This morning as I was reading the newspaper, I came across an ad for Hobby Lobby. Almost all of the items advertised were decorations and crafts for Christmas. After looking at it, I suddenly realized that Christmas is a mere 4 months away. I started to think about how fun Christmas will be at our house this year. My girls will be perfect ages for the pure joy and magic that Christmas brings. As I was envisioning our home decorated and the excitement on my girls faces, I couldn't help but think to the future.
Lately, not a day goes by that I don't think about the road that we will be maneuvering in a month. In my head the map has so many turns and unknown whereabouts, that I can hardly comprehend it all. And at the end of the chaos is our destination. All four of us coming home together and doing what we do best, being a family. Enjoying things together, like Mia's 2nd birthday, Thanksgiving, Christmas. I truly hope that is our final destination and that we do not encounter any detours.
I don't want to think about the detours or the dead ends that may come in our way, but it's reality. I don't want people to tell me not to worry about it or that everything will be ok. Yes, that is the ultimate hope and odds are it will all be ok. However, there are also legitimate fears that I think about daily. There are fears that I need to talk about and need to face. Maybe it's the question that I'm not supposed to ask out loud, but what if it's not all four of us at Christmas?
The hard truth is that Mia has half a heart, she always will, until one day she needs a transplant. How many Christmas's will that be? Will she graduate? Will she go to college? Will she get married? I don't know. As I type this, seconds of that future are ticking away. Can I live my life in fear? No. But do I have fears that I think about and, at times, need to talk about? Yes.
Sunday, August 25, 2013
Thursday, August 22, 2013
Sick
Well, both my girls are sick with a cold. I guess better that it happens now. Mia's surgery is 5 weeks from today. That should be enough time to get over a cold, right? Hopefully we just don't keep passing it back and forth to each other. In about 2 weeks we're going to start being extra careful about germs. Fun. I feel like we've reached the start of the countdown to surgery day. I've even counted. It's 34 days from today. I've started making my lists of what we need to bring where. It's upon us.
Yesterday Mia had her final cardiology appointment before surgery. Thankfully, they were able to get a full echo. Apparently it's hospital policy that they have to have a good echo within 3 months of surgery. Aside from yesterday, her last successful one was in April. If they hadn't gotten it yesterday, they were talking a sedated echo before surgery, I'm so glad we don't have to do that. Everything on the echo yesterday looked good. Our cardiologist even referred to her heart function as "normal." That amazes me. Mia amazes me. I've said it before and I'll say it again, she is our miracle. I love her more than words can express. With the last appointment and echo behind us, now we simply need to stay away from sick people (HA, I'm not sure that's even possible!) and get well!
Yesterday Mia had her final cardiology appointment before surgery. Thankfully, they were able to get a full echo. Apparently it's hospital policy that they have to have a good echo within 3 months of surgery. Aside from yesterday, her last successful one was in April. If they hadn't gotten it yesterday, they were talking a sedated echo before surgery, I'm so glad we don't have to do that. Everything on the echo yesterday looked good. Our cardiologist even referred to her heart function as "normal." That amazes me. Mia amazes me. I've said it before and I'll say it again, she is our miracle. I love her more than words can express. With the last appointment and echo behind us, now we simply need to stay away from sick people (HA, I'm not sure that's even possible!) and get well!
Thursday, August 8, 2013
Drained
Today was pretty much like every other day in our house, the only exception is that right now, almost 6:30 in the evening, I'm completely drained. Mentally, physically, emotionally, I feel like I have nothing left.
I've been thinking a ton about Mia's surgery lately, thus not getting very much sleep. I can't believe it's almost the middle of August. Art and I sat down this morning and planned out exactly what we hope will happen on pre-op day and surgery day. Who needs to be where at what time and all of that. Maybe that wasn't the best way to start the morning, I don't know.
Right before lunch I went to pick up Mia's medications. I go every two weeks, so this isn't out of the ordinary at all. Got the medications, paid, and went to the car. Because she still takes her meds out of a plastic syringe in liquid form, I have to get these special caps to put on the bottles for the syringe. Luckily I checked the caps before driving home and found they were the wrong size. So I went back into the pharmacy, took the caps off the medication and had the cashier try the caps before I left. Well wouldn't you know it, my hand hits one of the bottles and probably 3 days worth of medicine spills out.
It wasn't about the medicine spilling, or the fact that we'll have to pay for another bottle sooner than expected, but for whatever reason, spilling that medicine put me over the top. I started sobbing. Right there in the middle of the pharmacy. Two cashiers and a pharmacist just stood there and stared at me. I was the most embarrassed that I've been in a long, long time. I didn't know what to do. I just cried and looked at them saying "I'm sorry" over and over.
Those poor people have no idea why I was crying. To them it looked like I knocked over a bottle of medicine and it upset me tremendously. That I was crying over spilled milk, or in this case, Enalapril. I was crying over something much, much deeper than that. They don't know what goes on at our house every day, they don't know what we have in store in exactly 7 weeks. To them, I will now just be the crazy lady that cried because I spilled a few tablespoons of medicine on the counter. If only it were that simple.
I've been thinking a ton about Mia's surgery lately, thus not getting very much sleep. I can't believe it's almost the middle of August. Art and I sat down this morning and planned out exactly what we hope will happen on pre-op day and surgery day. Who needs to be where at what time and all of that. Maybe that wasn't the best way to start the morning, I don't know.
Right before lunch I went to pick up Mia's medications. I go every two weeks, so this isn't out of the ordinary at all. Got the medications, paid, and went to the car. Because she still takes her meds out of a plastic syringe in liquid form, I have to get these special caps to put on the bottles for the syringe. Luckily I checked the caps before driving home and found they were the wrong size. So I went back into the pharmacy, took the caps off the medication and had the cashier try the caps before I left. Well wouldn't you know it, my hand hits one of the bottles and probably 3 days worth of medicine spills out.
It wasn't about the medicine spilling, or the fact that we'll have to pay for another bottle sooner than expected, but for whatever reason, spilling that medicine put me over the top. I started sobbing. Right there in the middle of the pharmacy. Two cashiers and a pharmacist just stood there and stared at me. I was the most embarrassed that I've been in a long, long time. I didn't know what to do. I just cried and looked at them saying "I'm sorry" over and over.
Those poor people have no idea why I was crying. To them it looked like I knocked over a bottle of medicine and it upset me tremendously. That I was crying over spilled milk, or in this case, Enalapril. I was crying over something much, much deeper than that. They don't know what goes on at our house every day, they don't know what we have in store in exactly 7 weeks. To them, I will now just be the crazy lady that cried because I spilled a few tablespoons of medicine on the counter. If only it were that simple.
Wednesday, July 31, 2013
Surgery Date Change
Because we had scheduled Mia's surgery so far out, we knew that the date changing could be a possibility. Today it changed not just once, but twice. Our surgeon will be at a conference the week that it was originally scheduled. So first they rescheduled us for exactly a week later. Then his assistant called back later this afternoon to let us know that the scheduler read is schedule wrong and he won't be back. Still that same week, but on Thursday instead of Tuesday. New surgery date...September 26th. I asked his assistant many time to check his schedule to see that he would for sure be there then and for a few weeks afterwards as well. She assured me he would be. I'd much rather find out now, when we're still about 2 months out, than the day before!
Tuesday, July 23, 2013
Remembering
Today as I was waiting at a red light at an intersection, traffic in all directions was halted by an approaching ambulance. As I heard the sirens and watched the flashing lights drive past, I was reminded of a day in my life that changed who I was forever. The morning that I was taken in an ambulance after falling to the floor of my apartment for an unknown reason. The day I had a stroke.
Sometimes an ambulance or emergency vehicle passes by me and I don't give it a second thought. Other times, like today, I have flashbacks of that morning. I remember not being able to communicate with my parents over the phone. I remember strangers practically breaking in the door to get to me. I remember going in and out of consciousness in the ambulance. I remember waking up in the ER, seeing a bright light, and hearing the voices of angels calling my name.
It's sometimes hard for me to remember my recovery time in the hospital, it's all a blur, but I will never forget that morning.
Today those memories played over and over in my head. For many months, possibly years, after my stroke, I tried to push those memories out of my head. I didn't want to remember. But I now realize, that those memories have greatly shaped me into the person that I today.
They're memories that are very hard for me to rehash and hard for me to share. But every once in awhile, they come to mind. At those times, it is very plain to see that life can change in an instant and we should never take a minute of it for granted.
Sometimes an ambulance or emergency vehicle passes by me and I don't give it a second thought. Other times, like today, I have flashbacks of that morning. I remember not being able to communicate with my parents over the phone. I remember strangers practically breaking in the door to get to me. I remember going in and out of consciousness in the ambulance. I remember waking up in the ER, seeing a bright light, and hearing the voices of angels calling my name.
It's sometimes hard for me to remember my recovery time in the hospital, it's all a blur, but I will never forget that morning.
Today those memories played over and over in my head. For many months, possibly years, after my stroke, I tried to push those memories out of my head. I didn't want to remember. But I now realize, that those memories have greatly shaped me into the person that I today.
They're memories that are very hard for me to rehash and hard for me to share. But every once in awhile, they come to mind. At those times, it is very plain to see that life can change in an instant and we should never take a minute of it for granted.
Monday, July 15, 2013
Putting Things in Perspective
This evening we were at my in-laws house to celebrate my father-in-law's birthday. While we were there, I was chatting with my brother-in-law about Mia's upcoming surgery. At the end of our conversation about the surgery, he said, "well, no matter what, we have to consider ourselves lucky for what we have." And he's right. I'm so lucky to have Mia. No matter how many surgeries she has to undergo. No matter how many doctor's appointments we have to attend. No matter the fact that her heart only has two working chambers, I'm lucky. I have a beautiful, happy, amazing daughter. Mia, Izzy and Art are my everything. I am lucky.
Mia's third open heart surgery is 2 months from Wednesday. It has been on my mind constantly lately. Earlier today I read a blog post about the third HLHS surgery called the Fontan. It was a success story. Usually I find that I'm reading Fontan stories about kids with not very happy endings, this story was just the opposite. It was refreshing. It gave me hope. It put my mind at ease a little bit. The story was about a little girl about Mia's age when she had her Fontan. She was in the hospital for 8 days and has recovered wonderfully. The family is now 2 years post Fontan and living a pretty "normal" life.
Ever since we made the decision of when Mia's surgery will be, I have questioned whether or not we made the right choice. Mostly because of her age. She won't even be 2 yet. The surgery is exactly a month from her 2nd birthday. But the story I read today also opened my eyes to see that I DO think we made the right choice and that there are other kids out there that have had the surgery at a younger age.
There is a fellow heart mom in our town whose daughter is having her Fontan tomorrow. Her daughter is a little over 2 years old. I share their fears. Tomorrow they will be embarking on something that very few parents can understand. I understand. While there I days when I wish over and over that I didn't understand, that I was clueless to what some families go through, today I consider myself lucky to have that understanding. No matter what happens in two months, I have a beautiful, happy, amazing daughter. I have my Mia, and I am lucky.
Mia's third open heart surgery is 2 months from Wednesday. It has been on my mind constantly lately. Earlier today I read a blog post about the third HLHS surgery called the Fontan. It was a success story. Usually I find that I'm reading Fontan stories about kids with not very happy endings, this story was just the opposite. It was refreshing. It gave me hope. It put my mind at ease a little bit. The story was about a little girl about Mia's age when she had her Fontan. She was in the hospital for 8 days and has recovered wonderfully. The family is now 2 years post Fontan and living a pretty "normal" life.
Ever since we made the decision of when Mia's surgery will be, I have questioned whether or not we made the right choice. Mostly because of her age. She won't even be 2 yet. The surgery is exactly a month from her 2nd birthday. But the story I read today also opened my eyes to see that I DO think we made the right choice and that there are other kids out there that have had the surgery at a younger age.
There is a fellow heart mom in our town whose daughter is having her Fontan tomorrow. Her daughter is a little over 2 years old. I share their fears. Tomorrow they will be embarking on something that very few parents can understand. I understand. While there I days when I wish over and over that I didn't understand, that I was clueless to what some families go through, today I consider myself lucky to have that understanding. No matter what happens in two months, I have a beautiful, happy, amazing daughter. I have my Mia, and I am lucky.
Wednesday, July 3, 2013
Happy Girls
The other day the girls and I were playing dress up. They were having so much fun. I love seeing huge smiles on their faces. Every day is dress up day for Izzy, but Mia doesn't usually like to dress up. Well she couldn't get enough of it that day!
They also loved having their picture taken to show the results. Cracked me up that as soon as I pointed the camera at them, they both started saying "cheese" and posing. Love them so much!
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