A New Story

There is this big incredible story unfolding in my life. A story about a new way of living healthy, a story of living our values even when we are being challenged in new ways, a story of growing our life in new and exciting ways.

There is also another story. One I really need to tell.

This is the very raw story of a mama whose 4-year-old daughter just got diagnosed with Type 1 Diabetes, after ending up in the ER in DKA (what happens right before a diabetic coma).

I feel the need to share this. I want to share with the people who love us, the depths of what I am experiencing right now, and I hope that our story will somehow be retold or remembered, to help other mamas going through all of this.

Before a week ago, I never would have known how serious Type 1 Diabetes (T1, from here out) was or what a mama and a family went through.

I know there will be parts that are different, but it's all the same story - overwhelm, love, light, fear exploding everywhere, questioning ones values, trying to learn a whole new way of living in a way that doesn't kill your child or mess up your other ones.

But it started in a hospital.

As I watched my baby get hooked up to machines and tubes. As I had to help hold her down while they stuck needles in her arm and she screamed for them to stop, that it hurt. A baby who was barely conscious. And then to watch her lay on a bed, a completely different version of herself. No light, no pizzazz, no sparkle, just sunken eyes that rolled back in her head, a skinny body where there once was chunkiness and mooshiness. Laying in a huge foreign bed. My little baby.

The doctor said diabetes. No way, I said. How could that be possible? She is only 4. It can't be that.

It is.

Blood sugar (usually around 90) now 882.

I am blown away. All these moments from the recent past coming up, like a video montage, times I had heard the word or mentioned how much water she was drinking or how often she had to pee. Maybe it was the soda I gave her because I thought she had a flu. Maybe it was the Christmas candy. What could I have done to prevent this? What was this going to mean for our life?

And then she gets transferred to a hospital we hear has a great pediatric unit. No wifi. No way to connect with my outside support. All just me. It has to come from within, and I don't know where to drawn from.

New hospital. Nurses and doctors making choices without my ability to even help. All I can do is sit there and watch them do things to my baby's body that I would never do to her or wish upon my worst enemy.

Times she wakes up and tries to pull out the IVs, and I have to try to comfort her, but she is not her. She scoots away from me, instead of cuddling me. Being close to me is uncomfortable for her. And so I sit next to her bed and hold her little hand and try to just be present.

All the researching is going to have to wait. Since there is no wifi, I know I am meant to just be present with her, learn everything I can from the nurses, every single thing they are doing.

Me, who has feared and not appreciated the medical model of health and wellness. Now I have to completely trust them with one of the most treasured and vulnerable pieces of my heart. And now I am learning a language I never thought would come out of my mouth - I am speaking medical supplies and medication and diagnoses. My mouth astounds me.

Staying present with her.

Staying present with doctors and nurses who I have to send all of my love and gratitude to, even while they sometimes interact with her in a way that tears my heart open. Staying present while I sit in another room and explain why I don't see it as helpful to roughly tell her to wake up and squeeze your hand while she bawls her eyes out because she is so tired and so worn from the ordeal and just got back to sleep.

Staying present with social workers and CPS who don't understand our lifestyle at all. Having to defend things they have no clue what they are talking about, as they put me in a box that is not mine.

The fear that they can separate me from what matters most to me in the whole world because they don't understand me or see our greatness and sameness.

Because that fear feels very real as I am already experiencing a serious separation of almost everything I know and love.

Almost a week in the hospital, away from my 6-year-old son who has been attached to my hip since birth, who has never been away from me - we homeschool, I am a single mama. I am his source. And I worry every moment about how he is doing. Knowing he is with his godmother and her family and my oldest daughter, but knowing he doesn't have me, and I don't have him. And my baby's first intentional words were asking where he was.

Being faced with the fact that our little trip out here for the holidays is going to be a much longer stay. Knowing that my world just turned upside down. No more living on the road for me. No more living in our van. So, what does that mean? And where do we do it?

I am so incredibly blessed.

Blessed that I am who I am, so I could shift this internally to not be the end of the world.

Blessed for the T1 mamas who contacted me on Facebook to load me up with support and info that I could screenshot and read in my room.

Blessed for my mom raced out the night we were admitted, and took it upon her to be my babysitter. She filled me up in ways I needed, and I could not have imagined being able to do that without her calling me everyday and coming to visit (4-hour roundtrip trip for her) as often as she could.

Blessed to know my older kids were safe and very well.

Blessed for the incredible pediatric nurses and pediatric team (nutritionist, child life specialist, etc) that were so good to me and my baby through all of what we went through.

Blessed for the huge outpouring of love, support, and healing vibes being sent from all around the world to us.

Blessed that when she became coherent, she was so easy about everything. The nurses were astounded by how she just sat and watched and didn't even flinch, much less resist.

Blessed to be able to flow, in trying times, with grace and elegance.

Blessed for the sentence in a packet they gave me that assured me this wasn't my fault, that there was nothing I could have done or not done differently.

Lots of tears. All the time. Times when I felt great and simple and on top of the world, and times when I seemed faced with an enormous job and responsibility that I had no idea how I was going to be able to do.

Triggers of mine. Oh, so many of those.

Tired of being in the hospital. Missing my kids like freakin crazy. Jaja starts getting resistant.

Now, I have to physically restrain her so they can give her a shot I know she is going to have to get for the rest of her life, every day, no exceptions. She is asking for a break, and we can't give it. My insides are screaming that this is wrong - there is another way. But the nurses don't get it or have time for it, and the doctors have other priorities.

I am weighed down so much. So heavy. I race down to the coffee shop a couple floors down every time I think my baby will be okay alone in the room, and I grab a few minutes of connection, usually with my super-resource and super-support of T1 mamas. A couple times with my own personal emotional sources. I have lots of work to do.

Because I know that she is picking up on my cues, on my energy about all of this. And I want to just keep myself clear that I am just her pancreas now. That's all. It's not bad, just different, and of course, since this is my life, open up to trust that this is happening for reasons that are going to expand us in ways we are going to love and appreciate.

Finally, we get to go home.

To finally adjust to our new life as we know it, with our family, in the comfort of familiar surroundings.

Every moment in the hospital was so emotionally intense, no matter whether it was "good" or "bad".

Now, we could be home.

Unexpected pressure suddenly. Anxiety at the mere mention or thought of food. What if I don't do it right? What if I do the math wrong? Every piece of food now holds the pressure of whether it can kill her or not.

Food! Something we have never been serious about (intentional, yes, but not serious), and something we can't live without.

And now I have to lean on my friends so much - my friends who I am staying with, and anyone else who can possibly give me support and help in any way. That was already an issue of mine.

And how am I going to afford this? The pharmacy gave me syringes with a bigger guage that hurts her, and she has to get a minimum of 4 shots a day - 4 shots she is already terrified of, 4 shots of trying to find a balance of between honoring her feelings and honoring what her body needs.

Every moment is still so intense.

We ended up back in the ER, because she threw up (which is a warning sign of danger for T1s). Barely home for 24 hours, and back there again, wondering how long this stay will be and how life will ever feel "normal" again.

Scary every minute.

So outside of myself.

Needing SO much help.

Every thought is on her food, her shots, her appointments, CPS adding pressure to all of this.

Anxiety through the roof sometimes.

Moments. Deep breaths. Remembering who I am. Holding my own hand. Accepting people reaching out to me. Intentionally remembering and re-exploring my truths.

This is a whole new world. A new story. And we will be pros before I know it. The opposite of anxiety, for me, is trust.

I am so grateful for being where I am with this, so early. As far as acceptance and trust.

Of course things are going to work out.

This is just our new story.