Today. ..

Today is the day. Today is the day I celebrate a second birthday for my daughter. On a day like today, in 2012, she was reborn as a diabetic toddler. It was a surprise! But it did not catch us unprepared and off guard.

It has been 368 since we heard the diagnosis. And exactly a year since we left the hospital. It was intense! It was difficult! It was scary! It was life changing! It was a challenge! It was nerve-wrecking! It was all the things that only a parent that has gone through this experience can understand. It was the inevitable induction into a small group, a small club of parents that learn to live with this challenge on a daily basis.

A yearul later I am so happy and so grateful to realize everything is ok. My daughter has accepted her new lifestyle and has done wonderfully. She deserves all the credit for adjusting to such a radical change in lifestyle at such an early age. Even before she is able to read a book on her own, she speaks diabetes. I am proud of her efforts and of her self discipline. I am proud of the temperament and character she has shown in dealing with this.

So... Thanks to research! Thanks to carb counting! Thanks to FDA workers watching out for quality assurance! Thanks for nutritional guides all over! Thanks to diabetic educators! Thanks to the modernization of Medicine! Thanks for super thin needles! Thanks for 5-seconds glucometers! Thanks for measuring cups, and kitchen appliances, measuring spoons,  and nutritional labels! Thanks for a college education that includes a good science foundation! Thanks for a diabetic husband who has allowed me to delve deep into the diabetes world! Thanks for a father that is a nurse! Thanks for a mother who has dedicated her life to helping people that live with challenges and taught me my daughter's rights even before I could have a child!  Thanks for a wonderful staff at our medical provider! Thanks for strangers who become instant family because they know, they understand the shoes you wear everyday! And finally, thank God! Because it is only with the help of the Almighty, and the guidance of the Angels He sends that makes it possible for diabetes to be in our lives, without breaking us.

Diabetes might: rule our life; Run our schedules. Change our plans; Distance relationships;  Distortion the appearance of how things are; Interfere with desires...but it's here to stay,  and so will I. There is no return policy. No cancellation option. Therefore, since diabetes won't budge...neither will I!

MY NAME IS MELISA M. VALENTIN. I AM THE WIFE AND MOTHER OF 2 PEOPLE LIVING WITH DIABETES.  I LOVE THEM. THEY ARE MY LIFE. AND I WILL NOT STAND DOWN, DOWN PLAY OR YIELD MY POSITIONS. I AM IN THIS GAME TO WIN. I AM HERE TO KICK DIABETES IN THE BUTT!!!! THAT IS MY MISSION STATEMENT, UNTIL I HAVE FINISHED THE WORK GOD HAS FOR ME ON THIS, HIS EARTH.

I am tired but determined.  This is my place, my responsibility,  my duty,  my privilege. Moving forward is the path I choose.

To Love a diabetic is...

This poem is not mine...it was shared on the Diabetes Awareness site..but I wanted to share the feeling of it. Every parent with a diabetic child can relate to this somehow. :)

Poem: To Love A Diabetic

By Katherine Marple

To love a diabetic is to be a doctor. It means helping her to remember her medications. It means driving her for an hour to the only 24 hour pharmacy when she’s gotten the flu and can’t take the Nyquil in the refrigerator. Or driving her to the hospital when the simple flu turns into bronchitis and her blood turns acidic.

To love a diabetic is to be patient. It means knowing that some days she won’t feel good for no visible reason. It means canceling long term plans when suddenly she doesn’t feel well enough to go on a trip. Or waiting to go to bed while she injects her bedtime insulin.

To love a diabetic is to be a priest. It means consoling her when she’s tired and feels like she can’t do it anymore. It means listening and not passing judgment while she tries to figure out her new dosages and makes mistakes. Or, during those tough times, listening to her burial wishes – just in case.

To love a diabetic is to be a guardian. It means standing up for her when strangers accuse her of being a drug addict. It means discreetly asking her friends to keep an eye on her when she’s testing new medications and doesn’t know the reactions to her body yet. Or staying up with her through the night because she’s too afraid to fall asleep where a coma can find her.

To love a diabetic is to not be superficial. It means seeing her bruises as beauty marks. It means caressing the scars across her stomach. Or kissing her dry lips when she is hooked to IVs.

To love a diabetic is to be understanding. It means knowing that she doesn’t mean to get hot tempered when her blood sugars are too high. It means listening to her when she asks to start a family soon. Or donating time and DNA to sciences you don’t fully understand just because she asks you to and because it promises to cure her.

To love a diabetic is to be smart. It means researching new medications even though she never asks you to. It means listening to her explain her new findings in terms that aren’t typical language. Or making her smile when she desperately wants to scream.

To love a diabetic is to be selfless. It means going to a restaurant based off the carbohydrates menu instead of the atmosphere. It means going without dinner when money is tight because you can buy her medication with it instead. Or testing your blood sugar on her new meter to make sure it’s working properly even though you’re terrified of needles.

To love a diabetic is to be brave. It means keeping your chin up while she talks about those scary moments. It means not allowing her medical mistakes to colour your relationship with her emotionally. Or keeping positive spirits even though all of the websites and gatherings tell you she won’t statistically make it past her 40s.

To love a diabetic is not easy. It means putting her medical needs before any other finances. It means worrying every moment that she is properly cared for even when you can’t see her. And it means trusting her life in the hands of so many doctors who don’t understand the full complexities of the disease.

Thank you for loving a diabetic.

http://diabetesawarenesssite.com/poem-to-love-a-diabetic/?utm_source=social&utm_medium=dbsaware&utm_campaign=poem-to-love-a-diabetic&utm_term=20131111

That was then at 8...now it's at 16 without shame!

This morning seemed like it was going to be another regular morning. Most people my call my life extremely simple and uncomplicated. And of course, if you were to ask me it is just a cumulus of convoluted, entangled, and completely inseparable issues and considerations that are unstoppable. But, despite the dichotomy and differences, its all good. I know how it really is. So, another regular morning, right? Nope! Not a chance.

Commonly, as it is normal for people who hardly ever sleep, early in the morning, as I get ready to take care of the day's errands and my planned fun times with my daughter, I have to have a diet coke. I'm not going to lie. When I don't have my diet coke it is hard to stay on the top of my game. So call me dependent or simply a busted, tired mom, either way... I have to have a Diet Coke in the morning. So, here I am driving to my local Burger King to get my morning Diet Coke, and my daughter decides she wants to have breakfast at Burger King... But she wants to go inside! This immediately sounded like a tricky morning already. I was tired as usual and thinking about the logistics of having a three and a half year old diabetic toddler have breakfast at a local fast food. I knew this was just not going to work. But, because she hardly ever makes these requests, I thought it would be a good opportunity to give her the chance to learn how to do breakfast outside the home in an orderly fashion. We walked in, ordered, and sat down to wait for order. I noticed the lady sitting across from us  eyeing my daughter. She kept smiling. I could tell she was enjoying just watching my daughter and her faces.

As soon as our food was ready, I pulled out our glucometer and proceeded to check my daughter's levels. I could see kind of in slow motion, how this lady's eyes open wide and how she almost choked on her breakfast! Immediately she struggled to quickly swallow and look over and ask: " is she diabetic?" I answered yes. Immediately she smiled and said: "My daughter is too." Instantly, as it has occurred before, there was an instant bond. I did not dwell too much on what the lady look like or her accent or anything particular about that. We were just two mothers of diabetics who happened to bump into each other. She asked me how old my daughter is and told me about how her daughter was diagnosed at the age of 8. She told me the story of how she was in California and got a call that her daughter was in the hospital. As she shared her story, I realized how so many other families go through truly traumatic experiences to then hear a quite daunting an overwhelming fact.

We sat there, and spoke for about half hour as if we have known each other for years. We talked about legal issues, agreements and disagreements with schools, different options for homeschooling, different issues related to mood swings and puberty and hypoglycemia and not being able to know what's going on and children whose parents make them think they should be ashamed  they are diabetic... We basically talked about everything and anything related to diabetes. It was just so fun! She told me about how her daughter is now 16 years old and very active. Her daughter is proud to be different and normal at the same time. She shared some of the experiences her daughter has had a teenager, encountering classmates who were also diabetic but are too ashamed to tell the school. She told me about her daughter finding teenagers passed out in the bathrooms and in the hallways... Simply put, she told me about the tragedies that come after refusing to accept that it's okay to be diabetic.

We commented on this for some time. We talked about the influence teachers have on the kids at this difficult age. We talked about the influence parents have and how making their kids feel they should hide their diabetes, maybe because they themselves are ashamed, its just a huge disservice to the kids. She commended me for testing in public and for teaching my child, starting at a young age, that she should never be ashamed of her diabetes. She talked about how her daughter has thrived and has lived fully after her diagnosis. She talked about her daughter's involvement in sports and academic activities, and all sorts of fun things.

This was a stark contrast with my experience on Monday morning. I was pulling out the trash bins, since Monday is trash day. Our next door neighbor, who just moved into the house  next door, asked if the trash truck had already driven by. I talked to her about how unpredictable trash pick ups are and how is just best to take them up early in the morning and have to be ready for whenever the city decides to pick up the trash. We introduced ourselves, and talked about how there are no other kids close by. She told me she had two kids and that her oldest is autistic. I could see in her face how she hesitated, and hated to say that her daughter was autistic. I asked how old her daughter was, and she replied her daughter was 6... But then, with a very apologetic face said her daughter had the mental capacity of a one year old. I immediately felt her pain. Obviously, she is having a hard time dealing with the challenge of a child who I am sure is  absolutely special. I did not say anything about my own daughter. I thought that would be a good conversation over a playdate or over a plate of sugar free cookies. Right then and there, as I walked away to come back into the house, I realized how hard it is for parents to not be ashamed when their kids are different, but normal at the same time.

However, as I think about this, and having had more than 24 hours now to really think it through... I realize that it is the adults who completely miss the point. It is the adults, the parents, grandparents, aunts and uncles, cousins, the teachers, the caretakers, the preschool assistants, the principles, and tutors of the world, who completely miss the point. It's not the children! They don't know any different. The only thing they know is how to be a child. Unfortunately, this world is full of adults that are authority figures to children who work differently, and  pass their own prejudices and their own preconceived notions about what a person should be. Thus, in time, also completely ruining the opportunity this child might have to thrive. Shame!

Well, today I have decided, that there is no shame in being who you were sent to this earth to be. There is no shame in having a body that works differently. There is an infinite amount of shame when you do not see that part of the beauty of this world. There is an indescribable lack of vision when you try to instill shame in a child when you should be instilling in them the strength and courage to overcome the shame and stupidity of other people.

I am so grateful for both conversations! What a relief it is to see that other parents also share the same feelings that this world is better when we accept the differences nature imposed. There's no shame in accepting the differences that come naturally. There is no shame in having a normal life when your body works differently. The important thing is teaching our children to be comfortable in their own skins. To never ever apologize for who they are and how they need their lives to be. We ourselves need to take a stand in helping people understand that we need not be apologetic about the lifestyle that this life has asked us to lead.

So once again, I think about the scared 8 year old that was diagnosed 8 years ago in California. I don't know her. I will never meet her. I will only get two know this child from a 30 minute conversation, through the eyes of her mother. However, I am proud of her! I am proud of her accomplishments! I am proud of the example she gives the other children who need support to accept that they are just fine! I am proud of the stand she takes on behalf of my own daughter! I am proud to say that one day, my daughter will stand on the shoulders of proud, courageous, brave, and absolutely outstanding teenagers like this 16 year old! I am so grateful that, at 16,  she stands without shame, shouting to the world that she is perfect. Perfectly sweet! And perfectly happy to be 16 and diabetic.

Diabetes doesn't sleep!

For most parents, night time is the opportunity to recuperate from the day's work and the days stresses. Just yesterday I was talking to other parents about the lack of sleep that parents go through when you have little children. I remember back to the days when my little one was just a newborn. Those days were difficult, definitely an adjustment. However, with every day that passes, I believe that those days were easy compared to these days. I remember having to wake up 2 or 3 times to feed the baby and to make sure she is dry overnight. Now, I still feed the baby at night, its just that I feed her because of a hypoglycemic event. Thinking back to the days when I used to leave bottles of formula prepared in the fridge, so that I only had to warm them up, I realize that there was a way to prepare for that. Nowadays, nights can be quite unpredictable no matter what I do.

I hear fellow moms and dads talk about how tiring it is to care for toddlers and little children overnight. It seems like everyone has their own story! It seems like everyone has the same calculation. " I haven't slept since I got pregnant" or" I haven't slept since s/he was born." This is so frustrating for most parents. But I do assure you, that if you're lacking sleep right now just because of your children's age, start praising the Lord! Because they will eventually grow out of this.

Unfortunately, I cannot report the same for our specific situation. Why? Because diabetes doesn't sleep! Diabetes needs to be managed 24 hours a day 7 days a week, without hesitation. That means long nights pulling a graveyard shift after having to carry out strict and specific schedules during the day. Let alone, the fact that most children are active during the day. And then, there is a little detail that I have never developed the art of sleeping during the day. So right now, As I am dealing with a hypoglycemic event my daughter is having right now I am thinking that I would be so grateful to just be able to wake up to feed a bottle or check a crying baby. Or pull an all nighter studying for a test. But the stress of overnight diabetes management...that is in a league of its own. Only a parent with a diabetic kis knows the anxiety and stress of dealing with this. Because it IS a life or death situation, not a hunger or temporary issue.  You won't be able to let it go and my child will most probably never outgrow this.

I contemplate what the next few hours will be like, I think about the reason why I am up. I think about the fact that if I sleep my daughter could slip into the permanent sleep we call death.  So in my case, I'm not staying awake because my child is sick or because my child is crying because she wants a bottle of milk. I am staying alert so I can watch her sleep and keep her safe. When put into the right perspective, nothing is more important than making sure that she is safe. And the cost, its just sleep. One day, diabetes could sleep. But until then, I am happy to sacrifice my own sleep so that she can continue to live healthily. I wish this was came to our  my minds everytime we complain because our children wake us up due to a sick day or because our children have  nightmares.

Before our diagnosis, I was always awake because my daughter is a sleep talker and sleep walker. I never knew whether she was awake or sleeping. But now, I need to know that she is okay. Not because she might walk around the house and trip and fall, but because right now, today, we might have a silent traitor try to invade our life in her sleep. Now... back to the news, the glucometer and whatever I can find that might help me stay alert. Back to the graveyard shift!

Diabetes by proxy: Wham! And keep walking.

I have diabetes... Diabetes by proxy. My A1c is 5.4, which is absolute perfection. So basically, I don't actually have a physical condition or challenge that requires that I have a different lifestyle. However, I do live with 2 diabetics who have type 1. A lot of people call this the family members or the caretakers or... you know, you have seen the stickers on Facebook that says "I love someone with diabetes". I am one of those people.

So I decided to call that diabetes by proxy. Definition: This state of living does not require insulin shots. It will not be ameliorated with an insulin pump; you do not need to go on a specific diet, unless you want to. You do not need to exercise in order for it to get better. You do not need to avoid carbohydrates in excess. You do not need to wear a medical ID to help medical professionals assist you in case of emergency. However, brace yourself for this diagnosis. This special condition renders you "judgeable" and "correctionable" ( two words I just made up.) When you have diabetes by proxy, get  ready. Everyone will want to tell you about their grandmother who has diabetes. Everyone will want to tell you about their brother or sister or uncle or aunt who died from diabetes... Everyone will want to also tell you that you just have to feed your child more food. Others will tell you she just needs to have less medication in her body. The most horrible symptoms for diabetes by proxy is having to hear someone say: "She's  so cute! How can she have diabetes?"  The second worst symptoms suffered is having to hear someone ask: "Why?" Now, moving on to the very annoying but not as painful symptoms... Having to be accused of exaggerating things; Being classified as a helicopter mom because I am always watching my child. Being judged because " its not done that way" or "I am parent and I know how it's done" or "I am a real diabetic"...Oh, threre is absolutely no curw from it. It presents especifically chronic on those that are educated on diabetes and "speak" the language. Finally,  at the time of diagnosis, you feel like you have been run over a semi truck!

I will decide to cut short my definition, since I do have limited time and space. The point is that diabetes is my life. I have diabetes in my breakfast, at lunch, at snack time, at dinner time, at bedtime, during the night, at sunrise... And every time in between. See, diabetes is everywhere for me and in everything. There is no such thing as a break. The consequences of not paying attention, are also extremely severe. Luckily, I have not had to deal with those consequences. I do not intend to do so. What I do intent to do is continue to manage my diabetes by proxy with organization, planning, education, data gathering, lots a fun, lots of love, learning, play dates, etc.

However different my diagnosis might be, I still have diabetes. It is still something different I need to deal with. ( Instructions: read with annoyed tone) When someone tells me I have no idea what diabetes is like, I really wonder if they know what they're saying. I don't take the shots. I give them. My body does not have deficiencies in my pancreas. But I sure as heck have diminished energy. I carry a glucometer everywhere. I have to make sure there is enough food to be eaten during regular meals, snack time, and during hypoglycemic events. I can't afford nap time, "me" time...basically no time. Improvising is a pain in the butt. When balance is thrown off, I am the one who has to fix it. In essence, diabetes rules most of what I do 24/7/365. So if you don't think I understand what diabetes is, that I don't know what it feels like to be diabetic, you have got to check up on your sources.

No matter what others think they know, its just that...what they think they know. And in reality, most people, diabetic or not have no clue what its like to have diabetes by proxy.

So...when the time comes, stay put, don't try to make things "better" because you might be making them worse, step aside and let me do my thing. There is no prize for the inadequate,  only the price that I, the diabetic by proxy, pay.  The more obstacles i have placed on my path, the higher the price I pay. Excuse yourself and wham! Keep walking.

I am a lab "rat! "

Every morning I wake up to a very disturbed kitchen. And it almost seems like my kitchen never stays clean. I have pots on the stove. I have plenty of bowls and children's-size cups in the sink. I have got  teammate-style Coleman coolers on the countertops. Needless to say, I never seem to have enough dish soap and dishwasher detergent. Unfortunately, I have to confess that I go through dish sponges and scrubbing mechanisms like crazy. For a few hours a day, my kitchen looks perfectly clean.

If I ever had to quantify how long a clean kitchen in my house last, I would have to say that out of 24 hours a day, my kitchen is pretty much clean only about an hour a day. I also have to confess, this is probably one of the most frustrating things about being at home for the most part. Whatever you clean up now, gets disturbed within just a few minutes later.

However, a dirty kitchen in my house, means I am hard at work. It does not mean I'm creating new recipes or trying to come up with something mysterious that the world will consider a delicacy. It means that I am hard at work trying to make sure that I make balanced meals for my family. Now, let me not fool you. I do consume fast food. And I am NOT proud to admit that. However, the more I learn about my family's needs, the more I realize that my kitchen is my lab. And I am meant to be a lab rat.

Back in the day, when I was 16, I stepped into a real biology and chemistry laboratory for the first time. It was such an exciting experience! I remember the rush in my blood when I saw all the tools I was going to get to play with. I was so excited. I never wanted to leave. That day, the first day I stepped into what would be my future, I pledged that I would never leave the lab. I remember going back home a few weeks later and talking to my mother about wanting to be a scientist. To dedicate my life to research. I remember all the passion I had for science and biology and discovering things. It was like a brand new world had just been unveiled before my eyes.

I remember how those ideas continued to evolve. I really wanted to be a doctor. I wanted to be a pediatrician. No, I wanted to be a cardiologist. And throughout all this time, I just could not get enough of Science. Science was meant to be my life. That is what I was choosing, I just did not know it. And I knew even less about how truly my life would be complete engulfed and consumed by science processes and... A kitchen!

I have a small kitchen. It is nowhere near as big as some of the other kitchens I have seen. When we moved in 2012 I lost significant counter space. Let me just say, that I really really miss my counter space. It would just give me more space to pile on dirty dishes! :) I am completely joking. However, I am not joking about the fact that I do miss counter space. And why is that? That is because my kitchen, be my lab, is where I spend a lot of time trying to figure things out. I no longer wear a lab coat, but I can assure you that I wear an apron for a significant amount of time.

Having 2 Type 1 Diabetics at home, has meant that I spend long periods of time looking at labels. I also spend long periods of time looking for measuring cups. At this point, I have 5 sets of measuring cups for solids. I have got 1 digital scale, that I never lose. I also have various cups for measuring liquids. My cell phone, is an extension of my kitchen. I have multiple apps to help me convert from one unit to another. I have apps that help me to also verify the nutritional information for specific foods, that might be hard to get. I also have random numbers in my head... Like the fact that one ounce of bread has15 grams of carbs. I also remember that a ration of food that weighs 30 grams, also has 30 grams of carbs. Unfortunately, this is not applicable to all food! I remember that 1 medium sized french fry has 1 gram of carb. I know that 1 teaspoon of ketchup has 5 grams of carbs. I can go on forever! And I have no complaints about it. Like I did mention, I I wanted my life to be, at some point, monopolized by  Science. And it really is!

Mathematics! Mathematics and science! Mathematics do not trail far behind science. Tuesday night, I spent some time trying to come up with a formula for a protein smoothie that would help my daughter keep her blood sugars stable overnight. I remember just pulling out ingredients from the cupboards and of course my measuring cups. Afterwards, I realized I needed my scale ... Basically, all of my lab rat tools. And there goes the clean kitchen! But it was worth it! Math, science, and my kitchen helped me to come up with the perfect mix so that my daughter could have stable nights. I was so excited that she even drank it.

I am a lab rat! I love it! I get to play with toys all day long. I'm not going to lie to you, it is hard to be a lab rat. It is tons of work! But when I have my results, I am looking at my perfectly balanced food... With a balanced glycemic index, balanced carbohydrates, balanced proteins... And even though I cooked it at home, I know exactly how much is in 1/2 cup... I am proud. I am a proud lab rat. I am happy. I am a happy woman living with two very special people. I would not change anything about them. They are giving me my dream. They are giving me everything I always wanted.

So, many years later, after I decided to decline my plan to go to medical school, I am back to where I started. I am so glad I am back to square one! It has been 20 years now since I decided I would have a science-engulfed future. I remember the day in my general biology class where we discussed the Krebbs Cycle. I remember calling my dad and telling him how I was having a hard time memorizing the cycle. And I also remember his very prophetic and wise words telling me.. I must memorize this, because it is the basis of life. He instilled in me the idea that to understand the whole you really needed to understand the unit. This has stuck with me. I will be forever grateful for the fact that he was there to answer my questions. He still is!  And now, 20 years later, I can still remember exactly what the purpose of this important molecular cycle does...it Illustrates what my family needs.

So today, as I find myself back in my lab coat, in a sort of way, I am grateful for the opportunity to change my mind. I am grateful for the opportunity to have had parents that supported me in my goals. I am so grateful because they were not frustrated at the amount of money and time they had put into me getting ready to go to medical school. I am so grateful there was never a comment that was hurtful. We never looked behind. We always moves forward. And because of that, I got the greatest gift I would need 20 years later... Science in my life! My kitchen, my lab! And even though there are no rats, no specimens involved, there is one thing that might seem like a detail of life... but it is everything to me. And that one thing is my family's life.

This morning, again.. I woke up to a disturbed kitchen! And again, it was just a reminder that last night, we were at work trying to make things right . And as I finish this, and get ready to clean my kitchen again just to get it dirty again in a few minutes, I feel accomplished. I feel grateful. I even feel a sense of guidance from heaven above letting me know that I am exactly where I am supposed to be. I am who I was meant to be.  I am doing what I'm supposed to be doing with my life. I have no regrets. I have nothing but a feeling of being overjoyed by what I get to experience every single day of my life. Despite the difficult times that inevitably come, I am grounded. I am a established. I am inmovable in my purpose. I will continue to be a lab rat.... My kitchen will continue to be mostly full of dirty dishes waiting for a bath. That, my friends, is a promise!

This is too much (grind teeth)!

Yesterday, after we experienced our high because of our perfect 7 for baby's A1c, as I was walking out of the exam room, I heard a fellow T1D mom say: "There is just so much to remember!"

Her cry of frustration came after our doctor asked if her daughter had a medical Id bracelet. This seems like a very simple question. Immediately, as I was walking towards the nurses' station to wait for my written instructions and treatment plan, I thought... A medical ID? Who does not have one? How can a diabetic child walk around without a medical ID that states that the child has Type 1 Diabetes? And in one nanosecond , I judged my fellow T1D mom.  I immediately felt bad for her. I also felt bad for judging her at a moment when she was expressing frustration. I remained still and quiet by the nurses station. It was not my place to say anything.

This quick exchange took about 1 minute while our doctor signed the treatment plan to give me a copy to take home. And that brief moment, I realized that she is right. My fellow T1D mother was overwhelmed. I am sure her mental list of things to do, things to get, things that are absolutely imperative, things to pick up, things to... You catch my drift, right? How in the world can this be done? My doctor interrupted my thoughts, and asked: "Does she have a medical ID bracelet?" I rolled up my daughter's sleeve, to show that my daughter had a silver medical ID with the symbol of health warning, a jelly wristband that says  "I have type 1 diabetes", and finally one more jelly wristbands that has her name, her diagnosis, and my cell phone number. The doctor stared at me, and said: "You are too prepared."

I immediately said to her: "With these perfect children, you are never too prepared." She asked if my daughter was always with me and I answered that she was. She went on to say that it was important for us to remain prepared and organized as we have been until now, so that when school days roll around, there would be no shock from the change.

I walked away, still elates from our wonderful news. I got into my car, after jumping rain puddles with my daughter. It was a great moment. It was also a great opportunity to reflect upon the need for us to be prepared. I have heard many people say that preparation is not transferable. I strongly believe this is true. However, when dealing with situations that are so unpredictable, how can you prepare for the known and the unknown?

I have yet to find great answers that can be applied to everyone else. I can only answer these questions for myself and my daughter's needs. However, in a world where there is so much that needs to get done and so many things that need to be remembered, preparation and organization have never been more crucial for a stable life style.

Just right then and there I realized that in order to do anything in this life, we must be willing to learn. Willing to accept the inevitable changes that come to our lives. Willing to take the unexpected and run with it. But also willing to withdraw from the world when needed. We also have to be willing to enter into our own personal wildernesses all alone, armed only with faith and the knowledge we can do it. Throughout this time, I have been blessed with many offers of assistance. But but I have accepted that this is my wilderness to conquer.  My challenge to tackle.  And also my victory to experience.  I have been slowly prepared for this and I will not fear. I cannot fail. I too experience feelings of being overwhelmed...but nothing overcomes that faster than a smile from my little one. Yes! This is too much, but is it also worth everything!

Lucky number 7.

There are movies, superstitions, urban legends, etc. about lucky number 7. There are 7 days of the week. A lot of people think 7 is a number of perfection. No matter what the number 7 might mean to you, 7 means the world to me!

7 equals perfect control. In the world of diabetes, 7 is extremely desirable. And we found out today, that we hit lucky number 7. Our last check up, we had a 6.5, which is great,  just a little low for a toddler. Our goal was to hit lucky number 7. Today, we accomplished that's goal.

Our daughter's A1c ( this gives you an estimate of the stability of sugar levels in your bloodstream for the last 3 months) is 7!

I am so grateful for my daughter. I am so grateful for the help I get from God in helping her through changes and challenges at this early age of her life. I am so grateful, that I was raised with the knowledge and the confidence that I can accomplish my goals as long as I am consistent in my efforts and focused on my plan.

Today, I feel more accomplished and happier than the day of my graduation at BYU. Even though it was hard work to write a master's thesis, this accomplishment is so much more significant than that and that any professional accomplishment I have ever achieved.

In obtaining our lucky number 7, I feel the sense of peace, of knowing that God is close by and watching over us. I feel the sweetness that comes from confirming that the path we are taking is the right one. I am right! I feel the excitement that comes from knowing that health is preserved. I feel the emotion of the future, knowing that my daughter can also join the ranks of healthy Type 1 Diabetic mothers who manage to preserve their health enough to have their own children. I feel the blessing that comes from possibilities... From the possibility of maybe thinking that I am protecting the next generation of my family. And I feel the certainty that comes from knowing that I as she continues to learn to live a healthy life, she too will be invested with the knowledge and the determination to assist any of her own children that might face this challenge in this life.

Too many people talk about a cure. Too many people talk about finding a special way to fix something that so many people believe is broken. I understand. Different in this case is a great challenge. It's a chronic disease. I would be overjoyed at the accomplishment of the development of technology that would help my husband and my daughter live an easier life. However, today, I feel strongly that come what may, there is a bright future out there for my little 3 year old daughter. There are choices! There is healthy living! This all means there is a high price to pay as well. As long as my daughter is so young, I will happily continue to pay the price that needs to be paid for her health. I pray to God, that she too will be able to develop the desire to pay the high price necessary to be healthy. God knows, and the people that know me the best know, that I I'm determined to continue to hit lucky number 7. I pray thar my husband and I can watch her bloom as we age together. HOPE! THAT IS WHAT LUCKY NUMBER 7 MEANS TO ME! PERFECT HOPE.

T1D Mom, Autistic Mom, Down Syndrome, etc... we are a force to be reckoned with!

Sundays! I love Sundays. It is my favorite day of the week. I love going to church with my family. I love the time I spend with all the children that go to the same church I do. Its a challenging day. It means that along with a few great women, I get to hang out with 23 kids, sometimes more. Sundays remind me, that life is bigger than my own challenges. It also reminds me that I am NOT alone.

Today, I had a wonderful chance that I hardly ever get. I had the chance to sit and chat with some amazing women who have perfect children with different working bodies, like my 3 year old. Their kids are not Type 1 Diabetics, but they have, each one of them, their own challenges. I enjoyed to  watch them play all together, in their own way. I could not help but feel completely overwhelmed by how perfect they are. I was amazed and so happy to see their progress. I love to see them being a part of a group instead of being isolated. I was so proud of their mothers and their efforts and everything they do on a daily basis to help these children progress and grow at their own pace.

Here we were, women from different countries and different walks of life talking about genetics and environmental issues that impact our children's health. In addition to being there to help our children learn about God, it was more like we were having a summit, talking about things that were very important in our own lives.

I thought for a second about how the world discounts full-time mothers. Or how they even judge those that have jobs in addition to having to race their children and deal with the differences of how some of their children might learn. I felt small compared to how these women work hard each day to help their children be healthy and happy. At the same time, I came to the realization that mothers of children whose bodies and minds work differently, are without a doubt, a force to be reckoned with. I was amazed to see how in fact education and information is processed differently through the eyes of motherhood. I realized that there is no other spirit that is stronger, than a mother who has a vision for their child with different needs.

I am so blessed by these women! I am so happy they are in my life. I am humbled by there efforts. And I am strengthened by the faith. I am so lucky that I get to spend time with them. I am so grateful  to call them my friends.

Despite the fact that all of our children are different, I feel there's a special bond between us. So today, Sunday, is as beautiful as any day can be. However, it is a magnanimous day  because we reconfirmed that we are not alone. We are not weak. We are not ignorant. We are strong. We are our children's  best advocates. And because of our vision for our children, they will grow up to be productive adults in our communities.

To you dear friends, who share the challenge of raising a perfect child that works differently,  I say to you: thank you. Thank you for your example. Thank you for the strength of your actions. And the faith your words convey, even when you say nothing at all.

Less can be much more fun.

Hanging out is so fun! Going places, is so necessary. We have learned that just because we have 3 year old who also happens to be a Type 1 Diabetic, doesn't mean we can't do the things we want to do. What it does mean is that we have to do it under the right conditions and surrounded by the right environment.  Many times I wonder why outings and fun times workout and other times it just doesn't. Sometimes, outings or interactions that are supposed to be fun filled, can turn into a disaster! I am learning that there is an exact formula to have good experiences. I can always prepare myself and my child for whatever is in front of us. But I am also learning that I cannot prepare others for it. I'm learning that I cannot control the children or the adults that are part of our experience. So because I cannot control anything but how I prepare my daughter and how I prepare myself, I guess the only thing I can do is make sure that I do my best to help others understand.

At times, trying to educate others has been the most frustrating experiences I have had. I have to admit, that helping children understand has been my favorite part of our 10-month journey. Adults...not so much. Well, they are hard.

But, to continue the positive note that we have had today, we have to reconfirm that a day at the zoo, the aviary or any other place can be a fun filled experience. As we continue to delve into this new lifestyle, I continue to discover the things that we can do happily without too much worry.

And yet today, was another experiment, that reminds us that preparation and a good environment is all we need...and sometimes less is  definitely all.

What is wrong with her?

I have lost count how many times I have heard this question. What is wrong with her? I constantly have to give an explanation that there is nothing wrong with my daughter. Her body just works differently. I have heard many people refer to her as a sick child. And I wonder really, if they're right. Most of the time, I tell myself that she's not sick. And I have also wondered if, at times, this is just me, as a mother, in denial. However, the more and more I get educated about my daughters condition... I realize that there's really nothing wrong with her. Her body truly just works differently. I times it seems like the whole concept of "working differently" is too much to bear for some. I think it is also too much for other people to digest.

But as time has gone by, I have come to the understanding that it is not something that I should be worried about. How she is and who she is, is just how things are meant to be. A few months before my daughter was diagnosed with Type 1 Diabetes, I learned, the hard way, that it is useless to try to understand why things happen in this life. Most things that really shock us or simply challenge our vision of who we are and what our lives are, are... nonsensical!None of these things, should not happen, according to us. Therefore, for a while now, I have learned that there is no point to trying to figure out the formula of why things happen and when they happen.

Just yesterday, I had the opportunity to answer this very same question that I have been answering for 10 months now. What is wrong with her? And I love the fact that it came from a child. This child, who I will call Mary, for privacy purposes, is a girl that I absolutely love. This is not the first time a child that I love asked me this question.  I have thoroughly enjoyed explaining Type 1 Diabetes to children, in the most basic way. What is wonderful about this opportunity, is that there is no guile, there is no ulterior motive, there is no discrimination, there is absolutely nothing but pure curiosity to understand the reason why my daughter was being poked on her finger. I love these opportunities! I also love the fact that, because I am surrounded by so many children on a regular basis, I get to have this conversation with them. As a mom, I'd like to feel like I'm educating my daughter's future best friends. As a member of this "exclusive community", human being, and parent and spouse of Type 1 Diabetics, I would like to think that I am teaching and educating the next generation. For so long it seems like there was so little information out there available to the people around us, and that is the reason why so many people wondered... What is wrong with daughter? I have learned to easily explain that there's small part of my daughter, inside her, that needs a little help. I would like to think that most of us think there's nothing wrong with getting a little help once in awhile.

So, nowadays, when I am faced with the questions about the kind of help my daughter needs, and why it needs to be in the form of a poke on her finger, an injection on her bum, I feel at peace. I feel at peace knowing, that she has the help she needs; That because of those pokes and injections she will be a healthy adult. And that the fact that she has to be poked, or injected, has absolutely nothing to do with her value for her capability.

And finally, when faced with the question what is wrong with my daughter? The only thing I can think of is to say: nothing. She is absolutely perfect.

We shot ourselves on the foot! Then, I repented.

Sunday. Walgreens, Rexburg, Idaho. Cough drops. It was just an ordinary Sunday on vacation. I just needed cough drops, immediately! I did not expect to have a trip down memory lane, a history lesson type of conversation, and huge realization.

The pharmacist at the store was wonderful! He looked like he could be my father. He had  very white hair and a big old Kool Aid smile on his lips. He did not seem bitter or mad at all about the fact that he had to work on a Sunday.  Our conversation started with my question: "would he please charge me for this?" I was only avoiding having to pay at the front cashier. We had a big conversation about how he did not take money or see money in a long time since he got married. And ended up with a conversation about feminism. It was great! After 30 seconds of  exchange, he proceeded to tell me about how feminism, back in his day, with all about burning bras and protesting on campuses. Brigham Young University-Idaho is just down the street. I realized how disconnected from it all he was. I mean, women get doctorate degree in feminist studies!

We briefly exchanged about the theory. My final comment to  him was: " I think we shot ourselves on the foot. But, I did repent." He thought it was funny and asked me what I meant by that. I explained that I think we should have been happy with simply wearing pants, voting, and the rights to an education, which would  obviously lead to participation in the workforce and any other scenario of society. He laughed out loud. I looked behind and realized there was a young girl behind me. I do have to admit that I kind of liked making her a little bit uncomfortable. I was hoping that would mean she with think about our conversation at some point.

He asked what I meant about repenting. I explained, that I had decided to stay at home with my child and abandon my professional career. I am 35 years old. And I made that change after over 12 years in the workforce. It was an easy decision. And life helped me make it. Of course, I am blessed with a husband who supports me and who also believes that my place is at home with our child. Luckily for me, I never had an ego nor the desire to spend my productive life in the workplace. During my early years, I took advantage and I used my time wisely in completing graduate studies and in learning everything I could. This made a great difference in our life. That does not mean that others should do the same same.

When our daughter was diagnosed with Type 1 Diabetes, I was already at home with her. We had an established routine. We had been working towards making the appropriate changes. Before deciding to stay home full time, my husband and I worked opposite schedules to make sure that one of us was with I daughter at all times. I worked a few hours 3 times a day, which was great in helping us to make sure she had stability. I do have to admit I hated to leave her.

Life could not have given us a greater gift than to be ready to face the challenge of a diagnosis that we had no clue would come.

Nowadays, I join many other mothers and former full time professionals in the ranks of full-time motherhood. However drastic the change might be, I think it is the best desicion my husband and I have made. Despite the fact that sometimes I find myself with a toe or two in the professional world, I have to admit that my diabetic child's world is my favorite place.

Once in awhile I find myself wondering what would have happened if I wouldn't have decided to stay at home with my daughter...what things would be like right now for us. I do not like the image that comes to my mind. Therefore, the last almost 2 years of my life have proven to be the most fulfilling years until this point of my life. However satisfying and fulfilling professional work has been in the past, right now I love to enjoy the subtle successes we have on a daily basis. Some people have actually asked me how it feels to be at home instead of being out and about in society touching lives through my profession. Every single time someone askes me this, I wonder if they really understand the magnitude of the work I am doing at home right now. Instead of changing a family's life, I get to change my own  family's life. As I wrap up a project, I still savor my past life. It feels good to experience that once in a while. However, I am so grateful for the life I have right now. I would not change my little family, their diabetes, or any of my sleepless nights or restless days for a paycheck.

So, all of this from a 3 minute conversation with a pharmacist. I'm so happy to realize that yes women have shot themselves on the foot. But happier to realize that I respented. Don't get me wrong. I admire the women out there who are dealing with the duality of a woman's life. It is really hard to balance. It can be the most overwhelming feeling. But repenting. ..changing....that was for me! And just like that, I unshot myself...and became me.

10th on the 11th

In just one more week, we will be thinking about the events that happened in 2001. It will be September 11th all over again, and we will all remember the tragedy that we all experienced. To me, September 11th will take on a new meaning this year! The 11th, we will celebrate the 10th month anniversary since our daughter's type 1 diabetes diagnosis. We're going to be hitting the 10th on the 11th.

When I think about November 11th, many feelings come back to my mind. However, the common denominator throughout the last almost 10 months of our lives, has been peace. Despite the challenges, we have tackled this head on. And the walls of our hearts have been challenged, shaken, but have not crumbled. In fact, more than ever, I feel like few things could challenge my heart to the point where it will break and crumble.

Without a doubt, I am NOT the person on the hot seat! My 3 year old daughter has been the one riding the wave based on insulin, needles, test strips,  etc. It has been a ride. It makes me think of a pipeline. How it can feel like it's a never ending tunnel. I'm sure that surfers, when they are running the waves, they feel like the pipeline is never going to end. I wonder if in the mist of the pipeline, they think about the darkness and the lights and the contrast between one another. I can tell you, for sure that the last 10 months have been filled with those contrasts of light and darkness. However, we have always been filled with great peace and light in our hearts.

Most recently, I was asking my daughter to come close to me so that I can give her her final shot for that day.  I was so blown away when she said: "Thanks for my shot mommy!" That moment, I felt like we had really turned a corner. It was incredible! I was just so amazed at the fact that she is grateful for her shots. I don't think she completely understands what it all means; she's too young. Meanwhile, I do feel like in the last 10 months we have  built a strong and firm foundation that she will continue to build on herself.

In the last few months, she has continued to adjust. I have heard her say "no thanks" many times to food. I'm so proud of my little one! I am so grateful for her. And now, with the 10th coming on the 11th, I feel like I love her more than ever.

Everyday that goes on, we drive on simple concepts of life. These are: structure, consistency, measuring, adjusting, quiet times, much nourishment, talking to each other and communicating, making sure we stay on time, diligence... All of these simple concepts rule of our life. Diabetes sets the tone and the pace in our lives. To many people this might sound like the most dreary picture, but we are so grateful for them! They keep us in line. They keep us safe. They keep us healthy. It is just incredible how much of a difference we feel when we are making an effort to let consistency and diligence rule our life. Structure and scheduling has never meant the world to us until the last year. I am so grateful that, before we countered this great challenge, I was able to learn these skills and to embrace them. I feel so lucky. I feel so blessed.

Welcome 10th! We are waiting for you.

Healed by a Stranger

Still thinking. Still amazed! We went to Mirror Lake in Duschene County, Utah and stopped in the picturesque town of Kamas. Walked into Subway looking for food and found healing. Little one was running in the lobby and husband ordering...Me? Trying to catch her for a finger poke. Instantly, this lady who had already commented on how cute my little one was, literally ran to me and hugged me. A total stranger. In a place I had never been before. I will probably never see her again. She immediately said: "I have two! It's hard. But it will all be okay." And just like that, she gave me the gift of healing, of knowing that as dark and alone my personal wilderness seems, God sends angels. She knew! She knew because she had lived through this unimaginable journey that only the mother of a diabetic toddler understands. It was not: "I cant imagine how hard it is! Or I am sorry." Or some demeaning comment paraphrased or masqueraded with empathy. She didn't react like my daughter is a victim or is damaged. She understood, had lived it and gave me hope. Her youngest was 3 when he was diagnosed. Her oldest one was already in his late teens early 20s. I told Siani: "Look! We found a part of our sweet family! More sweet people with magic numbers!' This lady, who felt like she was a long time friend, crouched down with open arms to hug my little one. Siani ran into her arms as if it were some kind of reunion. She held her while I checked Siani's blood sugar levels. Siani smiled at the young people accompanying this angel that had just touched our life so deeply. She walked up to them to talk to them. What a serene, peaceful, joyous interaction with a spice of euphoric emotion...we knew! It felt like we had been engulfed by a bubble that only we understood. We spoke that language. We "got it"! From the ordering line, Jared, my husband lifted his insulin pump to let them know he was "my other one." It felt like a joyous reunion; like we had known each other before and  had been separated briefly. 

Life lesson learned: Healing comes in different ways and from different places when we MOST needed it...it comes and will continue to come.  Our battle against physiological and emotional challenges will not cease. We will continue to move forward and onward with Christ by our side. But it made me feel so privileged to know that God had sent me a living, palpable, solid witness that He knows me. He has me in his perfect heart. He watches over me. He knows when I need a fellow imperfect being to serve as my ministering angel. An angel that knows! I know He knows my struggles. He chose to remind me that He has other children that face the battle with diabetes, just like my baby girl and my husband. He has answered my heart's prayer that He chooses some of His children to continue to live in faith and inmoveable acceptance, looking towards Christ, who knows all of our pain. He knows! He sent her to remind me that He does. 

I will never forget this lady and her embrace that touched me straight to the marrow of my bones. Nothing like an "I know" from someone who actually does. What a contrast with the empty comments and failed attempts to make things better. What a contrast with the confusion the world and the worldly offer. What a witness of peace and an invitation to allow our will be swallowed by His. We will be okay. We will grow and be strengthened through this weakness. But we will, because He who knows all pains, touched me with his healing hands through a stranger who I know now was my personal ministering angel, on this day. 

Our Story

Its YOUR choice!

Our Story


My name is Melisa. I am from Puerto Rico and I live in Salt Lake with my family. And this is the story of how our life changed. It all started on August 28, 2004. That is when I met Jared. Getting out of my car, I saw it for the first time, his catheter. I asked and he responded it was his pump…his insulin pump. Jared has been fighting Type 1 Diabetes since he was 12. Fifty months later, we were married in Salt Lake City, Utah. Shortly after, in March 28th 2010, we were lucky enough to receive our first and only child. She was a blessing from heaven. A miracle through grace. She was a swollen, mid-sized baby that represented hope. She was here and so was our future. She was and still is so beautiful. We named her Siani Aintzane, which means woman full of glory. She sure felt like she was giving us a glimpse of what God’s glory was like! She quickly taught us many things that we never thought about. She has not stopped changing our lives. Every day is an adventure with her!
Our biggest adventure started in November 2012. We had started our toilette training and Siani was doing well. I had started to encourage her to drink more water to help with “practicing”. She did well. Then she started to be too enthusiastic about drinking. She wanted water, juice, everything she could get her hands on. It seemed too much to me. Because of a cold she had, I didn’t worry too much. Things went back to normal after a few days. Then she started to get another cold and started binging on drinks again. This time, only water. Because we knew that there was a small possibility that she would later on have to deal with Diabetes, her diet has been very balanced. We did not avoid letting her enjoy goodies, but we never gave sugary things like sodas, no excessive candy, no excessive cookies…etc. So I had mixed feelings. She loves drinking water but it was a lot. I kept track of her water intake and it was as much as an adult. This started to be a red flag for me. I could hear alert bells ringing all over my head. The next day, she kept drinking even overnight. She wet her bed because her night diaper could not hold all the liquid. The second night she did this, we got a meter and tried to test her blood sugars. She refused. She fussed. She kicked and screamed. There was no way to make her. It was 2 AM and we tried for so long…we were going to be up the next day to go to church so we let it go. I also did not want to make the situation more traumatic. The next day, after church, the drinking started again. I fed her and got in my car and drove all around Salt Lake County looking for Diastix to check sugars in her urine. No one had it. I could not believe it!!! Rite Aid and Wal-Mart offered to order it…and get it in three days! I kept saying, I need this NOW. After two hours, I settled for ketone sticks. Came home. Made her go potty, tested her ketones…three times. Then came the dreaded result. Her ketones were…large! There was no mistake.
We struggled to get her to the only clinic that was opened on Sunday night. We spoke to receptionist and here she was, taking her time. As I am telling her that she has large ketones, that her sugars must be in 400s and she is still taking her time. Once we got in, I explained and the doctor was like…”kids get ketones when they are sick”. I was like…are you kidding me? As he takes his time, all this information is running though my mind: ketones, frequent urination, extreme thirst, her mood swings and tantrums…it ALL sounded like onset. She was a trooper when they drew her blood…no poke, drew three tubes of blood. My little ray of sunshine is solid! We comforted her and she was right back to wanting to drink and look at books. A few minutes later, the doctor came running down the hallway screaming…”It’s not good Dad! When I heard that, I started to get our things together. I just asked the number? 5??. I just heard that is was in the 500s. I blocked out the rest. I leaned against the wall…ad asked “Is she in DKA (Diabetic Ketoacidosis)?” She was not. Thank God! She was not hyperhydrated and we were going to be okay…right? We rushed to Primary Children’s Hospital. It was snowing cats and dogs! Those 10 or 15 miles were the longest of my life. They were waiting for us. The doctor had called them. They got started working with her. She was in the 600s by the time we got to the hospital. Those were hard days in the hospital. Huge changes. Many doubts going through my mind…how was I going to get her to let me check her an dose her alone at home. So many questions…too many questions. Not many answers.
But we named right this little one…she is full of glory. The dictionary defines glory as: Great honor, praise, or distinction accorded by common consent; renown; Something conferring honor or renown; Majestic beauty and splendor; resplendence; the splendor and bliss of heaven; perfect happiness. She is just that. Beautiful, praiseworthy, a piece of heaven and a wonderful example of being happy and accepting no matter what.
Then officially, it was said and decided. She has Type 1 Diabetes. At 2 yrs. 8 months a part of her life is decided. We are spectators and facilitators. We know what God has a plan for her. There is a reason for this.
We are taking one day at a time. Planning ahead. Staying on schedule. Being as smart we can be about all the details that we need to be aware of. Above all, we have been greatly blessed. We realize that God’s hand has been present in our lives and has helped us every step of the way…every day. I feel like I was lucky because with pre-med under my belt, good understanding of the disease and living somewhat aware of the possibility, we caught it before Siani went into a crisis. We know that is not common. Usually a crisis is what triggers the diagnosis. That was a huge blessing from God all on its own.
We share our diagnosis story, not trying to recruit pity party goers or to get attention. We share our story for healing, for awareness, to build a sense of community, to help people see that it is okay.


Our daughter is our greatest accomplishment, our greatest gift. Her diabetes is also a trial that we are willingly accepting. However hard it is at times, accepting God’s will and this challenge is an opportunity to grow. There might not be a cure yet, but we are beating this every day, with every reading, with every meal, with every good habit that we build, with every opportunity she gets to learn bit by bit about what she needs. In sum, life just got sweeter!
Melisa

Wife of J, TD1 since 1989
Mom of S, TD1 since 2012, Diagnosed at 2 yrs. 8 mos.

"Courage is NOT the absence of Fear. It is the sense that something else is more important. The fearful will never live a day, not one day in life."

"There are people who make things happen; there are people who watch things happen; and there are people who wonder what happened. To be successful, you need to be a person who makes things happen" James Lovell, Astronaut