Rebirth and Pride

Wow, my last post was 3 days before my car accident! It's been a while!!

We've now hit our 11 month mark since Alli's diagnosis. Quite an achievement, I'd say! We've definitely become stronger and the comfort level is there--but I still use that term loosely. This past February, I got a tattoo to commemorate this intense life change (as part of a girls night out with my awesome neighbor friends!). It was very symbolic and emotional for me. My girl is essentially marked for life, and I felt in some way, that this was my way of showing my support to her and what she goes through each day. It is a Celtic butterfly (the symbol of re-birth, which is what we've been forced to do as a family) with the diabetes ribbon as the body. A heart is etched in the ribbon as the blood drop so that I carry her heart with me everywhere I go. It was kind of a right of passage for me to endure some of the pain that she goes through...only my needle pricks were all at once and she will get them for the rest of her life until we find a cure. I'm optimistic about that. I have to be.

We are very much looking forward to what this Summer has to bring. Alli is becoming very aware of her illness and is so helpful with reminders to Mike and I. It's funny. In just a couple more years (maybe sooner), she'll be checking her own sugar, counting carbs and giving her own shots. Diabetes builds strong character, responsibility and good math skills, that's for sure! That's the only good I can find in this, but I am a firm believer that things happen for a reason. So, we're making Lemonade. :)

One of the hardest things is the lack of awareness surrounding this disease. Since only 10% of Diabetics are Type 1, many people confuse her condition with the lifestyle of a Type 2 Diabetic and make it out to be 'not that bad', she just needs to watch what she eats and that she can grown out of it. NOT TRUE. What hurts the most is her restricted 'freedom' of choice of 'what' and more importantly 'when' to eat. Waking her up in mid-sleep to eat because she is running low (who likes to eat/drink immediately when they wake up?), not being able to have what the other kids have when they have it, and not to mention the mood swings that come with extreme sugar changes. When the ice cream man comes around, most get excited, but my stomach turns. My girl is a trooper, though. She accepts her limitations. She is amazing.

This year of 'rebirth' has produced more tears and as much laughter. The tears come from when she's down with sickness, and the laughter comes from her just being her. There's nothing better than her sense of humor. I hope she keeps it close to her, because that is what she will need to get through this life! Life is a comedy for those who 'think'. My girl is a thinker!

She asks me pretty regularly, "Mommy, what are you proud of me for?". My heart melts each time like it is the first time I've heard her ask this question. There are too many things to list, honestly. But, I am proud of her strength, her honesty (which is pretty amazing for her 4 year old self), her trust, her love of life, her sympathy for others and her independence. She always says, "What else?" Ha, ha... We all need affirmation that we are doing things right, don't we?

So, my 'new baby' is turning a year old on June 12. Much like that first year I brought her home, things are falling into place and we are rolling with the punches and finding the hi-lights of life. Every day is a gift. Thank you, God.

Almost Four Months

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.

1 month and 2 weeks

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'.

Reality

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.

Strength in Numbers

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. :)

Our Song

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?

Mother of the Year

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!