Wednesday, October 6, 2010
On October 12 (also, My Mama's Birthday) it will be 4 months since Alli's diagnosis. Taking care of her diabetes has become almost 2nd nature. I use that term loosely, though. Because, just when I think everything is under control, something throws us for a loop. We're used to it.
Over the past four months we've laughed, cried, suffered bouts with anxiety about what used to be the simplest things in life, yelled, screamed and then cried some more. There came a point where we just finally 'are'. I will say that anxiety medication helps a lot, too. For me, it has taken my edge off and has allowed me to become more patient, and passive when I need to be. My mind is more clear, and I'm able to pick my battles. When sugars are high/low, it affects Allison's mood and she has some pretty severe mood swings. Those who don't know her illness would consider her a very spoiled brat at times--but that is not who she is. Yes, she does have the typical 3 (now 4 on September 20!) year old behavior at times, but it is definitely more intense when her body is out of whack. It's unpleasant to say the least, and it makes it really difficult to decipher the cause unless we check her sugar. It has taken Mike and I a lot to get on the same page with how we handle our parenting, but I feel that we now are working together, more than we were.
Some good news is that Allison just celebrated her 4th birthday and we had a great turn out for her celebration. We really wanted to make this year's celebration special, and it really was. And, now that she's 4, she is finally beginning to use the potty, and is very proud of herself! She PROMISED me she would use it on her birthday. I've held her to it, and she's doing well! We still have some work to do, but she's making great progress.
This year also marked our first JDRF walk. My Mom, Dad, Mike, Alli and I walked for Team "Alli Bri" and had a good time! The weather could have been better, but we did it, and I was able to raise $355 for the cause because I have the best friends and family EVER! Boy, I really am hoping for a cure. But, until then--we will still be hanging in there!
We are starting to be able to comfortably incorporate her Alli's care while being on the go --it 'almost' feels like old times. I can say, though, restaurants could use some MAJOR improvement with posting nutritional information! I have to hand it to McDonald's (not that we eat there a lot) but they have their nutritional information posted on nearly EVERYTHING! Kudos!!! With the vast amount of those living with this disease (and other illnesses that require diet restrictions), it should be a requirement! Going out to eat is a huge source of anxiety because I weigh and measure everything at home and have memorized the carb count of so many of the foods we eat. I am completely out of my element and feel out of control when we're in a restaurant, but I'm slowly getting over that. I'm pretty sure that the applesauce at Max and Erma's is not the same applesauce we eat, and therefore carb count is higher--but what is it? It's a mystery, so you guess and hope you are right. See? Little things like that...food isn't as much fun for me anymore. In fact, I've lost 10 lbs. according to the doctor! Ha, ha...cool!
So, we're 4 months into it, and we have the rest of her life to go. Most things in life have an finish line, and if you can see the end it makes things easier. I think that's what makes this the hardest to grasp--there is no mile marker to the end, no prize to be given. But, there is the prize of her life, and obviously, the greatest prize of all.
Monday, July 26, 2010
So, I've not written much because the last month has pretty much consisted of the same stuff as I've written about before. I'm trying not to bore you or be negative, but unfortunately, negativity is par for the course no matter how positive I try to be. However, the positive is that we are now with a very reputable Endocrinologist and Alli is still alive. :) I will apologize now for the sarcasm. The past few weeks have seemed so short but yet so long. I have fully accepted that my daughter has a chronic disease and am dedicated to helping her get better. I no longer have the pit in my stomach, but I still grieve for our old life--I know it will never be back, and we are starting new. Though, as that old life gets far more distant, it still is something I severely miss. To be blunt, this disease is really 'shitty'. And, now more than ever I'm feeling that no one relates with what we are going through other than those who are directly affected by their own condition or that of a loved one. Other than that, no one knows the severity, the frustration, the anger the sadness....and at the same time, the triumph. Yep, I said triumph. My little girl is a fighter, and we are beside her all the way. She will tell all her friends about "Diabetes" and really loves it when they come with her to get her finger poked or to get an insulin shot...maybe sharing it makes it easier for her. But, she already notices she is different. The one thing I never wanted her to see.
It's been ONE MONTH AND TWO WEEKS since her diagnosis. The picture you see is the reality of all the injections Allison has endured thus far, minus a few that have made it to the trash instead of the sharp container. If you have a phobia of needles, don't look. But it's Allison's reality.
Our lives have changed so much in the last month and a half. We have no other choice but to deal and live. But, I now have a new perspective on life and petty problems no longer exist. Our lives are dedicated to making our daughter healthy and trying to make the best of the hand we've been dealt. So be it. I also know there could be so much worse, and I dare not even think about what 'could be'.
Sunday, June 27, 2010
It was two weeks yesterday since Allison was diagnosed. Although our attitudes and schedules are adjusting, I still can't help but feel the pit in my stomach. It's the pit of the unknown....the pit of what our future holds. Those of you who know me know that I am mostly optimistic and that I take the lemons thrown at me and make lemonade any day of the week, but this is still one heck of a lemon to squeeze and I know it's going to take nothing but time. Mike is also dealing with this in his own way.
I've had some good conversations with friends this week, old and new. I've enjoyed talking with the mothers who have children living with this disease, and hearing stories similar to mine. In fact, I just got off the phone with a friend who gave me the most candid recap of her experiences. I'm so appreciative because she didn't hide behind the "Oh, it's going to be OK..." type responses. It WILL be OK, I know that. Though the journey to getting to OK is going to be rough. There will be ugly involved, folks, plain and simple. The good news is that the good will outweigh this ugly. But, God please grant me the strength to get through. My new reality: There will be hospitalizations. There will be times when I have to trust people I don't know. There will be times when I have to trust Allison. There will be times when people let me down. And, there will be times when we feel alienated. But the hardest to digest is that all of this affects my child's HEALTH. There is constant unpredictability in the horizon. I guess this is what I'm struggling most with right now. I love roller coasters, but not emotional ones. Any trouble I've had in my past I've been able to work through it quickly, but this is not something that has an expiration date, and not something to be taken lightly.
I've done my best to prepare for this 'unknown', and that's all I can do. Everyone that can work with and for me is...well, most everyone. What I'm still trying to digest is that this is going to be a constant fight, and not one that we can lose. I wonder how others who's babies were in with mine at the hospital and received the same blow we did are handling it?
I want our fun back... Maybe I'm expecting too much? For our first trip out of the house together to do something fun, we were going to go swim at my Grandma and Grandpa's condo pool. Though it wasn't as fun as I remembered of our previous pool trips last summer. Alli now travels with two more bags than she used to--one for supplies and one for snacks. Although I had made sure we were going good to be able to make the outing, Alli's sugar was low when we got there. The scary part was that she didn't show any signs. If I can't read her (and I have been able to, usually), how am I to prevent another calamity? My Aunt wanted us to stop at the pool before going back to Grandma's for lunch...in our old life, NO BIG DEAL, however I knew we needed to get to Grandma's and fill Alli's belly first--then we can play, so I was really in a rush. I didn't get Alli out of the car, which was a good move on my part because when we got to Grandma's Alli's sugar was 64. I don't think anyone can truly understand the urgency that frequently pops up in our new daily activities unless they have been through it. I'm the first to stand in line and say I didn't. Our second trip out was to go to Home Depot. Nothing exciting, but I wanted to buy a water hose so that I can hook her sprinkler up. Alli was in a great mood and enjoyed riding on the lawn mowers. I've been having a lot of anxiety taking Allison out of the house since all of this happened. I really hope that lessens.
My blessings: In two weeks we've been able to get Frank, Eileen (Mike's Mom & Dad) and Ashley trained to take care of Allison. Meal schedules are smoothing out and Allison is more accepting than she was in the beginning. Allison's sugar is a lot lower than it was even a week ago, and she seems to be back to her old self (but not without challenges ;)). And, my boss was able to work some things out for me at work, so that base is covered, too. We're moving in the right direction, and forward is the direction we will continue to go.
Wednesday, June 23, 2010
Yep, that's the saying, and always been one of my favorites, "There is strength in numbers." How true. We had a very successful day today--Alli's first day at her babysitter's. She must have been a little worried as I was, not that Ashley couldn't handle it, but more of how Alli would feel. Today was the first day she was away from us since all of this happened. She was a little emotional this morning, but I was able to talk her down much of the time and I tried to make our morning just like all the mornings before so she could understand that even though some things have been added to our routine, it really remains the same. I tell you, though--there's nothing like getting a kid to eat, giving an insulin shot and making sure you have all the necessities for her day. I prayed on the way to work that I didn't leave something detrimental on the counter and even checked her bag twice while waiting at the traffic lights just to make sure I had everything.
The ride was normal, though Alli was pretty quiet. She kept telling me that she didn't want me to go to work. I didn't want to go either. Believe me, I have thoroughly enjoyed being home and being there for my baby these past few days. I think I even felt more anxiety with leaving her then I did when she was 3 months old! I think I feel this way because I just never know what's going to happen from one minute to the next. Ashley handled it ALL like a pro, though. Alli cried a little when we got there, but I brought her "special blankie" in from the car...it's a blanket that she uses to cover up with in the Winter, and she plopped on Ashley's couch with a quick recovery. I know it's hard for her.
We were also honored with a visit from some volunteers from the JDRF tonight. Alli was super excited because they brought her "Rufus the Bear with Diabetes". He has patches on all the areas where he gets his shots, and hearts on his paws where he gets his blood sugar tested. He has a medical ID bracelet and is the cutest thing. Alli took him to bed with her tonight, and I hope that she can tell all her Diabetes secrets to him when she's feeling down (if she doesn't want to tell us). Meeting Pat and Lori was great. They had a lot of information that helped us feel more comfortable with the future. It was wonderful to see that they were two active, successful people living a fulfilled life.
Tomorrow I will be meeting with my boss to talk about some possible options with regard to my schedule at work. I hope all goes well, but I think it will. Everyone from everywhere has been so helpful. In fact, I'm feeling just a little overwhelmed in returning phone calls, so if I haven't gotten back with you--I haven't forgotten you! It's just that I want TIME to talk, and that still isn't in the plenty yet, but forthcoming!
Thank you ALL for everything. You're the best. :)
Tuesday, June 22, 2010
This past week and a half, as hectic as it has been, has given me a lot of time to think about our new life, and the blessings that have emerged out of all of this. As evil as this Diabetes is, I've come to the realization that my little girl is now feeling the best that she has been in a long time. Her yeast infection is almost gone, she is very receptive to getting pricked and stuck and her spirits are high. I'm finding that the toughest thing to adjust to is her meals...it is so DAMN hard to get her to EAT at the right times. I cringe when I hear the words, "I'm hungry." Though, aside from our new meal time/night time regimen, she is a very NORMAL little girl! This is what keeps us going. I'm delighted that with all the changes that we've had to succomb to in just a short time that many things still remain the same.
My husband, Mike has been my 'rock' and the strength of our family and friends has made our healing process easier. I'm also finding that I am treasuring mine and Alli's alone time much more than I did before. Not that I didn't treasure it, but I used to take a lot of things for granted, as many of us do in this busy life.
Every night when Alli goes to bed, I lay with her and we talk about the day. It's amazing what she comes up with and the connections she makes about life for being only 3. Before I leave her for the night, I have to sing "Rudolph the Red Nosed Reindeer". I used to get so tired of this song....but not anymore. I've sang it to her so many times that she now sings all the words WITH me. Last night we did our routine that ended in song and then she asked me as she has before, "Mommy, can I ask Santa to take my Diabetes away for Christmas?" I told her, "You can ask, Honey, but Santa won't be able to take it away for you. It will be with you until they find a cure." She paused and I could see her wheels spinning. Then she said, "But, can he hold my hand when I get my shots?" *sigh* One of the most frustrating things about being a parent is that you can't take away their hurt and pain. Wouldn't it be great to find a cure for that, too?
Sunday, June 20, 2010
We are on such a schedule with Alli's snacks and meals which takes the fun out of everything, it seems. We're always counting carbs and performing math equations that I know that will become 2nd nature soon. The most important tools, aside from her obvious Diabetes supplies are a calculator and the internet (you can imagine how much more I'm loving my DROID right now, can't you?)
Last night we attended a party at our friends' houses next door. It was a birthday party for Jeff, Gracie's (Alli's new-found BFF) dad's 40th. I was feeling full of anxiety because this was the first event we would attend since Alli's diagnosis. We ended up being late to the party because I wanted to make sure that Alli had a meal in her belly before going and exerting herself running and playing, however that failed. She kept finding excuses about her pizza and why she didn't want to eat it. I tested her sugar, and she was actually in the mid 200's (which has been typical this week) so I didn't really worry too much about her hitting a low. So, no dinner for her...and anyone with children knows you CAN'T FORCE a three year old to eat, so what's a mother to do?
I knew there would be the impending birthday cake because after all, what's a birthday party without cake? Alli can eat cake, but she has to take insulin afterward. But, without dinner and the clock ticking, it became more apparent that the cupcake may just be her dinner! A Diabetic eating a cupcake for dinner?? It happened. Does that qualify me as Mother of the Year? Alli thought I was. :)
Going to the party was the first glimpse of 'normal' that we've seen in a week. The fact that we were able to hang out with our friends and enjoy ourselves was a wonderful oasis in place of all the emotions that we've been through recently. We even got to meet Jeff's sister who has a little girl, Gabbie (now 10 years old), and has lived through all of this, too. It was refreshing to see for myself that things WILL be OK!
Saturday, June 19, 2010
The song Cruel Summer by the Bengals was playing on the neighbor's patio speakers last night. I used to like that song a lot back in the day. As I was listening to it again for the first time in a long time, I realized the Summer Solstice is upon us in just a couple of days and we too will have a cruel summer ahead as we take the time to adjust to our recent news.
Just two weeks ago we were beginning our Summer celebrations and were coming home from the beach. Life seemed so simple. Today I decided to tackle some laundry and realized when I went to switch the load from the wash to the dryer that Alli's clothes were still in there from when I washed them when we got home. Remember, I told you that I don't like to do laundry, so this shouldn't surprise you! But unloading the dryer, I couldn't help but think back to our normal time. I want those days back in the worst way.
My DREAM was to have Allison grow up in a neighborhood with other little girls her age and play until her little heart was content. Since the weather has gotten warmer, Alli has made friends and loves to jump on our neighbor's trampoline and swing on their swing set. There was a time, just a few weeks ago, that she could eat as many popsicles as she wanted and never had to worry. This, of course has changed. She will still be able to do her normal activities, but we will need to monitor her like a hawk until we get her straight, and this will take some time. So, no, it's not all bad but definitely not how I pictured her childhood. Our neighbors--though from this point forward I will refer to them as FRIENDS, have been very supportive of us and in educating their kids about Allison. But, my heart can't help but hurt when they are are having a snack that just a couple of weeks ago Allison could have, and now she can't. I don't think it's fair on either part--for Alli who can't eat it, and for the kids have to stop what they are eating because Alli is there. I don't want them to resent her or not want to play with her because they too, are limited when she's around.
Not are only those stresses running through my mind--making sure our daughter is happy, but I'm wondering how this will affect us financially. I'm sure we will be fine, but there are a lot of unknown variables at this moment. I'm not sure what to do with work and not sure about her daycare. But, I had a dream that we had to move to a dilapitated trailer in the hood to pay for my baby's medical bills, and we had to leave without telling anyone. I was devastated. In the dream, Mike kept smiling through it all as we were walking around this slimy trailer with peeling wallpaper and a bathtub that had dark stains and gurgled. It stunk. I was completely grossed out and in disbelief that this was my new life (much like I am now). I kept asking him, "Are you OK with this?" He would say, "Yep, this is what we have to do." I just kept saying, "I'm not OK." and then I woke up. I was never so thankful to see my bedroom walls in ALL my life, but we are still living what most would consider a bad dream.
I know I won't feel this way forever, but from what I understand there is a grieving process and I am in the middle of it. I'm facing going back to work next week and am thinking about this week I've had with my little girl and how far we've come. How will this work for everyone else who will care for her in my absence?
Friday, June 18, 2010
After arriving to the ER and the staff performed all the necessary "horribleness", we were told by the doctor on duty that they were 90% sure that our daughter had Type 1 Diabetes. But, our ears heard that there was a 10% chance she does not. For a few more moments we had hope. Though, our hope disappeared on Sunday morning when we received a visit from her Endocrinologist, and we then had to face our new reality when he confirmed this as her official diagnosis.
I knew a little about Diabetes after being pregnant with Allison, but have never known anyone to have her kind. I've heard how bad it is that the little ones have to be stuck several times a day with needles, etc. and how awful that is for them. But, I never knew in great detail what an uproar it is on family life. The three days our family spent in the hospital involved some intense training--training that means life or death for our daughter, and no room for a learning curve. Not only did we have to get it, so would EVERYONE who cares for her. Spontaneity is gone out of our lives for the moment. Every trip, no matter if it is just to the grocery store takes planning. Those of you who know me know that I'm a planner...but this is more than I'm used to, honestly.
The other day, someone clicked 'like' on Facebook for a group called, "You Never Know How Strong You Are Until Being Strong is Your Only Choice". I clicked 'like' too because this is the first time in my life that I feel that I actually need to be STRONG in the truest sense. I mean it. Every other incident where I thought I was, it is no match for what we are going through now. Alli needs us to be strong for her...each and every one of us. I know it's important to be strong but find myself in many moments of weakness. I need to tell you how strong my daughter is, though. In less than a week's time a girl who wouldn't take cough medicine or acknowledge "boo-boos" is now taking injections 4 times a day and gets her finger poked 4-6 times a day! We are on Day 4 of being home and getting used to our new life which now includes all of the above along with telling Alli "No", a lot. Ha, she told me last night that "everything is aggravating". How many three year-old's use such big words and let-alone in the correct context? She has nailed this on the head. We are aggravated, OK, even ANGRY that we are one of the 'chosen' to deal with this. But we will more than deal, believe that.
I've compared this whole transition we are going through to the experience we shared when she was born. From the hospital stay to having to get up in the middle of the night to feedings several times a day it sounds much like raising a newborn, doesn't it? A couple of years ago, my best friend, Robin and I visited a psychic for fun. That was a strange experience in itself. We were in downtown Philadelphia and saw a neon sign in the window of what we soon found out to be someone's apartment. We climbed the enclosed stairs to the top and knocked on the door. A woman answered, and we entered into a small area that was over-flowing with dirty laundry. I had to laugh because laundry is one thing I will avoid at all costs, so she's human, right? Anyway, she obviously had young children because there were baby bottles and small toys scattered about which added to the surreality of our experience.
Robin went first and I could hear bits and peices of what she was being told. After talking with Robin later, much of it was about the relationship she was in with her husband. The psychic, from what I gather was right about much of what Robin has gone through, but she's never shared all of what was spoken--we were told not to. Then, my turn. I went in and sat down. She read my palm and told me that I would live a long, healthy life (whew!), but then she said that I would have a 2nd child. Now, I don't mind sharing to most of you that Mike and I love Allison very much, but she is all we can handle. :) Mike and I chose for him to have the 'surgery' to make sure that we wouldn't have anymore. When the psychic said I was going to have another child, I began to doubt her immediately. I thought, "There's no way!" So, why am I telling you this?
On the way home from bringing our baby girl home from the hospital for the 2nd time in her life, it hit me like a ton of bricks. I'm bringing home my 2nd child...one with DIABETES.
Thursday, June 17, 2010
We will always remember this day, as it is the day that changed our lives forever...
On Saturday, June 12, 2010, I made a doctor's appointment for my daughter, Allison, to have a diaper-looking rash inspected. I knew in my mind that there was a reason for this rash, and had suspected that it was a yeast infection. Before leaving for the appointment, I decided to do some quick research on the Internet to find out what could have caused her to break out. Being that my daughter is only 3 1/2 years old, it was easy to rule out the most common reasons that one would have this rash. There was the last contributor that I could not ..... Diabetes.
So, onto the appointment we went. We had to see a doctor that we've never seen before because I took her after normal hours. Allison was visibly upset--she doesn't like going to the doctor. After telling Dr. G what I had found out about yeast infections, I also told her that I noticed that she recently had very full urine diapers and had been drinking a lot of liquids over the past couple of weeks.
Truthfully, I had never put those two together as 'symptoms' because the weather had just turned warm and she was playing and exerting a lot of energy. Naturally, I expected her to drink more. However, now that we are at the doctor's, I'm realizing this could be more serious. Dr. G said that she wanted to "wait and see" if her symptoms worsened since I didn't notice anything other than the those two signs I just mentioned. Honestly, I didn't feel comfortable with her response.
Having Gestational Diabetes when I was pregnant with Allison, I knew how serious this could be if left untreated. I asked Dr. G if she could take a quick blood test to get her current glucose levels. She left the room, came back, pricked Alli's finger and left the room again. Little did I know, these would be our last moments of normal. The doctor entered the room and told me that her machine only reads glucose levels up to 450 and "Allison is at 450, and could be higher. You need to take her to the ER." It took a minute to process this information, because just a few minutes ago we were going to wait and see! After it sunk in, I lost it and became a blubbering mess. This moment was the end of our old life and beginning of the new. She would be the same as she never was....