November is National Diabetes Awareness month.  It is a time to try to educate others on our life with Type 1 Diabetes.  Education is so very important, not only for those on the outside, but for those of us living with this day in and day out.  It feels like I learn something every day.

Some of the most important lessons I have learned are from the mistakes I made as a mom dealing with this diagnosis.  There are so many things I would do differently.  So many things if I could I would go back and tell myself.  So today I am writing that person from 5 years ago a letter to let her know that it will be OK and to help her navigate through her life forever changed by Jacob’s diagnosis.

September 6, 2012

Dear Wendy,

Tomorrow is going to suck.
Tomorrow what seems like a silly hunch will become a reality.  Jacob does in fact have Type 1 diabetes.  It will all be confirmed with a simple blood test.  Tomorrow your life will change in ways you won’t understand until some time has passed.  I want to ask you a few favors…

Please remember this is not your fault! 

You will want to blame yourself.  You will ask how this could happen and you will be reassured that there was nothing you could do to avoid it.  You will want to believe them but then they will tell you that autoimmune diseases can be passed down and they will ask if anyone in your family has one and you will tell them “Yes, I do.”  You will blame yourself for this.  PLEASE DON’T.  Knowing “why” will never bring you peace.  Acceptance, unconditional love and grace will.

Please take care of yourself!

For almost 2 years you will give and give and give.  You will give up sleep, meals, and your workouts.  You will focus on Jacob’s health and on Alex not getting lost in the shuffle.  You will be available to the school no matter what.  You will give up nights out with friends and dates with Steve.  You will give so much to the point where you have nothing left to give.  PLEASE DON’T!  Remember, it is not only OK for you to take time to take care of your physical needs of good food, sleep and exercise and your mental health needs of letting go and letting someone else take over from time to time, it is necessary!  You can not take care of your family if you are broken down and exhausted all the time.

Please don’t try to do this on your own!

People will want to help you.  They will want to teach you what they have learned.  This will completely overwhelm you at first.  They will be talking about basal and bolus doses, pumps and continuous glucose monitors, what to do when he is low or high or has ketones.  They may as well be speaking in a different language.  You will shut down because it is just too much.  Later you will feel like you have to do it on your own.  You will feel that admitting you need help makes you less of a parent.  PLEASE DON’T.  Eventually you will learn and get support from the most amazing people who will never make you feel less for having a bad day or for not knowing all the answers.

Please don’t be hurt by what others think and say.

People will want to share with you all they think they know about Type 1 Diabetes.  They will share opinions and pass on articles about all sorts of things.  Many of these thing will feel accusatory like articles about how having a C-Section or giving vaccinations or feeding babies cereal to soon can increase the chances of your child later developing Type 1.  Some will offer advice based on misconceptions.  Like how adding cinnamon to all your food or drinking some amazing pink drink will cure Jacob of his disease.  You will want to get mad.  PLEASE DON’T.  Remember that they are coming to you from a place of love.  The advise may not feel like it, but they wouldn’t bother sharing it if they didn’t care.

Please remember to find the good in everything.

This journey will be hard, but it will also create a bond with your family that will be nearly impossible to break.  This journey will show you just how strong you are.  It will lead you to some of the most amazing adventures, people and times.  Tomorrow you will feel hopeless.  PLEASE DON’T.  Learn to find the good in everything and teach Jacob to do the same.

Please share your story!

As you learn to deal with this disease you will also find your purpose.  You will slowly get back to being Wendy, not just Jacob’s mom.  You will learn to find a balance between the new responsibility and somehow not letting this disease take over your life.  You will fall more times than you can imagine.  You will be mad and you will cry and you will want to keep this all inside.  PLEASE DON’T.  Every time you get back up you will give hope to the person who needs it most, Jacob.  Sharing your journey will help you heal.  It will raise awareness.  It will help turn your struggle into triumph because you can’t go back in time and change how you did or did not deal with this diagnosis, but you can offer hope to other parents who are struggling and feeling alone.

You will be OK, Wendy.  Not right away, but soon.  Take it one day at a time.

5 years later I still have bad days.  I really do learn something new every day.  I fundraise and advocate for Jacob every opportunity I get.  We have reached a new rough point in this journey- teenager!!!  In another 5 years I will have a new set of lessons to pass on to the person writing this today.  I know that I can’t go back, but I can learn from the past and pay it forward.

Each of us has a struggle and a story.

Don’t be afraid to share it with the world!  You never know who may need to hear it.