First blog post

My name is Avery Becker.

I would like to start by explaining why i decided to make a blog. I love to write, and also sing and would like to possibly someday turn my little singing hobby into a little more I guess. I would also like to just show the world what i can do.  I think sometimes people don’t think they can learn anything from a kid like me, I’m going to prove them wrong.

 

I will now explain the story of my life.

I am a 19 year old male i live in Colorado. The reason i decided to make this blog is because i have a lot of time on my hands because I’m “sick” alot and I would like to

just have something that i am proud of and I want to share my world with people. Even if my viewers do not always like what i post i guess i just would like something to be proud of or brag about haha.

I’ve always loved to write since i was in middle school. I would like to think of myself as a good writer.. Even if its not true.

i just thought if i create a blog i could have something to show someone.  I will now tell the story of my life in short.

I’m not exactly the “Average” American. I basically grew up in the Hospital. It all started at birth.  Basically i was born with something called Russell silver syndrome.  It’s a form of dwarfism, but you are proportionate.  I have a lot of stomach and intestinal issues which they told me was pseudo obstruction, and I have one more i will get to later.

I was diagnosed with these  diseases when i was around 2-3 years old. What it means is I have an extra amount of eosinophils. When you have too many they attack your nerves and just cause a lot of problems (I would not recommend it).

 

When i was 4 years old I was on TPN, which is  basically nutrients and fat infused intravenously, so I have a central line.  That’s an Iv that is placed through your chest and it goes into your heart.  That’s how I eat now.  We did this because whenever i would eat, I would throw up.  I would get nauseous because i have motility and stomach problems and I would also drink all the time and then get really sick, so the doctors decided to just stop letting me drink and just decided TPN would hydrate me and give me what I need.  When I was younger I was really tiny because of the Russel-Silver Syndrome. I was always called “Baby” in school because i was the size of a baby and my classmates looked like they could be my parents next to me [And because i was and still am really cute].  I was really quiet in school and no one thought I could talk either because I was so painfully shy.  They called that selective mutism.  I sure have a lot of diagnosis.

I was approximately 18 bs when i was four. Always tiny. Anyways, Due to me being on tpn and me being so small, I think all the sugar i had in TPN and due to the doctors not checking my blood sugars while on the TPN, I had a Massive Stroke.

At that point after i had the stroke, the Doctors thought i would not live.  They had told my parents that I probably wouldn’t live past 4, but after the stroke it was even scarier for my parents because it was happening. Even if i did live after the stroke they said I may never walk or talk again and I would have to learn everything over again.

‘But a miracle happened. God was with me every moment even if the doctors were didn’t believe in me, God did.. There was one point after the stroke my pastor and parents were praying that i would be okay and at the end, I said “Amen”.  My mom said that was the first word of my new life.  My life of starting over.  I think that could be why i am alive today.  God wasn’t done with me yet.  He had more planned for me.

Jesus gave me the strength to keep fighting, and prove the doctors wrong. And i did. I obviously wasn’t cured or I wouldn’t be sitting here in the hospital right now, but God gave me back my life so i was just happy i got a second chance.  I did learn to walk and talk and I proved the doctors wrong.

I’ve had countless surgeries and procedures.  I honestly  could not possibly count. I’ve had a few nissans and a lot of stomach surgeries etc..

I’ve been going to the hospital on at least a weekly basis if not daily when I’m out of here.  This has been going on for almost for 19 years. The last two or three years of my life I’ve been outpatient for probably 5 months at most. I also get ulcers a lot they come and go. Not too long i was then diagnosed with Churg Strauss syndrome (C.S.S) It’s a very rare disease. It mostly affects older people around 50-70. I am obviously not that old…. yet..:-)

It affects very few people so they call it rare and for a kid, its super rare so doctors don’t know what to do about it most of the time.  They have to find specialists to help them out.  someone told me there are about 40 kids  in the world who have CSS.

I just have countless things going on and it would take me forever to explain everything. So, I’ll just tell you what i do know and what has happened recently. Churg Strauss is an auto immune disease.  Which means unlike most people, i have too strong of an immune  system, and since it has nothing to do it attacks my organs.  It attacks my lungs and my stomach and my intestines.  Because of this they give me meds to knock out my immune system.  They use chemo drugs and now I’m on a really experimental drug so I don’t have an immune system at all. So it is very easy for me to catch things. After i had the stroke when I was 4 it caused me to have seizures. I have had them off and on for probably 15 years.

Anyways,  the reason i made this blog is because i would just like to share my story and like I said,  I guess have something to show that i am proud of in my life.  That maybe I could help someone else and help people to understand.  I’ve always loved writing and recently started singing and learned I really like that too. I spent a lot of time in the hospital with my music therapist they taught me a lot about singing, but I have a lot more to learn. I love singing now and love making new songs.

A big portion of my blog will be about the songs I’ve written, and you may see a lot of singing.

So, tell me your honest opinion about my writing or singing in the comments. Even if you think i suck that is fine.. Just means i have room to improve. I don’t want to be like those people who go on “American Idol” and say “My mom and friends told me I am a good singer”  So i would much rather you tell me i suck if its true rather than saying I’m great.

Don’t be afraid to hurt my feelings:-) I will be posting lyrics of my songs I wrote, and a video of me singing them.

 

Stay tuned and comment how you liked this post on my blog it would be very much appreciated 

 

 

 

 

Sent from my iPhone

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15 thoughts on “First blog post

  1. Tammi says:

    Hi Avery! I’m Dylan Crist ‘ s mom! I LOVED IT! And I’m not just saying that! It was very informative, because I’m gonna say I’m a bit ,can we be honest?,.. nosy! I think you answered a lot of my questions about your illness. And I find you quite funny! Who do you get that from??? See I’m being nosy again! I can’t wait for your next blog!! And just so you know I pray for your healing everyday!! 💕

    Liked by 1 person

  2. Mike Kontrelos says:

    Nice job Avery! I am looking forward to reading along as you continue your journey with this blog dislogue! Also looking forward to your songs as your talent is progressing quickly, ‘cuz you are a natural talent!

    Liked by 1 person

  3. Pat Ingle says:

    Great first post Avery! I hate how much you’ve had to go through in your 19 years, but I love the person you are! You have so MUCH to be proud of, this blog is just going to be adding to a long list! Thank you for sharing! In my thoughts and prayers always! Hugs!!

    Liked by 1 person

  4. Felicia says:

    Aloha from Hawaii! Thanks for sharing your blog! You did a great job writing and have a pretty great sense of humor. With how much time you’re in the hospital and the different drugs you are on, how do you feel most the time? Are you always in pain? Drowsy? I look forward to reading more entries and your music.

    Liked by 1 person

  5. Joyce Thompson says:

    Hello Avery! This is so very awesome and I am looking forward to reading all that you will be sharing. Can’t wait to see & hear your songs…. I actually envy you in that I am basically “tone deaf” lol But I love to listen to music 🙂 My heart goes out to you for all the struggles and anguish you have been through in your young life. I am so thankful that you defied all odds and showed the doctors that they are only human and CAN be wrong in their medical projections. I will be saying many prayers for you….

    Liked by 1 person

  6. RW says:

    I, too, enjoyed your post and am looking forward to more.
    One of my bffs also has CSS, she’s 33 and has been dealing with it for several years. You must be very strong to go through so much for the short time you’ve been on this earth.
    It’s wonderful that you have a relationship with God, I find it much easier dealing with my own issues with God in my life.
    My daughter is short (the shortest one in her class of 275) and she claims she’s not short, she’s a Hobbit.
    🙂

    Liked by 1 person

  7. Jessica says:

    Hi Avery ,
    I loved your post and remember great things come in small packages!! So don’t let anyone bring you down! Keep your head high and I know your destined for greatness

    Like

  8. WENDY HICKS says:

    Thank you for being so brave in sharing your story. You have already made a difference in one person’s life: Mine. So thank you. I’ve learned many things from your story. Can’t wait to hear your singing. My daughter loves to sing and write songs too. She will be following your story as well! Take care. Hugs.

    Liked by 1 person

  9. Jessica says:

    What a great read with my coffee to start my day! I love writing too and you have inspired me to write a little more each day. You are very articulate and clear with your words. Bravo, my friend! Look forward to reading more.

    Liked by 1 person

  10. Donna says:

    Great blog. You are a good writer and as tough as it is to deal with all you are going through, you handle it with great dignity. Keep smiling. You are a handsome young man with a great smile!

    Liked by 1 person

  11. Connie marshall says:

    Hi Avery!

    I am a musician, and think you are awesome!
    You have a talent and can spread a message through your songs about your life experiences. You can reach out to other people and make a difference in their lives! I think this is an awesome venue for you! Looking forward to your progress!

    Liked by 1 person

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