The Struggle is Real

Lately I have been struggling.....struggling as a mother and struggling with burying my feelings.

For the past 626 days I have been fighting, fighting to be strong and fighting to beat Type 1 Diabetes. It is my job as a mother to pick up the pieces and make everything better but since Joseph was diagnosed fate has dealt me an impossible card as a mother. There is no way for me to make this better, NO WAY IN HELL! I can't make it go away and I certainly can't control it.

I am not downplaying the fact that we are able to successfully manage Joseph's diabetes. We do an amazing job, but that is an over all picture. There are numerous times a day that we fail, and fail miserably. I am my son's pancreas.....how am I supposed to replace an organ in the body? There is no possible way that I can be as good as a healthy functioning pancreas, yet I am expected to be, to keep my child alive and to keep him healthy!

This takes it's toll on you emotionally and physically. I have watched myself lose sleep, health, patience and sanity to the point that I don't even recognize myself any longer. While I try my best to put on a happy face and pick up those pieces and move forward, I constantly struggle on the inside.

I see children playing soccer with Joseph and their parents watch them without a care in the world. Meanwhile, I sit there staring at a CGM trying to see what his blood sugar is doing and trying to predict what is going to happen next and prevent it from happening. I have to pull him off of the field to prevent a low blood sugar that is about to happen, forcing him to eat, and drink. While I want him to be a normal kid and play sports, it takes an extreme amount of work to make that happen. I find myself sitting in envy of those parents that get to fully enjoy watching their child play a sport, with no worry. I envy those children who get to play hard with no effects on their body. It doesn't just stop at sports, it is every situation, every single day!

I am sad and angry. I often sit and wish that I could just go back in time and change fate. I would give anything and everything to remove Type 1 Diabetes from our lives forever and go back to our old life.

I ask myself.......
How on earth am I going to do this for another 14 years until Joseph is an adult and on his own? How on earth am I going to feel when he is on his own and I can no longer make sure that he is caring for himself properly? How will I find the strength to keep pushing on? What am I going to do if Ethan develops Type 1 Diabetes?

I have hit a brick wall. This disease is going to be here FOREVER! Always lurking in the background and always stealing something from my child and my family. I feel like I am treading just enough water to barely keep my head out but I have something tugging on my ankles trying to drown my family. I read blogs and posts daily from other families and we are all feeling the same and battling the same demons.

How on earth do we all do it???
We have to keep on treading that water because we have no choice. Our children need us to take care of them, and need us to show them that nothing can or will stop them. However, I feel like I am teaching my son to just bury his feelings and keep moving forward because this is just something in life that he is going to be forced to cope with and manage.

I remind myself to be grateful for the discovery of insulin, although it is just his life support, it gives him life! I remind myself that they are making great strides in advancing the management of T1D and lowering the risks of long term complications!

I remind myself to keep the hope that we will have a cure, but I don't want to wait and hope. There are parents and diabetics that have been waiting and hoping their entire lives for a cure! So I force myself to stand up and do something about it. I am using my voice, sharing our story and trying my best to raise money to prove history wrong. I will not stop until my son has a cure and my family is free of Type 1 Diabetes once and for all. I am not judging those families that don't participate in raising money or advocating, I am just saying that I can't and won't sit back and wait and just hope for something to change.

 Get up, Stand up and BE the change!

I am inspired and encouraged by the diabetes families that I have met. Without their constant support, I am not sure that I could keep pressing on, in the manner that I do. So thank you to those families and thank you to those who find refuge in my words. Just know that you are never alone and we are all feeling the same way and thinking the same thoughts. We are in this together and together we will beat diabetes once and for all!!!!

This is not routine.....

This month has been a whirlwind and I can't believe that it is nearly over. We are trying to get back into school mode and Joseph is playing on his school soccer team again this year. It has been challenging to adjust his diabetes management with the new physical activity and the hot weather that we have been having! We are desperately trying to fight off those low blood sugars with the help of our Dexcom CGM and NIGHTSCOUT (see details here) Learning how is body responds is one of the single most difficult things to accomplish because it never seems to be the same....EVER!

Along with the school and soccer we have also had to take Joseph to the Ear, Nose and Throat specialist. This is a bittersweet moment for us because Joseph actually had a surgery scheduled to remove his tonsils and adenoids. Joseph has very large tonsils that cause him to snore and have sleep apnea. Joseph's surgery never happened because he was diagnosed with Type 1 Diabetes just 2 weeks before his surgery date and there was NO WAY that we could put him through a surgery while he and we were still learning to cope with having shots, finger pokes and managing his diabetes. His snoring and apnea are continuing to worsen, so we decided that it was finally time to schedule that dreadful surgery. This time is it a lot more worrisome than pre-T1D.

This time we have to worry about so much more than just the surgery itself. How we are going to managing no food or liquids after midnight? If he has a low blood sugar we have no choice but to give him something to treat it! What blood sugar range do we send him into surgery? How will his blood sugar react being under anesthesia, and how will he react? Will they let us monitor him via NightScout while he is in surgery? How are we going to get him to eat and drink after surgery to be able to regulate his blood sugars?  These questions are continuously running through my mind and my nerves are already shot and surgery isn't for another month.

This is no longer the normal outpatient routine procedure that was scheduled before diagnosis. We are now having his surgery done at the hospital. The hospital where they have the T1D pediatric unit in case something goes wrong and he has to stay for treatment, the hospital we spent the first 3 days of his Type 1 Diabetes diagnosis. We must have consultations with his Endocrinologist, Pediatric Anesthesiologist, and Surgeon. There has to be a plan and there has to be a backup plan if god forbid the need arises.

This is not routine, but then again, this is what life is like when you are living with Type 1 Diabetes, nothing is routine!

Am I an Advocate? ABSOLUTELY!

This past month I have been eating, sleeping and breathing Diabetes Advocacy and I love every minute of it.

I have done everything from a speaking engagement, fund raising, writing a magazine article, to helping a fellow D-Mom get a revolutionary Free Diabetics Movement off and running!

This is what dreams are made of, standing up for what you believe in and never looking back! Fighting for awareness, fund raising and a cure is a battle I will win. I will not stop until my son is no longer bound to the shackles of Type 1 Diabetes.

Thank you to all who have supported and encouraged me on this journey. It truly means the world to me and has shown me how much compassion and generosity is still left in this world and that gives me the hope and drive to continue fighting!

If you haven't done so already visit the Free Diabetics Movement pages on Facebook, Twitter @freediabetics_ and Instagram @freediabetics You don't have to be a diabetic to post a picture, you can post one on behalf of a friend or loved one living with Type 1 Diabetes. Just tell us how long it has been since you or they have been "free" and hashtag #FREEDIABETICS. If you would like to post one on behalf of Joseph he hasn't been "free" in 1 year 8 months!

I look forward to seeing your beautiful faces!

Thank you again, from the bottom of my heart for all of the love and support!!

-until next time

#FREEDIABETICS

Have you heard of the newest movement in the diabetes world?
Free Diabetics Movement

This is one of the most brilliant advocacy movements that I have seen since the "No More Pricks" campaign.
The objective: A mug shot! Why a mug shot? Well because those living with Type 1 Diabetes have been sentenced to Life in Diabetes Prison.
It is simple, take your mug shot and tell the world how long it has been since you have been "FREE". The creators of the movement are going to make a video for November's Diabetes Awareness month. The cool part about this campaign is, the mug shots don't just have to be of the diabetic. You can take a mug shot for a loved one or friend living with Type 1 Diabetes and telling the world how long it has been since they've been "FREE".

Here is Joseph's Mug Shot that I posted to my social media accounts today.

 

 

Join the movement and let's start getting the awareness that Type 1 Diabetes deserves! Don't forget to post your pictures to the Facebook page listed above, as well as use the hashtag #FREEDIABETICS on your social media posts!

 

 

-until next time

Tomorrow isn't guaranteed......

The last week was....well, a complete disaster.

We lost a close family member to Leukemia just a few short days after his diagnosis. I had a medical procedure done to try and figure out the source of my health problems. My dad got his biopsy results from a procedure and they came back precancerous. Then on my 10 year wedding anniversary my grandfather fell off of a 7ft ladder while working in his garage and broke his hip. He went in for surgery on Friday and that began a whole new battle, as his life was in danger with low blood pressure and a high heart rate. He had a triple bypass 20 years ago and the doctors were mentioning a potential heart failure. We all prayed that wouldn't be the case and just waited for his condition to improve. Thankfully he was able to pull through (with the help of some amazing doctors) and is now on the road to recovery.

I am sure you are asking where Diabetes was this whole time?!? Well actually it sort of just became the background noise to all of this chaos. Nothing too crazy to report just the normal daily struggles.

A week like last week just reminds me that life is often taken for granted. One minute you can be here and the next is never a guarantee. Diabetes makes that a daily reality in our lives for Joseph, but I never really think about the rest of us. Just because we don't have T1D doesn't mean that we will be alive tomorrow. We need to embrace today and our loved ones because we never know what tomorrow will hold!