Smiles

Sitting listening to the wind blowing through the trees in the backyard is so peaceful. The rain is tapping lightly on the enormous windows...the house is silent. Not a sound to be heard. The dogs are all asleep, the cat is in hiding somewhere and I am here alone. I don't want to move. I want to lay here all day and listen to these sounds.

I haven't remembered to stop this week. A promise I made to myself months ago...stop and relax. Enjoy the moments. You can't have those moments back.

I can feel myself smiling from the inside out today. Those are the best kind of smiles...the ones that start in your heart and soul and work their way through your veins until they reach the corners of your mouth. The warm smiles...they warm your soul. Those are the smiles that count. Those are the smiles that let you know you are so happy in your life. The smiles that make you feel blessed.

I am so not alone in my life. I have someone by my side that has fought so hard for me. And loved me like I have never been loved before. I can conquer anything with him by my side and he will always make sure that I do...the moments that I think that I can't, he reminds me of who I am.

I can be the strongest woman I know how to be.  I get that strength from the innocence I see in my children's eyes and the innate need to fiercely protect them from all things. I am blessed to have been given the enormous amount of tenacity that my parents passed to me. It's how I make it through all of life's challenges that get thrown my way.

Through love you can do it all. There's that warm smile again...

Fear

Fear is fearful in itself. Fear of the unknown. Fear of the unbearable truths we do know. Fear of failure. Fear of loss. This last one is hard for me. I am going to paint a picture for you of what goes on behind closed doors. These closed doors lead to my thoughts which ultimately make up my imagination. An imagination that is so vivid it is hard to control. It's hard to control because of the fear of the unbearable truths I know too well...

People die. It is part of life. We spend our lives trying to live to the fullest so that when we do die, we have no regrets and have left our mark. I try not to be morbid. I try not to let my imagination go wild on me and play out all of the scenarios of losing our battle to diabetes. I do a pretty good job of this but sometimes, those fears creep in and take over my thoughts. The truth is there is something called Dead In Bed with diabetics. They just die for no reason that is known as of yet. There is a fear of Lily dropping too low and having a seizure. I am aware of all of these and honestly, I go days and months without it bothering me or being overly fearful of this. The statistics of this actually happening are on our side. Like I said before, there are times that my imagination goes astray. It is usually when she is not under my roof that this happens. It's a fear of not having her here to care for. So what should be a night of fun, a sleepover party, is a night that includes some fear. What if tonight is the night that something happens? My mind goes there. It is too painful and I bring it back.

I can't imagine just dropping my child off at someone's house to spend the night and just going on about my night. It's such a far reality from our life. So when I couldn't reach her this morning....the fear took over completely. I think I woke the entire house up where she was. Early. I had to though. What if she wasn't okay?

Imagination can be cruel. The thoughts that go on behind these closed doors are haunting and desperate. They are cruel and well, unimaginable. But they are real. They are part of the life of a mother of a diabetic child. Luckily, they don't visit me often and they leave as soon as they come. And now my baby is here in my house. Under my roof. Safe and breathing life as we speak. Life is good and precious and fragile and I love every second of it with her here by my side.

How cute is she to send me this picture so I know how big the pizza is when I'm not there?

Little Foots

I lay awake at night thinking about little foots. The best part of a baby is the little foots. I am so excited to be a mommy again...and this time to a little boy. I never really wanted a boy until I found out I was having one. I was surprised that I was so incredibly thrilled for this little man to come into my life. So excited.

Little foots running around my house. Little foots stretching in the footed PJ's. Yes...I have a fetish for little feet. I can't wait to meet the miracle inside of me. He is such a comfort each and every day. He hates seatbelts. He hates the elastic in maternity pants. He doesn't like it when I lean over too far. I am guessing that he is not going to enjoy being restrained at all once he is born. As soon as I put my seatbelt on, I get poked and kicked for the entire ride in the car. If I am wearing maternity pants, he pokes and kicks while I sit.

He has just started playing with his daddy this week. If Matt puts his hand on my growing belly, after a minute or so, he gets a nudge. Matt will nudge back and wait...and he gets another nudge. He will be playful. We are both already so in love with our little boy.

It's been a long, at times very sad, journey for both of us to get to this point. What a true blessing. I can't wait to see his sisters the first time they meet him. He is all they talk about. What a lucky little guy he is. What a lucky little family we are.

Innocence

There is truly nothing in this world like the love you feel for a child. They are a reflection of hope and dreams and what life is about. Their innocence is so pure. If there is truly anywhere on Earth that you see a form of God, it's in the eyes of a child.

Something happens in life that hardens you as you get older. Maturity. Along with maturity comes life's disappointments, heartbreaks, losses, and so much more. You learn from these events and you either choose to rise above them or stay the victim they once made you.

I see life happening to my daughter Lily and I can't stop it. It is the hardest thing I have to face as a parent. I can't stop her little body from fighting against itself. First, with Type 1 diabetes and now with Celiac Disease. She has become stronger for it and for that, I am proud. She has maintained a positive attitude all through this. I am the one falling apart piece by piece. She doesn't know this and she never will. It's a sense of failure that I have. It is beyond my control to put an end to the constant disease in her life. All I can do is show her that this is not the end of the world (it's just a diet change) and that she will be healthier because of it. What is breaking my heart is the fact that this is one more thing to add to her little life plate forever. Forever. I hate that word...it's part of the constant stream in my head. Forever. Fuck you forever. We need to find cures for these diseases.

There is a poem that floats around Facebook periodically about God choosing a child to have diabetes and giving that child the perfect mother to care for her. People find comfort in these words and this idea that God gave their child diabetes. My God doesn't hand out diseases to innocent children. What about the children that have diabetes that don't have parents? Or live somewhere that insulin is not readily available? Did God say "Screw you child...you will be the one to suffer. You don't deserve the perfect mother." It makes no sense to me. Children get diseases as a direct result of life on Earth. It's part of the process of living but Lily was not chosen to fight this disease every day forever by our God. I don't believe that for a second. However...God gave us the strength and will to live a happy life and rise above these diseases.

Life is happening to Lily. At a rapid rate. She is 9 years old. She is starting to experience being left out with friends frequently. She has had to endure the loss of a possible little sister (I'm not quite ready for that post yet). She has been through two diagnoses of diseases. She is learning where to put those feelings she has about this and how to articulate them. All I can do is listen and help guide her. I don't want her to suppress anything. I did for years and years and still struggle not to do so now. With the diabetes diagnosis, I cried once for about a minute and then I plowed forward. The mourning didn't catch up with me for three years after another traumatic life event. This time, I am acknowledging my feeling of loss and fear and I am accepting it, allowing it, and with every day...moving past it. I don't want her heart weighted down.

Yes, I look into my child's eyes and I see the innocence fading some. I guess all parents do regardless of disease or heartache or anything else. It's growing up. It's inevitable and it's a beautiful and sad thing for a mother.

Life Lessons

I read online today that the teenager that was sent to jail for 30 days was released after a tearful apology to the judge that she disrespected. What he did worked. She was held accountable for her actions. It was probably the first time in her life she was held accountable for anything.

I can't imagine ever having behaved that way. There was a certain Fear of God when it came to my parents. My father especially. We were taught to be responsible. We were taught to take responsibility for our actions. We were taught to be respectful. Most importantly, we were taught that there are consequences for our actions. This is a lesson that must be given when parenting. It has to. If it isn't, decisions might be made by our children that can't always be undone by a simple apology.

About two weeks ago, Lily told us that Abby had stolen a cube from a teacher at school. It was a little plastic cube that is used as a manipulative in math. When Lily learned what Abby did, she took the cube from Abby and walked it back to the teacher and told her that Abby had taken it. As I'm sure you can imagine, Abby was very upset that her sister sold her out. When I learned of this, the world had a slight shift. I was absolutely furious. Furious and determined that this child would never steal again.

When I got home from work, Abby and I sat down and wrote an apology letter to the teacher. Abby cried the entire time. And whined. And complained about Lily telling on her. We had a very long, very firm discussion on why you don't steal and what happens when you do. She was afraid the teacher may call the police. My intent was not to scare her but to make her understand that this was not a behavior that can be undone as an adult. We talked about it for a long time. She was even more upset that I was taking her to school in the morning and walking with her to this teacher's classroom to hand deliver the note and give an apology in person.

I am hoping that Abby learned a valuable lesson and she will remember this. I am hoping that she will understand that there are severe consequences for breaking the law. I am hoping that she will learn that if she were ever to find herself in front of a judge period, AND was disrespectful to this judge, that facing me might be worse. I love my girls. I am their friend. BUT...I am also their mother and it is my job to mold them and teach them how to be good, solid, contributing members of society. It is my job to lead them by example on how you behave and live a good life. A little Fear of God is a good thing in my opinion. It only took me over 30 years to get what my parents were trying to do.

Balance

Words. My head is a constant stream of thought. It is exhausting and empowering and passionate and therapeutic. I have taken breaks from writing and as always, I reach a point of explosiveness and I do what I always do, turn to words. It's the only way to calm the storm.

I don't make decisions well. I teeter-totter through the thought process. I can convince myself that every possible view is the right one. It isn't usually until I sit down and write about it that I get clarity. I feel like I am constantly looking for the perfect recipe for my life. The perfect balance between work, family, love, leisure, and everything else. As soon as I think I have my happy spot and I have everything in just the right measurements, something shifts. Life throws something at me that throws me off balance. Then the searching begins again for the perfect recipe.

I have written my entire life. It is ingrained in every ounce of my being. I have a box of journals in my garage. I started when I could start writing. It is so enlightening to read through my childhood journals. I have been able to read through journals that described in detail my every thought about my parents marriage that ultimately led to their divorce. I have a true glimpse into my relationship with my sister and how much I looked up to her...and needed her. There are endless words about friendships and just growing up. It has made me remember everything with more clarity and it has helped me understand how I became who I am. What a gift I gave to myself.

So I sit here writing again. Another balance shift in our lives. I know things are going to be okay. I have never fallen and not gotten up. I have never watched someone I love fall and not helped them up. It's not an option. Things will be okay. But it's another shift. It's another thing to learn and accept and conquer. So, I take to words to help me release some of the worry and angst.

Celiac Disease. These words are the constant stream for now. I am not able to balance until I know for sure that this is our new normal...until I know for sure that Lily is okay with all of this. Only time will tell and for now all I can do is wait until all of the testing is complete and at that point, I can work on finding the balance again.

Five Years...

 I can't believe it's been five years. It feels like so much longer...much, much longer than five years.

I will never forget that weekend. It was the weekend of the Greek Festival and we had been very busy. We spent that Thursday evening with friends at the Festival dancing, singing...and taking multiple trips to the Port-A-Potty. Lily went through a few sippy cups of water that night. She was dancing like any crazy 3-year-old would when there's a live band. It was 100 degrees. I didn't think much of it.

I had been telling my friends that she had been tugging at her panties all week. Her Mother's Day Out teacher had mentioned it and her grandmother had as well. They suggested I take her to the pediatrician the next morning to see if anything was going on. So, we got up that Friday morning and headed to the doctor. I told him about the panties and that I was concerned she had a yeast infection maybe. He checked her externally and sent us home. He didn't find anything wrong.

That evening, I told Lily's dad about the visit. He was upset that he didn't do a urine test since she may have a urinary tract infection. I had never mentioned the multiple trips to the bathroom and the excessive thirst from the night before. It didn't seem out of the ordinary to me except in hindsight after her diagnoses.

We woke up that Saturday morning and got ready for a birthday party. We made what we thought would be a pit stop at the pediatrician to have a urine test done. I spent a LONG time trying to get my toddler to pee in a cup. I was frustrated. She was frustrated. We sat and waited for what seemed like an eternity for the results to come back. We were late for the party now and I was not happy. Lily sat in her leotard playing quietly. The doctor came in with a sullen look on her face. She said that Lily had high levels of glucose in her urine which usually meant type 1 diabetes. My ears got all fuzzy. I couldn't make out what she was saying. Diabetes? What had I fed her for breakfast? Did she have a lot of sugar? She asked about excessive thirst and urine...my mind went straight to the Greek Festival at this point. Her blood sugar was in the 300's. This wasn't normal. This was high. My mind couldn't process anything. My heart was racing. I knew something very scary and bad was happening at this minute but I didn't understand what. I knew of diabetes but I knew nothing about it. At this point, we were sent to the ER. Her daddy took her while I went home with her almost 1-year-old sister. I waited and waited calling her dad every few minutes for updates.

They sent him home. She had no ketones yet. They sent her home...this still baffles me. Her blood sugar was very high and they sent her home. Space issues. Her daddy brought her home and was angry. He comes from a family of physicians and he knew EXACTLY what was going on. He understood. I was in denial. He had her pee on a ketone stick and it was dark maroon...VERY high ketones present. She was in danger of going into DKA. I only get this now.

He went back to the ER. I got a babysitter and followed. Within a couple of hours, she was admitted and was given a diagnosis of type 1 diabetes. Insulin forever. Shots forever. Finger pricks forever. Counting carbs forever. Fear of Dead In Bed Syndrome forever. I didn't shed a tear except once in the shower. A defense mechanism. I had to be her rock. I had to get her through this. I had to make it okay. She was scared and confused and didn't understand why we were hurting her multiple times a day by piercing her skin with needles. It took us a few days to realize that the lancet device (that you check her fingers with) from the hospital was very painful. It was taking two nurses to hold her down while I checked her fingers. How the fuck was I going to do this alone for the rest of our lives? Someone gave me a new "popper" as we called it. She didn't flinch. She was fine. She didn't even wake up when I checked her anymore. Damn hospitals. Damn me for not knowing enough. Things got better from that point on. We did research. We learned how to count carbs. We learned the facts about type 1. We learned that she can lead a normal life. We learned that yes, she can eat cupcakes and pizza at parties. She just needs insulin. She is powered by insulin.

With that, we also learned the fears and worries. We learned that Lily couldn't just go to school anymore. She couldn't be dropped for playdates. We learned that some friends weren't willing to include her in activities because of their fear of the disease...or they didn't want to deal with it. We learned who were true friends as well.

So much has come from diabetes, both good and bad. The bad is obvious...my child has a shitty disease that has a mind of it's own. If you try to control it, you will spend life chasing your tail. If you don't try to control it, you will lose your child. After five years, it is part of my life. It's part of my thoughts. It has become a part of our life that is there and always thought about but not obsessed over anymore. It's part of our routine. The first year or so it was all we did. All we thought about it.

The good...well, Lily is a more mature, passionate, considerate, sympathetic, courageous, and brave little girl because of what she has been through. She thinks life is precious. She is right. She has plans. She has a future. She knows she is special. She is very much her own person. Nothing makes her change who she is. If she meets a friend that she feels isn't a good friend, she quietly moves on. She wants no part of the drama little girls create. She is so confident and that is the best gift this little girl could have. She is a hero to so many people. She chooses to live her life and love her life. She has tons of questions about diabetes and why she has it, why people are sad when their kids get it, etc. There are so many teachable moments as a parent with her. She gets it. She gets life.

Lots to say today. This is always a very emotional day for me. There is a break in my past. I see pictures from our trip to Martha's Vineyard and that is our last vacation before the big D. There's a line in my history. Before diabetes and after. I pray every day that a cure is found but I have to say, I am not always so full of hope. It seems so far off. It is so far off. I have learned to not lean on the hope of a cure too much...I try to focus more on teaching Lily how to LIVE with this and how to keep herself healthy always. I try to teach her how to make good choices. It's working...the kid won't eat fast food and wants to exercise. She thinks being too skinny is a sign of being unhealthy. She sees people that are grossly overweight and she asks me why they made bad choices. Teachable moments. It's a fine line.

Bottom line, I love my baby. I am proud of her. I am proud to be her mother. We are a team. We are closer than close can be. She is my hero.



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