Tuesday, November 2, 2010

The New Normal

Getting accustomed to "new normals" are a part of life. There are pleasant and unpleasant changes throughout our lives. There are changes that in the beginning someone believes that they could never get used to, yet later realize that it was the best change that could have ever happened for them.

In January of 2004, I was looking forward to a new year where I had two sons in school, I was searching for a daycare for my youngest son to attend, and I was applying to the local college to resume my education. I was still married at the time, and my husband had returned safely from Iraq and no deployments were planned for about a year. To me, the future was looking bright and I was content with where I was.

In mid-January, I began to feel tired, had dizzy spells and felt like I had a cold. On January 21, I stopped living in denial and I took a pregnancy test. The positive line came up before the test line did on this particular test. I was washed over with feelings of fear and sadness. I was happy to only have 3 sons. Sebastian was reaching an age where I was comfortable with leaving him in someone else's care while I went back to school. Being pregnant was not going to allow me to go back to school. I was anxious about the morning sickness. I have "all day for most of the pregnancy" sickness. Sebastian was very sick when he was born and I was terrified that was going to happen again. My own health degrades as my pregnancies get close to term so I was also nervous about that. The shock I felt with this positive pregnancy result hit me harder than when I learned that I was pregnant with Hawke when Alex was 5 months old. Alex and Hawke are not even 13 months apart. They missed that milestone by 5 days.This was a surprise pregnancy that I had a difficult time getting overjoyed about.

Deacon fully entered our world at 11:59 p.m. on September 9, 2004 with his usual element of surprise and on his terms. My family's and friends' worries that I would not bond with him were unfounded. I wanted to hold him as soon as the nurses would let me. I was a mother hen when he became jaundiced, slept longer than I had seen with his brothers, developed a cold when he was one month old and got diaper rash. It was pretty clear that I could not imagine life without having Deacon in it. Deacon with all of his joy for life has completed this family. I think even his brothers would agree.

On March 17, 2007,  I was met with another new normal. This was a new normal that I couldn't fully comprehend even though I had been introduced to diabetes before Deacon's diagnosis. I was overwhelmed with learning how to carb count, keeping to a strict schedule, what the numbers really meant, drawing up insulin and injecting it, and how to use the glucometer. Over time, I learned that there was a need to still test Deacon during the night. Through trial and error I learned what foods caused what reaction and how to combat them. I am one of those parents that will prohibit a particularly evil food, such as pop tarts, pie or blueberry muffins. It took a few months to accept it and get used to the new normal. Like newly diagnosed parents, I never thought that I would.

I have ridden the diabetes roller coaster for 3 1/2 years now. I have gone from the new normal of giving injections several times a day to using an insulin pump. I unconsciously look at the clock to see if it is time for Deacon to be tested by his nurse. I grab the "emergency" phone on my way out the door without fail. I panic if I cannot readily find the kit in its usual places. Carb counting is so ingrained in me that I will carb count everyone's meals. I occasionally feel the pull to test all of my sons and bolus their meals too. My body is so accustomed to waking up at 3 a.m. that I really do not need my alarm set to ring anymore. My nightly ritual is to turn off lights, lock up the house, put the dog in her crate, and grab the kit and cell phone off of my desk as I walk upstairs. The first stop I make at the grocery store is the pharmacy area to get more glucose tabs. I spend 5 minutes every weekday morning packing Deacon's snack and writing his morning BG, what he ate for breakfast and the carb counts, and what he was bolused in a book that goes to school for his nurses. In the afternoon, the first thing I do is read that book to see what his numbers were like at school. I am used to the new normal of diabetes and, like having Deacon, I cannot imagine my life without it either.

As I write this though, there are families who had gotten used to the new normal of the diabetes diagnosis and are now grappling with a different new normal. It isn't the new normal we want for any of our families. These families have experienced what most families of children with Type 1 diabetes fear. They have inexplicably lost their child to diabetes. Like most members of the diabetes community, I am at a loss for words. I have sat at my desk dumbfounded at the news of another child being taken way too soon. I have cried. I have hugged Deacon tighter and have stepped up my own vigilance in response to the news.

My thoughts, prayers and tears continue to be sent to these families. I cannot begin to completely imagine how they must feel, but I do my best to be there for them in spirit and online words as much as possible. 

Sunday, October 31, 2010

A Halloween Tale

Once upon a time, there were two little boys. They were 3 years and 2 years old. It was becoming apparent to the parents of these sweet little boys that they were getting old enough to enjoy the spirit of Halloween. But how do the parents handle Halloween without participating in the custom of trick or treating?

On a perfect autumn evening, a week before Halloween, there was a knock at this family's door. The mother opened the front door and was greeted by nothing but the crisp autumn air. On closer inspection she noticed a note tacked to the front door. The note read,

"Dear Troubled Parents,

I have the answer to your Halloween dilemma. Not all boys and girls should receive sweets and treats. Too much candy can be harmful for the health and growth of your children. I give help to parents who still want their children to enjoy Halloween but not have all the sweets that are being passed out. If you leave a lighted jack-o-lantern on your door step at dusk on Halloween, there will be a surprise for your children once the sun completely sets.

Signed,
The Farmer"

The mother was puzzled by this. She brought the note to the father who decided to accept the offer. What could it hurt by leaving a jack-o-lantern out on the stoop?

On Halloween, the little boys helped the mom carve a pumpkin. They placed a candle inside it and placed it outside on their stoop. When the sun had completely set, the mother quietly peaked outside and saw two small presents next to the jack-o-lantern. Each present had a tag that read, "To...." and "From The Great Pumpkin." The little boys were delighted to receive a new toy. The oldest of the little boys got a new portable train set while his younger brother got three small airplanes.

In time the family added two more little boys but the Great Pumpkin still delivered a present for all the boys in the family, including the new additions. When the boys were babies, they would get new blankets or pacifiers in autumn colors. As they grew, the gifts evolved into Legos, action figures or games. One year, the farmer heard how much the family wanted a family dog so the Great Pumpkin delivered a small puppy.

It became clear over the years that having the Great Pumpkin deliver a small gift for each child was better than dealing with the candy amid the children's food allergies.  When the youngest was 2, he was diagnosed with diabetes. That upcoming Halloween, the mother was happy to not be going crazy trying to count carbs and injecting insulin.

For a few years, this little boy was happy to get presents from the Great Pumpkin but he felt that he was being left out of something even more fun. One year he said to his mother, "I can go trick or treating. I don't have diabetes no more." Despite hearing his older brothers saying to him that the Great Pumpkin visited before he had been born, he kept insisting he needed to go trick or treating.

A year later, the mother still accepted the offer of the Great Pumpkin to drop off the gifts. She also took her son, who was now on the insulin pump, and his older brother trick or treating with the neighbors. Her son had a blast, and the mother was grateful that his blood sugars stayed normal. The mother did get a sternly worded letter from the Farmer saying that the Great Pumpkin does not deliver to those who trick or treat. She let her children know about this, and has since given them the choice to trick or treat or to get a visit from the Great Pumpkin. After that first round of trick or treating, the three oldest children decided to get visited from the Great Pumpkin. The youngest boy still chooses to go trick or treating even though he has claimed that it is a lot of work.

The mother has set some ground rules for the child that way his blood sugars stay level and she keeps the gray hairs and wrinkles away. She only lets her son have 5 pieces of candy a day for a week. Once that week is up, the candy gets disposed of. He also can only have the candy at a set time during that week. This helps keep the overnight numbers level. The fast-acting, artificially dyed candy is immediately given to the school for their candy jar. This keeps her other sons, who have bad reactions to artificial colors, from eating them. A lesson the mother sorely learned from the first year of trick or treating. The m&m's are stealthily placed in a top secret hiding spot for the mother to eat at her leisure.

With the ground rules in place, the mother woke up to another beautiful Halloween. Her sons and herself have carved their pumpkin and have placed it on the front step for dusk where it sits beckoning the Great Pumpkin to deliver the gifts. The youngest little boy anxiously awaits for the clock to read 5:00 where he will go dressed as a tiger to his friend's house to trick or treat. And the mother quietly waits to hear the shouts of glee and to see the wide smiles on her sons' faces when they see what the Great Pumpkin delivers or the treasure trove of candy her youngest son comes home with.

Happy Halloween!

Sunday, October 24, 2010

3 A.M.

It is 3 a.m. The kids are asleep and rolled up in their blankets in their beds. I have a cat wandering the house waiting for me to feed him. The other two cats are asleep on a bed in my room which I am beginning to call "The Dorm." The dog is in her crate dreaming about whatever dog's dream.. I am at my desk drinking honey vanilla chamomile tea.

It is 3 a. m. and the only sounds to break the silence are the dog's snoring and the desk radio softly playing classic country music. The only light that is illuminating the middle of the night darkness is coming from the computer monitor.

It is 3 a. m. and this has become my routine. Most nights at this hour, I can be found here at the computer or still in bed watching television or reading the book I need to catch up on.  I take in the peace of the house and use it to my advantage. I will more than likely be awake until 4:30 when I will turn off whatever electronic was on and go back to sleep until I hear the sounds of a child being awake. If I am lucky I will get another hour and a half of sleep.

It is 3 a.m. and many would wonder why has this mother made a routine of being awake in the middle of the night. Is the chaos and noise of raising four boys by herself driving her to find quiet for herself when they are asleep even though this costs her sleep? Does she enjoy the night time hours and feels more comfortable to be awake at this hour? Is she an insomniac? The answer is....

It is 3 a. m. and I just got jolted awake from much needed sleep by an alarm that is forever set to 3 a. m. that way I can test my 6 year old son who has Type 1 diabetes. I was woken up and I had to fight through bleary eyes, the warmth and softness of my bed, and the comfort of my cat sleeping next to my pillow to roll over and force myself to stand up. I grab the kit off the nightstand between our beds and place it on my bed to open it. I can feel the bed warmed from my body heat cooling off in the night air as I get the meter ready. I turn, take two steps and lean over the bed rails to find a hand. I place the hand in front of the meter's light, use the lancet to produce the necessary amount of blood and get the all too familiar test started. I hear the beep letting me know that the blood was accepted and the 5 second countdown begins. My eyes close after the beep as I try to keep some vestiges of sleepiness. If the reading is good, I can go back to sleep and the "middle of the night routine" will not begin.

It is 3 a. m. and I got a 72. It isn't a number I can let go of, return the meter to the kit, place the kit back to its customary place on the nightstand where it is literally an arms length away from me during the night, and go back to sleep. No this is a number where I go back to the kit and grab 3 glucose tabs. I manage to wake Deacon from his sleep because being tested in the night does not wake him up at all. I tell him he needs to eat those and I wander into the adjacent bathroom to use it. As I get myself a drink of water, I hear him crunching on the last glucose tab. I return to his bed and ask if he wants something to drink. Tonight he said yes. I give him his drink, tuck him back in and say that he will be safe for the night now and that I will see him in the morning. I wander downstairs, say hi to the cat and thank him for guarding the house, turn up the heat, turn on my computer and go place a cup of water in the microwave to heat up. As I wait for the computer to boot up, I turn on the radio and silently think about the recent string of low numbers at night. The microwave beeps and I place a tea bag in the water. I figure enough time has passed and I walk back upstairs to test Deacon to see if he has come up. He has and he is 117. I disturb his sleep one last time and say that I need his pump. I go into the basal settings and adjust the midnight and 3 a.m. ones one last time, create a slightly reduced temp basal and place the pump back into his pouch. I tuck the already sleeping Deacon back into his Toy Story covers and I go back downstairs to check email. The routine has begun.

It is 3 a. m. and I know that I am not the only parent of a child with diabetes who has been, is or will be awake tonight. The numbers will be different for us all. There will be frustrated groans, tears of worry and sighs of relief as each parent gets their result. Some of us will be lucky enough to go back to the warmth and comfort of our beds. Those of us who do get to go back to sleep feel as though they just won the lottery. Others will curse diabetes for the continuous highs and the disturbed sleep of both parent and child. Others will hurriedly treat a low and hold their breath for the prescribed 15 minute wait period between tests.

It is 3 a.m. and we are the silent army that maintains vigilance in keeping our children safe. Very few outside our community know what we go through every night. Our alarms may be set to different times but the result is the same. We are awake at least once a night to test and keep our children safe from the frightening lows or to ward off the highs which can cause complications down the road. Do our kids understand what we do every night for them? Maybe. Maybe not. But we know that we are doing what we must do to keep them safe and that is enough for us.

It is 5:01. My kids are safe, asleep and have no idea that I am on the computer and listening to the radio. I need another hour of sleep to prepare for our day of plans. Good night diabetes community. I will be back in a few hours to listen, commiserate and cheer about your nights.

Thursday, October 21, 2010

"Fear"

When I became a mother, I didn't realize the love of my child would also instill such a heart-stopping, body immobilizing fear. I remember being in the bathroom one morning and hearing a thud followed by Alex crying when he was 8 months old. He had climbed the couch and had fallen over the back of it. When Hawke was 9 months old and had the most stubborn fever of 103, I was worried about how safe it really was that he kept spiking back up to it. The doctors said he would fine, but I couldn't help but be worried. When Sebastian was born and had to be in the NICU for 11 days, I cried for hours that I had left him there in the hospital while I got to go home. I still cannot look at the pictures of him with tubes and wires hooked up to him. When I was pregnant with Deacon, I was very worried that the same problem that had caused Sebastian's problems at birth would reoccur.

The fear I have felt with scraped knees, bloody eyebrows, swallowed Magnetix balls, burned hands, allergic reactions, illness and stupid child stunts that have gone wrong can not be compared to the fear I feel when Deacon has severe lows, highs with large ketones that will not go away or when Deacon has passed out from a low. I have held my breath and spent several minutes silently praying that Deacon will start speaking to me and his blank stare would fade away. I have impatiently watched the clock counting down 15 minutes when I can re-check to see if his number has come back up. My heart has skipped several beats when the meter has read 42 at midnight when he went to bed fine. I have cried when he has thrown up and complained of his stomach hurting because he is sick and the ketones are making him worse. I have felt the calm come over me when I see Deacon getting better from another round of lows or highs.

Because of diabetes, I now carry what I term as the "emergency" phone everywhere I go. My alarm is always set to midnight and 3 a.m. I do not buy a new purse unless the "kit" can fit inside. I keep my eye on the clock for the time I know the school nurse will be testing Deacon. I breathe a sigh of relief on the days that I do not get a call at all.

Despite the fear of what diabetes can do, I have learned how to accept a lot of it. I also have many friends in the diabetes community who understand exactly what I feel and how hard this road is. This community also does not say "Boo." to unconventional ways of solving problems because there is no right answer to diabetes. There is only going with the flow at that time. I was relieved to learn that I am not the only person who has their child sleep in the same room as them. When Alex was born, I did what was termed as the "family bed." It wasn't planned, but something that came about by me needing sleep. I got a lot of flack about it. Now Deacon and I share a room, and I do not hear any criticism. That was liberating for me to be able to discuss how I am still sharing a room with my 6 year old son. My friends have heard me talk about how I do my best to keep my side of the room looking like an adult sleeps in there.

After being in this diabetes whirlwind for 3 1/2 years, the fear isn't at the forefront as often as in the beginning. I can let it go to the background until the next scary low, highs or illness. When the fear does return, I take the time to ride it out and let it out. I will not be able to control diabetes just as much as I cannot control a drunk driver hitting our car or whether my kids get hurt on the playground. I can talk about what I am scared of with others in the community. I can raise money to find a cure for diabetes. I can cry, curse, yell and punch pillows at the unfairness of it all. But most of the time I choose to follow my son in his footsteps and enjoy life. Because diabetes or not, fear or not, this is the life he and I were given; and looking forward to the next fun thing is a lot better than being anxious about when the next lightning bolt will strike. I think that is what all of our diabetic children would want us to do.

Monday, September 6, 2010

Teamwork

I hear the phrase, "I do not know how you do it." so often when it comes to raising the boys. I honestly do not know how I do it some times too. I try to do my best, forgive myself for my mistakes and forge ahead. There are nights I get so little sleep, I wonder how I am going to survive the day. Diabetes and illness come up out of the blue, and I am forced to change plans or accommodate my plans to meet everyone's needs.

I think the best answer to how I make things work is how I run the house. I believe in teamwork. Everyone has a job to do in the house and there are consequences if the job has not been done. In the first few months of single parenting, I had a hard time convincing my second oldest son that he needed to work as part of a team and that being in a family means that he is part of a team. He and I had many heated discussions where I would repeat myself about how much work I do to keep him housed, clothed, fed and healthy, and that helping me with chores around the house is not an inappropriate thing for me to be asking of him. It took several months of him helping out and then deciding to go on strike before he started to do the chores without complaint. His brothers also assisted me in convincing their brother that he needed to pitch in.

One chore he does not complain about is cooking. He loves to cook and he is our budding chef in the family. As the kids have aged, they all are starting to make meals or cooking part of a meal. There are times that H or A will cook the entire meal. They enjoy the feeling of accomplishment. I enjoy that sometimes they get a taste of their own medicine when their brothers do not want to eat what was made. That has happened less and less as everyone has gotten older.

I tell strangers to our family that I am the starter and that the kids are the finishers. I start the laundry and cycle it through both machines. The kids will switch off who folds and puts the clean clothes away. I load the dishwasher and one of them empties it for me. We are all supposed to make our own beds and clean our own rooms. I make Sundays our chore day. I make a list and we split it amongst ourselves to complete the chores that much faster.

We have many family meetings to discuss grievances and new ideas to solve our problems. I also praise what has been going right and what has gotten better. We use the remote control as our talking stick. No one can talk unless they have the remote. There were too many interruptions during the meetings for us to not have a talking stick. 

Teamwork seems to be the answer in my house to keep the chaos to a minimum. Enlisting the kids in helping me out as much as possible was the best thing I could have done for this family. 

I understand that I did not mention how teamwork helps to manage the diabetes within the family. I am going to write about that next week in "Managing the Chaos."

Sunday, August 29, 2010

Welcome

Welcome single parents who parent type 1 children and their non-D children too. I am a divorced single mother to four boys who range in ages from 12 years to 6 years old. My 6 year old was diagnosed with Type 1 diabetes when he was 2 1/2. I have been single parenting my sons for 3 years now. I began single parenting my boys about six months after my son was diagnosed.

In addition to raising my sons and constantly analyzing blood sugar readings, I also am a full time student. I am working toward a degree in Sociology/Criminology.

I am hoping that this blog will help others in my shoes who are trying to have their own lives while handling diabetes and raising their children single-handed. It is quite a balancing act while walking the tight rope of single parenthood.