbrzb-_Kv8jtax17bhyphenhyphenJmPMC1DGfftLANl38/s640/d72dc1403551eda28ace1249de504dec.jpg"> </a> </div>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-22367122564725536832014-11-12T12:40:00.001-08:002014-11-22T13:30:14.258-08:00I am IC<p dir="ltr">I am the poster child to Interstitial Cystitis... <br>
I was diagnosed in March with a 400 ml bladder postmarked by all the typical IC inflammation. (For perspective a normal persons bladder is usually 1200-1500 ml)</p>
<p dir="ltr">My everyday consists of pain, painful bladder that feels like a constant throbbing with knife like sharp pains along with severe lower back and having to pee every 30 minutes to an hour to help relieve some pain only to bring a different type of spasming pain. My bladder lining is gone and so therefore all urine that goes into my bladder basically is like pouring acid on an open wound. The food I eat affects it, drinks affect it and stress.... stress is a HUGE factor but how do you not be stressed when you're in so much pain. </p>
<p dir="ltr">Since March I have tried every medication and treatment out there to help control it, even ones that put my health at more risk. I've been immune suppressing medications, participated in painful clinical trials and had more allergic reactions to medications just with the hopes that one would help. The bottom line is that it has gotten to a severe state fast and at this point, there is no treatment or medicine that will make a difference.  <br>
The only thing that will take away the pain is having my bladder removed. To make it all worse, I am allergic to all narcotics so I get ZERO relief from pain....EVER! So I've made the decision to have my bladder removed.</p>
<p dir="ltr">This isn't an easy decision, so please don't tell me it's not a big deal or act like my pain is minimal. IC pain is comparable to END STAGE RENAL FAILURE PAIN AND END STAGE CANCER PAIN. So it is a big deal. And not being able to take pain relief medications is torture. </p>
<p dir="ltr">In one hand I am so utterly happy that I have this option. I have a day that will result in a better pain-free IC free life. <br>
But in the other hand, I am scared shitless. This is a complex surgery that will leave it's mark. Not only do I endure the 6-10 hour, the 2 weeks inpatient and up to 6 month recovery time to get to my life. But I also deal with the self image and emotional toll. I will have my entire bladder removed, and several feet of my intestines will be made into a new bladder. It's called an Indiana pouch, a fake new bladder that will work better, hold more and cause NO pain. </p>
<p dir="ltr">I know this will be the hardest thing I do to myself. And while it was a decision I jumped at when given the chance, it is a decision that will change everything about me. <br>
I am very lucky to see one of the best IC doctors in the World and I trust him and the decisions he has made for my heath. </p>
<p dir="ltr">He is an amazing and compassionate doctor who actually cares about his patients and their quality of life. Cause let's face it... that's what I'm choosing. I am choosing quality of life over everything else. I want to do the things I used to and want to in my future. </p>
<p dir="ltr">Some people tell me I have strength and courage to endure and do this, I don't know about that. I am scared and nervous and putting my life in the hands of someone else. Kissing my kids goodbye and saying I love you will be the hardest thing that morning. It's a long surgery, a very complex surgery and it has risks. That scares me the most. </p>
<p dir="ltr">But I'm going to act strong and continue to act like everything is normal for the next two weeks until my surgery date. I have gotten really good at FAKING being normal and strong so this should be no big deal, right?! </p>
<p dir="ltr">Luckily I am very thankful for a small handful of friends who help me through and listen to my struggles and offer encouragement and love. It's a hard thing for most people to understand and deal with, and I get that, but I don't need the ones who don't understand. </p>
<p dir="ltr">So on December 5th, have faith in my Dr and my surgery and the outcome of my new life. <br><br></p>
<p dir="ltr"> <br>
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<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjTlGFJciC8mSgjSRigsQbgtpDVCrGKXb0L7A4gDl6gaHn5zX4h-Crd28UwXKpv2Trxy9FwXjfzOBo9NYKUwNDP2trAS08FRghReu-o-FrBNuMmEqCAchrZ6jq0HBamzUkww43bejQTpWY/s1600/47c8fe72afffe1abfbb7260bac34f612.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjTlGFJciC8mSgjSRigsQbgtpDVCrGKXb0L7A4gDl6gaHn5zX4h-Crd28UwXKpv2Trxy9FwXjfzOBo9NYKUwNDP2trAS08FRghReu-o-FrBNuMmEqCAchrZ6jq0HBamzUkww43bejQTpWY/s640/47c8fe72afffe1abfbb7260bac34f612.jpg"> </a> </div>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com3tag:blogger.com,1999:blog-5612111602346597967.post-88823173492197122032014-09-17T19:16:00.001-07:002014-11-17T16:51:39.710-08:00Walk for Wishes 2014<br />
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<span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">The Make-a-Wish
organization is very important to our family. Zach was diagnosed with a
life-threatening medical condition in 2010 and received his wish to go to
Disney World in October 2012. Our family had a wonderful time in Disney, it was
a week without doctor visits, hospital trips, anxiety over what’s coming next.
It was awesome, our family needed the break from the routine of having a sick
child. <br style="mso-special-character: line-break;" />
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<span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">And like our family,
there are lots of other families that need that break. <o:p></o:p></span></span></div>
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<span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">Make-a-Wish grants thousands
of wishes each year, each wish costs about $6000 to grant and Make-a-Wish is a
completely non-profit charity. So our family dedicates a team each year to help
raise money for Make-a-Wish by walking in their Walk for Wishes. <o:p></o:p></span></span></div>
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<span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br /><span style="font-family: Calibri;">
Walk for Wishes is a walk through Tanglewood, through the </span></span><span style="font-family: Calibri;"><span style="color: #00b050; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Festival</span><span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"> </span><span style="color: red; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">of</span><span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"> </span><span style="color: #00b050; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Lights</span><span style="color: #666666; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"> before it opens for the
public. On November 15, hundreds of teams will walk and there will be over 3,000
people in attendance. Most teams are wish families and walk to raise money
because we know the tremendous power behind the wishes that our children have received.
</span><span style="color: #666666;"><o:p></o:p></span></span></div>
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<span style="color: #666666;"><span style="font-family: Calibri;">This
is how we give back to an awesome organization that put a smile on Zach's face
like it does to thousands of children with life threatening medical conditions.
<br />
<br />
Although Zach has had a lot of medical problems and has spent more time in the
hospital in his 5 years than most people do in their lifetimes he is doing
better. There were times he faced infection, sepsis and even a transplant
evaluation. He has been through feeding tubes, central lines, blood
transfusions, IV nutrition, too many tests and surgeries to count or name and
too many days away from just being a kid. <br />
Make-a-Wish put a smile on his face when they asked what he wished for.
"Mickey Mouse house" was his exact words, he loved Mickey Mouse and
every time he watched a movie and the castle appeared in the previews, his face
lit up. So when Make-a-Wish told him he was going to Disney World he was ecstatic!
<o:p></o:p></span></span></div>
<span style="color: #666666;"><br /><span style="font-family: Calibri;">
To people who do not have special needs children or do not know what it is like
to sit by your Childs’ hospital bed day and night and just wish they could come
home, you might not understand the value of Make-a-Wish. <o:p></o:p></span></span><br />
<span style="color: #666666;"><br /><span style="font-family: Calibri;">
But to us… and to all the other families that have been touched by them, it is
unexplainable. To get a week of no tests, no appointments, no hospitals. Just
your child being a kid, and playing and laughing; it will be forever in our
hearts what it was like for that week. <br />
<br />
And some kids are not like Zach, some kids do not recover or get better or have
remission. Knowing so many families that have lost their children to these life
threatening medical conditions, makes me cherish Make-a-Wish so much more. Even
those some of the children are no longer with us, their families remember the
joy and time they got to spend seeing amazement in the eyes of their little
ones. <br />
<br />
So to ensure that every child going through the diagnosis of having a life
threatening condition is able to receive a wish, we give back.<br />
<br />
Team </span></span><span style="font-family: Calibri;"><span style="color: red;">Superman</span><span style="color: #666666;">
in honor of Zach will be there showing our support of this amazing
organization.<o:p></o:p></span></span><br />
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<span style="color: #666666;"><span style="font-family: Calibri;">Please
join our team and help us provide a wish for another child <o:p></o:p></span></span></div>
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<span style="color: #666666;"><a href="http://www.walkforwishestriad.kintera.org/teamsuperman"><span style="color: #0563c1; font-family: Calibri;">www.walkforwishestriad.kintera.org/teamsuperman</span></a><o:p></o:p></span></div>
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<span style="color: #666666;"><span style="font-family: Calibri;">For
more information or information on corporate sponshorship opportunities contact me<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;">
(Walk for Wishes 2013)<o:p></o:p></span><br />
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<br />Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-48749423459289378152014-09-08T20:09:00.002-07:002014-09-08T20:11:35.655-07:00Empty nest...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><em><strong>Kindergarten 2014</strong></em></td></tr>
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It happened... the first day of school (insert crying here) ok well maybe not the first day or week....haha but eventually yes, I did cry. </div>
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As much as I wanted the quiet house, it is a lonliness that I wasn't expecting. To think that my baby boy is off to kindergarten is heartbreaking.</div>
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Did I pack his meds? does his teacher know what to do? does he know what to do? will he eat lunch? will he miss me? what if he does miss me? will they call me? </div>
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How do you control all the emotions of putting your faith that your child, who at one put in his life was considered failure to thrive, medically fragile and probably wouldn't live to the age of 5, with a stranger for 8 hours a day???</div>
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But, I did.... and yes, the teacher has spoken to me almost everyday about him but the transition is going better than I expected. I still cannot believe he is in kindergarten. My baby boy is growing up...please stop growing baby Zach :(</div>
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Everyday seems to get easier though, he likes school and he is making friends. He says he has 2 girlfriends and 1 boyfriend so far.. oh the innocence of a sweet 5 year old. I wish I could keep him this innocent forever but eventually society will get to him and he will learn the importance of his mix of friends. </div>
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With Zach's health issues still at hand and with several relapses over the past month, he does have special accommodations in school. He cant play in recess or in PE until It gets cooler weather outside. But he is okay with that most days, the first week was a bummer when everyday he would come home telling me he couldn't play outside. Now he doesn't mind too much, he gets to play with the Ipad and is pretty content with that. <br />
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I am guessing this whole empty nest feeling will eventually surpass, but oh how I miss the days of snuggling on the couch with my baby boy all day. </div>
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<br />Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-71820285874942831672014-07-02T09:28:00.001-07:002014-07-02T09:28:41.535-07:00Speechless<p dir="ltr">Honestly I just don't have the words right now to put into a post... so many things have happened and changed that I am speechless. </p>
<p dir="ltr">I'm trying to wrap my head around all the new things; my illness, my kids, the loss and gains of friends... still trying to cope everyday with all the changes. I am tired and overwhelmed and want to write but my head won't stop spinning long enough to get my thoughts out on paper. <br>
Right now all I can think about is everything but what I need to. <br>
I'll leave you with this...</p>
<p dir="ltr">The lessons we need most always come with the most <u>pain</u></p>
Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-74244148673659643212014-06-05T09:00:00.001-07:002014-06-05T09:03:51.412-07:00Oh the places you will go<p dir="ltr">I am just in awe that I just sat through my son's first school awards program. Bittersweet moment of my baby is graduating kindergarten and look how far he has come. <br>
A year ago we started this journey with fear and anticipation of exactly what this year would hold for him. It has proven to be hard, yet well worth the journey. He has amazed me with his abilities.  He has learned more about who he is and what he can do in the past 9 months. He has made his first steps in becoming someone great. Someone who is unstoppable and courageous.  <br>
All the mornings that we spent fighting clothes, school and fears are now worth it. All the progress and all the tears. Not to say this year didn't come with setbacks and disappointments, it did but through all of them, he overcame. He did it. <br>
My son who fights more with himself than anyone I've seen. Who struggles with anxiety and depression worse than most adults. My son finished his kindergarten year. I couldn't be more proud of him. <br>
And even though he won't show it he is proud of himself. <br></p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrNOal-y27fmcy8plvJyCG_LYRYQZN9oB1JXvxERDe0x98c55pgGC79zKZXS0ar1rtW2P_yK612S215vH2PxAM6iy_nzVHJEoaN3NJ8WzE7pe1nqUX7bfA7QsbRYMBmaUOWM_h_KAzH_N4/s1600/images.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrNOal-y27fmcy8plvJyCG_LYRYQZN9oB1JXvxERDe0x98c55pgGC79zKZXS0ar1rtW2P_yK612S215vH2PxAM6iy_nzVHJEoaN3NJ8WzE7pe1nqUX7bfA7QsbRYMBmaUOWM_h_KAzH_N4/s640/images.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpkQkBrfc4kiZ_lzeO3OHZgbveFeG2iBjrPV_kk9CETltR_3f1UIVNsCLheeKiwJ1PY0yHhibCXT301uiDXGYRCB2IsL2wKwrcqNiHzFuifY9LmodRbk0142_4YwegiM3SwlJcym3OIs7T/s1600/1399233182791.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpkQkBrfc4kiZ_lzeO3OHZgbveFeG2iBjrPV_kk9CETltR_3f1UIVNsCLheeKiwJ1PY0yHhibCXT301uiDXGYRCB2IsL2wKwrcqNiHzFuifY9LmodRbk0142_4YwegiM3SwlJcym3OIs7T/s640/1399233182791.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSh3QwiMzPd7AFhcu-NHvZM3auhDssmkQj0a74FAtU-AtX0tJ6gnCZOiF_QYtABTziNqzl6jvOU94__ZFfby4qx_jTTd0vucMhZBRb9nYQuVd70KzV4097i2mncn6b4YSX47fA7IXQu3EH/s1600/20140513_165830.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSh3QwiMzPd7AFhcu-NHvZM3auhDssmkQj0a74FAtU-AtX0tJ6gnCZOiF_QYtABTziNqzl6jvOU94__ZFfby4qx_jTTd0vucMhZBRb9nYQuVd70KzV4097i2mncn6b4YSX47fA7IXQu3EH/s640/20140513_165830.jpg"> </a> </div>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com2tag:blogger.com,1999:blog-5612111602346597967.post-91077241214873294712014-05-17T17:11:00.001-07:002014-07-02T09:42:24.695-07:00Minecraft overload party<div class="separator" style="clear: both; text-align: center;">This is a long overdue post about Lucas' 7th birthday party.</div><div class="separator" style="clear: both; text-align: center;"><br></div><div class="separator" style="clear: both; text-align: center;"><br></div><div class="separator" style="clear: both; text-align: center;"> Party planning has always been a favorite thing to do and having kids makes it awesome. Even though my kids don't have a lot of friends so their parties are usually small, I still try to make them the best party they could wish for. </div><div class="separator" style="clear: both; text-align: center;">This year, Lucas was all about Minecraft. So his party was so much fun planning and doing. Pretty much everything was homemade including his creeper cake... which took a long time to get right. </div><div class="separator" style="clear: both; text-align: center;">But it was all worth it, he loved it and the few friends he had come over loved it as well!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6wqj9eudH153mMZArJhd63FigGlHvUi4v4Cvq3zr3qu5jower5dfdXIdZ1vxrjwDRCXUOcxM-zXBN6oPLeoHlOJjH3i1c8NsmaSqhZQTfkzmyNip0F2PxaKIGkCZQqBQV_pkXcnQ2d2R/s1600/20140426_212835.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6wqj9eudH153mMZArJhd63FigGlHvUi4v4Cvq3zr3qu5jower5dfdXIdZ1vxrjwDRCXUOcxM-zXBN6oPLeoHlOJjH3i1c8NsmaSqhZQTfkzmyNip0F2PxaKIGkCZQqBQV_pkXcnQ2d2R/s640/20140426_212835.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1DtI5-UFl8jDCZBwTA-jxZn9UwbbAmHPvNo8ZzlRaPMXP0mUU3D_eg856wyTOFX-bKDd-92GwsUuHYIo163-I9ghUt1oAoi03ZvW0JhODGh0EDBCVWIh1fnFXkXtwwUIQCWt2HizmxR1-/s1600/20140427_105132.jpg" imageanchor="1" style="margin-left: 1em; 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But it's hard, loving them is hard sometimes, not losing it when they seem to push every button of my existence to the limit, not running away from it all, not thinking the what ifs...<br>
I'm not going to lie <br>
Being a mom is the hardest most selfless thing I do<br>
My needs, my wants, my dreams and wishes and thoughts and sometimes my happiness.. All gets put aside for them. <br>
If I didn't have them my life would be different, I wouldn't be who I am today.  I wouldn't have gone through the toughest times in my life.  I wouldn't have spent countless nights crying myself to sleep, the thoughts of losing them wouldn't flood my mind. <br>
I could have done without losing a child to a miscarriage, I could have been fine without having a child so close to dying so many times and spending weeks and months by his hospital bed. I could have taken a different route in my pursuit of happiness and love. <br>
All the fighting, the tears I've shed, the meetings, the beginnings, the ends, triumphs and losses.<br>
I never imagined I would have to fight so hard for make my child's life easier. Never even thought about IEPs, 504s, transplants, feeding tubes, TPN, central lines, sepsis until I was a mom. <br>
And not just any mom<br>
A mom who has gone through hell and made it back to keep on fighting. <br>
A mom who has seen the loss and had the loss and been so close to loosing. <br>
My children are my world. All I do, all I think, all I imagine is for them. <br>
I make sacrifices for them. <br>
Motherhood isn't for all, and frankly it isn't what I thought it was. It isn't what I imagined when I was a little girl dreaming of my perfect life. It's not what I recommend for everyone. It is hard!!<br>
Being a mom will be the hardest job you will ever have. Being a mom to special needs children will be even harder and will push you even more to the brink of giving up. <br>
But I wouldn't trade them for anyone else. I love them. I love the person they have made me. They have opened my eyes, my ears and my heart to far greater love than I could have ever known without them. <br>
And I will be forever grateful and humbled to be their mom. <br>
So however you see it, however you see me, however you see them. <br>
It doesn't matter.<br>
What matters is how they see me<br>
And they see me as their mom.<br>
The one who wipes away their tears, kisses their hurts, hugs them when they are sad. The one who will never stop fighting for the best for them. <br>
Their mom. That is who I am. That is what defines me. Them. My children. My heart, my soul and my love. </p>
Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-16873328088306176292014-05-03T21:01:00.001-07:002014-05-03T21:03:42.410-07:00The reasons I started this blog<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwJIIG7RnGqwslX6KjzIssFZcvTHbXqZAq6oDXM-DCyALf9HFQyUw7O3NDRiFwI6ExgSmcsBYo3xFr2R-U6gFaXdXil5mzMLJ-vq_Hz4UJJmMAnV2eiZ8BYTK_qz07T9P2Z7F7IjNRK78s/s1600/IMG_288729794772974.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwJIIG7RnGqwslX6KjzIssFZcvTHbXqZAq6oDXM-DCyALf9HFQyUw7O3NDRiFwI6ExgSmcsBYo3xFr2R-U6gFaXdXil5mzMLJ-vq_Hz4UJJmMAnV2eiZ8BYTK_qz07T9P2Z7F7IjNRK78s/s640/IMG_288729794772974.jpeg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv-3LRqjpUQ887qXIsdhsr0DrZY37h2CG7rzZDO9bzhxHqBPPTnc1OdURi-e57T5nTJtsDa-QGzPFkRniuth85BmZi_1BS-AjgKdIkuRHzJf8ygIgJuGKFZq3r_AS1yxNhsHhhTuljA1F4/s1600/IMG_288670801995080.jpeg" imageanchor="1" style="margin-left: 1em; 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get along with the voices inside of my head,<br>
You're trying to save me <br>
Stop wasting your breath<br>
You think I'm crazy, <br>
And that's not fair"</p>
<p dir="ltr">This song has a strong feeling in my heart for my son. To be only seven he already battles depression and anxiety and most days he hates himself. His inner struggles are bad. He says he is bad, he hates his brain, he hates that everything that he does he can't control and it frustrates him. <br>
This is his life. The meltdowns that look that like a two year olds temper tantrum, the difference is... it's not for attention, he can't control them and you can't stop them. He struggles to make sense of his world, his self. He feels he let's people down and he feels so different from everyone else. He thinks no one likes him. <br>
Today was hard. <br>
Today he broke his brothers heart.  <br>
Today he scared me more than I thought I could be. <br>
I am not going to explain everything that happened because we need to work through this first. We need expert advice from his trusted and loved psychologist.  But he needs prayers for comfort and peace. He needs guidance and assurance that everything will be ok in his world. <br>
That's all I ask. He's only seven and shouldn't have to feel this way about himself. My heart needs some comfort. My mommy heart is breaking for my sweet boy.  I can't explain how hard it is to watch him struggle with himself. I hate to watch him cry and tell me he doesn't want to be here. That he's a bad boy and no one loves him. <br>
I feel helpless and sad. I want to help him, I want to make him see that he is wonderful and perfect. I couldn't love him anymore than I do now no mater what. No matter who he is or was or is going to be. I just want him to understand this. I need him to understand that he is loved and he is needed. </p>
Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-78951652953406609722014-04-29T07:11:00.001-07:002014-04-29T07:22:05.970-07:00I sure do love her <div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This is an amazing story and tribute to the most beautiful little girl I know and love. Even though I have never met her, my feelings of love and hope grow stronger the more I learn about her. This amazing little girl is a blessing to all that she meets and is so special. Through a very special group called I Run 4, I got to be matched with her and from that moment, she has given me strength and courage through all that I do. </span></div>
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<span style="color: #3e454c; font-family: Arial;"><span style="background-color: #f7f7f7; font-size: 15px; line-height: 17.25px; white-space: pre-wrap;">Her mom did an amazing job sharing her story with us</span></span></div>
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<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br></span></div>
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<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br></span></div>
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<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br></span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Our daughter Arianna Ferrari was born on 8/9/2013. She was diagnosed with Down</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Syndrome in utero at 20 weeks. I had declined any elective testing early in my pregnancy. When my husband and I decided to try for a baby we made a decision that we both believed was so important and special that no matter what happened (and realizing typical baby is never ever a guarantee) having an abortion was not an option. I had decided to have our anatomy ultrasound so we could find out the gender</span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. At this exam our specialist found Arianna had an echogenic foci (white spot which is a calcium deposit) on her heart. This causes no issues and goes away in utero on its own but it is a market for Down Syndrome. The doctor was not concerned as everything else looked great. We decided to take the MaterniT21 test just to rule out Down Syndrome. We had advised our parents and were trying to stay positive and hopeful. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">When the test results came back positive we were all floored, even the doctor. I found out while and work, my co-workers were very supportive and understanding and let me go home for the day. I was scared to tell my husband, I did not want to upset him. I was dealing with the news all on my own, making phone call after phone call to our family and friends and with each phone call my emotions got better as everyone was so supportive. We have amazing family and friends, in the end we were happy to be given the chance to bring a baby into this world (as so many people these days can not). Breaking the news to my husband was the hardest. By the time I told him I had already accepted the situation and was able to be there for him. It was hard to say the least. After going through a lot of emotions and questions the pregnancy went on an all was well. The day we had Arianna the first thing we did was check her palm for the simian crease which she did have and confirmed to us at the moment that it was really true.</span></div>
<b id="docs-internal-guid-48a09677-adc9-19bb-2584-c380b49df55e" style="font-weight: normal;"><br></b>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">From that day on our lives changed forever. Arianna was healthy and was such an active little newborn. Most days I hardly thought about Down Syndrome as I was consumed with being a first time mom. She loved tummy time and was holding her up very early as well as rolling over from tummy to back at 6 weeks old! Although as the months passed and she reached 5 months old her progress started slowing down. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">People with Down Syndrome have decreased muscle tone which makes it harder for them to roll, crawl, walk, talk, ect. Arianna now goes to Physical Therapy once a week and has an Early Start teacher come to our home once a week as well as extra doctor appointments and check ups. I am responsible for practicing Arianna's physical therapy for approximately 2 hours a day, everyday. Arianna works extremely hard and there are days I wish we could just cuddle and not "have" to do certain activities. I try to make sure we relax on weekends and just enjoy being a family! She has already taught us patience and persistence. We recently just got her drinking from a straw cup which took 1.5 months. Just when I want to give up I know I can't because she will get it and just needs me to keep pushing and be patient. </span></div>
<div dir="ltr" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Our lives have so much more meaning with Arianna in it. I am excited for our future, scared for issues we will face and shitty people who will comment, but in the end we just want to make Arianna happy and give her everything she could possibly want in this life. Arianna has the ability to defy expectations and we know she will actually enjoy life and the little things us adults are too consumed with work & stress to even notice.</span></div>
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<span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: italic; vertical-align: baseline; white-space: pre-wrap;"> I am so jealous & proud she gets to have this amazing life.</span></div><div style="text-align: center;"><span style="background-color: #f7f7f7; color: #3e454c; font-family: Arial; font-size: 15px; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">written by Karin Ferrari</span></div>
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Arianna is a precious, beautiful, perfect little girl and she teaches us that Down Syndrome does not define who she is, she is a blessing and she teaches us love <3 p=""><br>
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Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-9552195490553006792014-04-22T16:24:00.001-07:002014-04-22T16:24:14.318-07:00What? When did this happen??<p dir="ltr">Yeah I've been asking myself this question for years... When did my little 4 lb miracle baby get so big? <br>
He is growing up on me and I am so not prepared for this. Why why why can he just not stay little?</p>
<p dir="ltr">Lucas,<br>
I can so easily remember finding out I was pregnant with you, after a year of fertility drugs, pills, shots and after a round of artificial insemination you were made. <br>
But you made sure that your appearance was going to be just as dramatic as your conception.. trying to strangle yourself in the womb. Such a lucky day when the doctors found out. So lucky we found out in time. If not, you would not be here. <br>
From rushing to the hospital after the doctors telling me you weren't moving to the ride down to the operating room for my emergency c - section. <br>
Life is a roller coaster and you made sure I was in the front row. <br>
Emotions I hadn't prepared for as you came into this world eight weeks too soon. Seeing you with wires and tubes and lights and not being able to hold you. To leaving you at the hospital in the care of nurses and doctors for 4 long weeks. <br>
You are certainly a miracle baby. <br>
And now my soon to be 7 year old. Your struggles are deep and I only wish I could see the world the way you do. I wish I could feel the things you do, how you do. To help you interpret and survive in this world. <br>
The days I feel like giving up, I think of you. It would be easy for you to give up, the struggles you face everyday head on and keep going. You teach me so much. <br>
You will always be my world. I will stop at nothing to make this world easier for you, to help you with your struggles. I will be your strength when you can't stand, your voice when you can't muster the words and your shadow when you get the confidence. </p>
Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-62125904498309140162014-04-15T11:56:00.001-07:002014-04-15T11:56:14.789-07:00Suffering<p dir=ltr>Almost a month ago I was diagnosed with a painful auto immune disorder. I've actually been dealing with the effects of it for over a year and maybe longer but finally saw the right doctor and got diagnosed. <br>
So I have Interstitial Cystitis, a painful bladder and pelvic disorder. But honestly it affects so much more than your bladder. It causes inflammation in your bladder walls and surrounding muscles, causing pelvic floor dysfunction. To say that is painful, is an understatement. It hurts everyday, all day, with no relief. I have to urinate almost every 30 minutes and can't empty my bladder so it always feel like I have to go even if I just went. And my bladder spasms causing me to not be able to go because my body fears the pain. <br>
I have been through so many medications over the past month. I have tried bladder instillations, pain meds and now physical therapy. I am taking more meds than I have ever taken. I just turned 30 this past week and yet I feel like a 70 year old. It sucks to be quite honest. To try to function like a normal human being is unbearable some days, but I have to and it takes all I have to do it. <br>
I am also coming to terms with having a chronic auto immune disorder that drastically changes my life. I have to follow a very strict IC diet, that restricts me from eating and drinking almost everything. And I constantly get asked how I am feeling.. <br>
I really don't want to talk about it, I hurt. It feels like I am being sat on by 400 lb person while they are stabbing a hot knife in my lower abdomen and twisting it over and over and over again. Do you get the picture?? If you have ever had an UTI, think about those symptoms 24/7 and 10 x worse. Don't tell me you understand cause you don't. And don't ask me if I am going to do something today other than lay on the couch with a heating pad on me. There is no way to explain to you the emotions and pain I am feeling. <br>
I try not to whine and complain and honestly most days you will never know just how bad I feel. That's the mommy in me I suppose. I will put my needs aside because I have to. But everyday is tough, everyday sucks and hurts. <br>
So now I'm living with IC, actually no, I am suffering with IC. </p>
Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com4tag:blogger.com,1999:blog-5612111602346597967.post-81724540114110016832014-03-28T07:13:00.002-07:002014-03-28T07:13:48.379-07:00Our Journey to The Piedmont SchoolFor us, choosing The Piedmont School was no contest, we knew that public school just wasn't an option for our son.<br />
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We tried it, Lucas started school when he was 2 1/2 years old, and went through the 2's and 3's class at his local church preschool before we really saw any differences that stood out. During his first actual pre-kindergarten year though, we noticed he wasn't learning like the other children, his papers would come home undone, and his book bag would just be filled with taped together pieces of paper that he played with while the other children did their work. By the end of the year, his teacher recommended that he repeat pre-k, becasue he wasn't emotionally ready, and he definitely wasn't academically ready.<br />
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So once again, after lots of thinking and consideration, he tried pre-k again. We thought this time it would be different, maybe last year he was just too distracted; his younger brother was very sick and going through lots of long hospital stays and treatments and it was very hard on Lucas. But by halfway through the year we knew it was not different, and he was really struggling. We could see how hard it was for him to just simply write his name, and he was not able to keep up with the other children. He still did not know his alphabet or or how to write any letters. He could not remember multi-step directions for schoolwork, and he needed the constant one on one attention to complete assignments. There were 20 other children in his class, and he was falling so behind.<br />
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So by the time we had his parent/teacher conference we were worried. We were told that although he still was not ready for kindergarten, the school could had to send him on. This is when we started our journey to find the perfect school where he could learn and grow.<br />
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Luckily for me, someone mentioned for me to check out The Piedmont School. I had actually never heard of the school, I was familiar with Noble Academy and that seemed like a good fit and what we were looking for. But, The Piedmont School was closer and was smaller so we decided to look into it.<br />
It was by far, the best decision we made. I went and talked to the Dean of the school and the kindergarten teacher and was so impressed. Lucas even got to go and spend a day as a kindergartner, and he loved it. Which to me, really meant something.<br />
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Getting him to school over the past 2 years had become increasingly harder, he was very aware of his differences and that he didn't know as much as his classmates. He was frustrated, which only added to behavioral problems we were facing. And we were getting no where with his education. So we knew we had to make a change.<br />
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Once we made the decision to send him to The Piedmont School, we had his psycho-educational testing done. Through his testing, it became abundantly clear why he was struggling in school. And why, sending him to The Piedmont School was such a good idea.<br />
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His testing showed that he not only showed us why he was struggling but just how far behind he was compared to other children his age. It was an eye opening experience for us, we knew he was having trouble but we were not expecting the outcome we got. Lucas was 6 years old and performing at a 2 year old level, despite being in school since he was 2 1/2. To be honest, I was heartbroken.<br />
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Lucas had been diagnosed with Dyspraxia when he was 5, and little did we know then what a big impact it had on him or really anything about the disorder. He was also diagnosed though his testing as having dyslexia, dysgraphia, ADHD, Sensory Processing Disorder and anxiety issues.<br />
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We know that public school is just not an option for him right now, the strides he has made while in The Piedmont School are remarkable. His class is made up of only 4 other children so he gets all the one-on-one attention he needs, he learns based on a plan that is made just for him and he gets the accommodations he needs. His teacher is awesome and goes beyond what I ever expected, and he LOVES her. We still have struggles getting ready to school and some days he just doesn't want to go but once he gets there, he has fun and he learns without the constant fear of being different compared to everyone else.<br />
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Choosing The Piedmont School was definitely the right choice for us, Lucas still has a long journey ahead of him, and he has many obstacles to face and overcome in his life. But for now, I know that as long as he is going here, education is not one of them.<br />
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For information on The Piedmont School please visit their website. <a href="http://www.thepiedmontschool.com/">The Piedmont School</a><br />
And for more information on Dyspraxia please visit <a href="http://www.dyspraxiausa.org/">Dypraxia USA</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com0tag:blogger.com,1999:blog-5612111602346597967.post-76229877593120965422014-03-20T20:11:00.001-07:002014-03-21T17:59:31.987-07:00Holding back tears<div dir="ltr">
As I am sitting up watching the show Parenthood, trying to hold back tears as Max is having a breakdown because he can't understand why the other kids laugh at him. <br />
It hits so close to me, I have these fears fears for Lucas. He tries to make friends and he tries so hard to play with other kids he doesn't know. <br />
I worry so much that this will be him in the coming years. That these kids will make fun of him and laugh at him, that they will think he is weird. I worry he will think this of himself. He doesn't have the capability to understand the complexities of relationships. He learns by memorizing and there is just no way to memorize every social interaction. He already has moments where he says he is weird and he hates himself. He has told me multiple times no one will come to his birthday party. <br />
I feel so bad for him. I just want to hold him and protect him forever. In so many aspects Dyspraxia can be a gift but in so many ways it can be a nightmare. I just wish life was easier for him. I wish people weren't mean. </div>
<a href="http://s848.photobucket.com/user/endlesslybeloved/media/specialsignature_zps598081d8.png.html" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img alt=" photo specialsignature_zps598081d8.png" border="0" src="http://i848.photobucket.com/albums/ab42/endlesslybeloved/specialsignature_zps598081d8.png" /></a>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com1tag:blogger.com,1999:blog-5612111602346597967.post-7825575749860323442014-03-17T13:51:00.001-07:002014-03-21T17:59:16.973-07:00Just a reflectionAs I sit back and reflect on how much my boy has grown this year, I can't help but still worry about all the struggles he has yet to face. He is over halfway through his kindergarten year, and I am so proud of how well he is doing in school. I am thankful we found a school that fits his learning style and can accomadate to all the extras that he needs in school. Teaching him isn't easy, but again it isn't easy being him either.<br />
He struggles so much with everyday life, the simpliest things can ruin his day and honestly make my life hell.<br />
But I am so proud of him and the little man he has become. He loves his brother and for the most part, he really tries to get along with him. I know he hates when Zach accomplishes something that he hasn't yet mastered. And he gets his feelings hurt so easily, he is just very sensitive. I think this is hard to explain to people. He literally wears his emotions on his sleeves, he can go from happy to sad and back to happy again within minutes.<br />
I worry about his future.<br />
School is hard for him, friendships are hard, life is hard. Our weeks are filled with therapy appointments, psychologist appointments and school. I hope all these therapies help him in the end. I hope they help him cope with his feelings and learn to manage his anxieties and behaviors.<br />
I hope he knows how much I want him to succeed, and how much I love him.<br />
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<a href="http://s848.photobucket.com/user/endlesslybeloved/media/specialsignature_zps598081d8.png.html" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img alt=" photo specialsignature_zps598081d8.png" border="0" src="http://i848.photobucket.com/albums/ab42/endlesslybeloved/specialsignature_zps598081d8.png" /></a>Anonymoushttp://www.blogger.com/profile/04208990599535106977noreply@blogger.com2tag:blogger.com,1999:blog-5612111602346597967.post-38766496580687438202014-02-13T18:41:00.001-08:002014-02-13T18:53:51.012-08:00Vday swap box<div style="text-align: center;">
Let's show some Valentine love, back in January I joined up with Rachael from <a href="http://www.therachaelway.com/" target="_blank">The Rachael Way,</a> Ashleigh from <a href="http://www.darlingprepster.com/" target="_blank">The Darling Prepster</a> and Mandee from <a href="http://www.lifechaosandquotes.blogspot.com/" target="_blank">Life, Chaos and Quotes</a> for a Valentine's Day swap box. I usually don't get any gifts so I thought this would be fun. <br />
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I got matched up with an awesome blogger and new friend Ellen from <a href="http://www.askawayblog.com/" target="_blank">Ask Away Blog</a></div>
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We got to email each other for a few weeks, get to know each other's likes and then pick out a Vday gift for them. It was really a lot of fun. She is awesome and her blog really rocks so make sure you check it out!</div>
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I loved my gifts she picked out for me. And they all came individually wrapped in pretty pink paper. And also a sweet little note (or for Vday, we will call it a love letter) </div>
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I loved opening up all the little packages, and my boys even helped. First of all let me just say, she really nailed it. I never get anything for myself or take time for myself so I needed all of these gifts. </div>
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I have already worn my shirts several times and my lotion stays in my car, because I apparently always realize my hands are dry when I'm driving. And there was a cool little strap you hook to the back of your phone to help you hold it one handed.. yeah totally love that. </div>
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Thanks Ellen!</div>
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<span style="font-family: Calibri;">The day that changed our lives took place in the hospital where we had taken Zach for an intestinal transplant evaluation. He had been surviving by TPN through a central line in his heart for the past 8 months, and before that through feeding tubes in his stomach and intestines. He was only 2 years old, and had spent most of the past year in the hospital without being able to be a kid. And even when he was out of the hospital, he was confined. Confined due to tubes in his body and iv lines being hooked to heavy bags of liquid nutrition and bags of fluids, and due to the risk of illnesses because his immune system was so greatly compromised. His IV pole followed him around the house, from the time he slept in his bed to the bits of time he had energy to play. He was always hooked up to some sort of pump. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">Zach had intestinal failure with pseudo obstruction episodes, which meant that his intestines were no longer working. His stomach didn’t absorb or digest formula anymore and was hooked up to a bag to drain the fluids out of it 24 hours a day. And his intestines no longer tolerated the enteral feeds except at a very slow rate to basically try to keep infections down. When his pseudo obstruction episodes hit, he would vomit and gag uncontrollably for hours and days, and be in tremendous pain. He would have to have his stomach hooked to a suction machine to try and prevent some of the vomiting. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">His days at home were always short lived, the fevers and infections always returned, FAST and more furious than before. His hospital stays included blood transfusions, surgeries, and high powered IV antibiotics. Never the life we imagined for our sweet boy. We took him to several hospitals in attempts for answers, and that is when our lives changed. </span><br>
<span style="font-family: Calibri;"></span><br>
<span style="font-family: Calibri;">He had been sent to Pittsburgh for an intestinal transplant evaluation, a very invasive and dangerous surgery. There we saw a neurologist who performed several tests and told us that the probability of Zach having a progressive and fatal disorder that in most cases kids diagnosed this young don’t live past 5 yrs old, was very high. </span><span style="font-family: Calibri;">And at that point, the doctors decided he was not a candidate for a transplant, they could not do a transplant knowing that it would not make a difference in the end. They decided there was nothing they could do to help us. </span></div>
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<span style="font-family: Calibri;">Shortly after that, we heard from Make a Wish. Zach was going to get a chance to be a kid, and to forget about all the illness, and hospital stays and medications for a week. Remembering the day they came to the house to ask this sweet 2 year old if he could have or do or be anything, what would he choose. He knew and answered without a doubt that he wanted to see “Mickey Mouse House”. The smile on his face was priceless. He wanted this, he needed this so much. <o:p></o:p></span></div>
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<span style="font-family: Calibri;">During the months while we were waiting on his Make a Wish trip to be finalized and planned, Zach was hospitalized several times a month due to sepsis. He spent many days in PICU hooked to machines and pumps, and having his central line replaced had become routine. But we also learned that his liver was showing some damage from the TPN and he was losing his vascular access. He already had lost of his IV access, so when it came to removing and replacing his central line, it was very risky.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">So his doctors decided that though he was not a candidate for a transplant, we could try intestinal rehab in hopes we could force his intestines into working again. Which basically meant that for 2 months, they slowly went up on feeds through his intestines to force them to work. So for us that meant, sitting beside my sweet boy as he vomited, gagged, screamed in pain and slept and not being able to do anything to help. </span></div>
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span><o:p>Zach had been through so much in his short life already and this seemed like to us total torture, but we went through it. It was our only option at this point. If he lost any more central lines, it could be the last. Every replacement meant another surgery, another anesthesia, another race to get it him surgery before his sugar dropped to dangerous levels. Every infection meant new bacteria, more antibiotics and antibiotic resistant bugs. He was in such a dangerous place with his health. When he got sick he could go from normal to 105+ fevers in a matter of minutes, and with his fevers came his autonomic dysfunction symptoms. </o:p></span><br>
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<span style="font-family: Calibri;"><o:p>So we went with the plan, we drudged on through the pain, through the vomiting, the screaming, the heart break. It was the longest 2 months and so hard to sit and watch your child suffer. </o:p></span><br>
<span style="font-family: Calibri;"><o:p>In retrospect, I am glad we did, he survived. He got to come home with no central lines, surviving</o:p></span><br>
<span style="font-family: Calibri;"><o:p>on enteral feeds alone. </o:p></span><br>
<span style="font-family: Calibri;"><o:p></o:p></span><br>
<span style="font-family: Calibri;"><o:p>To explain my feelings during all of this, is simply not in my capability. To be told that your son would not survive and to see him in the state he was in so many times was unimaginable. I have never been a person to show my emotions to everyone. I would wait till I </o:p></span><span style="font-family: Calibri;"><o:p>was in the car on the hour drive back to my see my other son, who would have to go days without seeing me, and I would cry. I found myself in love with a song by The Band Perry, If I die young. </o:p></span><br>
<span style="font-family: Calibri;"><o:p>Something I never wanted to imagine but was so much a reality. And I prayed, it's all I could. I felt helpless and alone. Trying to talk to friends or family was a mess, no one completely understood what I felt. </o:p></span><br>
<span style="font-family: Calibri;"><o:p></o:p></span><br>
<span style="font-family: Calibri;"><o:p>February 13th marks 2 years since Zach came home from the hospital after his rehab was over. 2 years since his central line was removed and he got his life back. 2 years of not being afraid today would be the last day I got to hold him or see his sweet face</o:p></span><span style="font-family: Calibri;"><o:p>. </o:p></span><div><font class="Apple-style-span" face="Calibri"><br></font>
<object classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" height="40" id="gsSong2968366689" name="gsSong2968366689" width="250"><param name="movie" value="http://grooveshark.com/songWidget.swf"><param name="wmode" value="window"><param name="allowScriptAccess" value="always"><param name="flashvars" value="hostname=grooveshark.com&songID=29683666&style=metal&p=0"><object type="application/x-shockwave-flash" data="http://grooveshark.com/songWidget.swf" width="250" height="40"><param name="wmode" value="window"><param name="allowScriptAccess" value="always"><param name="flashvars" value="hostname=grooveshark.com&songID=29683666&style=metal&p=0"><span><a href="http://grooveshark.com/search/song?q=The%20Band%20Perry%20If%20I%20Die%20Young" title="If I Die Young by The Band Perry on Grooveshark">If I Die Young by The Band Perry on Grooveshark</a></span></object></object>
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