The need for Self-Discipline

Hello everyone, it is nice to see all of you!

Have you ever felt like you were on the outside looking in?

My name is Amanda Ripsam I am 34 years old and look younger than I appear.

I am often told I look no older than 15 and too young looking to have children at the age the kids are. I live in Otsego, Michigan.  I have 4 kids, three out High School and a 10-year-old daughter named Bella. I share mine and my daughter‘s adventures living with 22q on my site mommiesquietplace.com.

I was originally born and raised in Toronto, Ontario, Canada.

I have a unique perspective living with 22q11.2 deletion syndrome as it also affects my daughter, 3 of siblings and my father. There are over 180 conditions that can appear in a person who has 22q from heart issues to learning delays and all in-between. There is no cure and it is a managed condition. I was diagnosed with 22q when I was 21 years old.

Today I am 34 and I am a parent mentor and special needs advocate and have my own website that I use to help walk others so they are not feeling alone and isolated like I was feeling. I formed my own tribe. When I couldn’t fit in with anyone else tribe!

Living life with a rare genetic disorder is like running a 5k race! Recently I shared on social media that Bella my 10-year-old with 22q and cerebral palsy and myself ran into the girls on the run 5k race in Kalamazoo, Michigan, I posted at check in points on my website as my daughter left me in the dust running as hard and as fast as she can with her coaches.

With 22q there are no coaches!

My goal for my ministry is coaching others through life with special needs children who face challenges like 22q.  My passion is mentoring other people so they don’t have to walk an unknown medical mystery journey without a coach cheering them on!

My training for 22q was my own journey and watching my siblings endure life with 22q and my 6-year-old brother passing away from complications of this disorder. I was well informed and trained before I had my own child.

Climbing the hills of the battle against 22q and beating this illness one symptom at a time often makes life feel as though you have been clawing your way running up that steep hill at the 2-mile marker during a 5k race. I am sharing about our race because even with Bella having a secondary disorder called cerebral palsy I am enduring and persevering through our struggles with this disorder while overcoming other challenges our family faces day to day.  I can describe that our adventures are like the feeling it feels after the 2nd mile in the race and you just have to keep on going no matter how exhausted and jelly like your legs feel. 

To get to the 5k finish line you have to push through being worn down. 22q can make you feel worn out and burned out. Learning about any medical condition can and will take it toll on a person physically mentally and spiritually.  I share on my website how I try to balance life one step at a time.

Life with 22q is just like the 5k race.   Just when you think you’re almost there at the second mile you look up and see you are not done yet, but you look down and see how far you have come!

  This passage has been a source of strength and has helped get through this journey.

1 Corinthians 9:24New International Version (NIV)

The Need for Self-Discipline

This is the verse that has helped me keep on pressing on

24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.



 

Fearfully and wonderfully made

 

Fearfully and wonderfully made.      

The human body is fearfully and wonderfully made.    

When I think of the word nucleus I still remember how I was so fascinated with cells and how they multiplied and divided almost magically.

How did that first cell's nucleus from inside of my body? did it just show up one day and say hey girl what's up?  As I did my research doctors can not even explain what that energy is that creates those cells to form and divide. There's an answer I always wondered was it the spirit ? our souls?

The functions of the human body are incredible.  I am pecking away quickly at my computer keyboard at this very moment I can type all that I hear and see with speed.

The function of the digestive tract and the related organs, the heart,  the formation and function of nerves and blood vessels, the cleansing of the blood through the kidney the complexity of the inner and middle ear the sense of taste and smell and so many other things that we barely understand. Each one beyond human's ability to duplicate. Truly we are fearfully and wonderfully made.

How grateful are we to know there is a creator even one who creates humans with missing genetic material or addition genetic material he knew purpose when he created Bella and I he has a plan for us. The core theory of creation could perhaps be in this scripture.

As I grew up I wanted to know what made me who I am, why I was missing a deleted piece of genetic material and above all the million dollar question WHY me lord? How many times a day do you ask Why me lord?

as I opened up my mind and heart this scripture touched me so deeply

Psalms 139:13-16

(13) For you created my inmost being; you knit me together in my mother's womb,

(14) I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well.

(15) My frame was not hidden from you when I was made in the secret place when I was woven together in the depths of the earth,

(16) Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Fearfully and wonderfully made me stop and think of living with a small piece deleted chromosome in a different light.  Spirit is what I think forms inside of that tiny cell that changes inside of the divided cells. I only wish I knew for sure.

My favorite scripture as it has provided comfort and peace while I was struggling with coping with the diagnoses of having a piece of genetic material missing inside of me.  Imagine for a moment how hopeless you may feel being diagnosed with an illness that can't be cured.

Thank you for reading.

I wanted to share with all of you this one paragraph is what helped me cope with my hopeless moment when I first received the results of my genetic test.

Do you have a favorite quote or scripture that has helped you during your hopeless moments?