top of page

22q Deletion Syndrome Is A Battle. But Have Faith.

22q Deletion Syndrome... there are good and bad things with it. All of us who struggle with it know how hard it can be. Families who have someone with 22q can see what you are going through when no one else can. I will say that throughout my whole life I try to be very positive through out my disability but sometimes, just like everyone else, I get discouraged and frustrated about it. But then again, who am I to get frustrated with who God has created me to be?

But having 22q can honestly be like an uphill climb. Like you start out very small in life and then you take baby steps to climb up that mountain until you reach to your full potential. To reach the top of that mountain. When you think you have made progress with this disability it seems like you have to start all over again at times. 22q Deletion Syndrome is an battle everyday. Honestly, having a disability doesn't mean that something is wrong with you, or because of any sins you have done. Some people might think that. But let me be the first to tell you... it is NOT true. Just like someone who is born with blue eyes, someone who was born with a disability, have it be 22q, Turners Syndrome, Autism etc..... it's just who WE ARE. Also, unfortunately there is nothing we can do to change that. But we can become a better version of ourselves and make progress.

Life for me with 22q looks like this. Sometimes it is a struggle keeping myself motivated to do things. Sometimes I get very anxious to the point where I can't do something anymore. I have learning difficulties. My energy goes down faster than others. Trying new things is difficult for me. Staying on top of a subject, like homework, is hard for me to stay focused. Oh, lots of stomach problems. Severe anxiety. Having to make sure my calcium levels are always normal. Sleep is a struggle for me. Meeting people my age is hard. Calming myself down can be tough. I feel like I always have to walk around and do something all the time. I just can't be still. Keeping things organized is such challenge. Keeping myself encouraged all the time and getting myself to feel like I can do it and that I am strong. In other words, self motivation. But I don't like to complain...(I know God believes I am strong and capable of anything.) That's what keeps me going. How God sees me.

These are a couple things that I have listed. It is truly a battle EVERYDAY. Someday's I may doubt myself, or look down on myself because of my everyday struggle. But the thing that is so very important is telling yourself that YOU CAN DO IT. It's also important to not give up on things. No matter how hard it can be.

Okay, so do you know the lyrics to the song "The Climb" by Miley Cyrus? Okay don't leave me just yet. This song just came into my mind for this post. Because the lyrics are what matches this post.

"I gotta keep trying Gotta keep my head held high

There's always gonna be another mountain I'm always gonna wanna make it move Always gonna be a uphill battle Sometimes I'm gonna have to lose

The struggles I'm facing The chances I'm taking Sometimes might knock me down But no, I'm not breaking

I may not know it But these are the moments that

I'm gonna remember most, yeah Just gotta keep going

And I, I got to be strong Just keep pushing on"

So even though there's always going to be another mountain, more struggles with this disability and even though we will want it to go away and make it move away. Did you know that all things are possible with God? Matthew 19:26. We gotta keep fighting with our head held high and never give up.

Let's keep fighting our way up to the top of that mountain.. Just be strong. God is cheering you on!

bottom of page