Friday, April 29, 2011
Disney World so she can meeting Mickey, Minnie, Goofy, Donald, Daisy, Lightening, Sally, Mater, Buzz, and Woody. She also wished to go to Sea World because Elmo hangs out there when in Florida. Officially, the wish is to stay at Give Kids the World Village and go to various Orlando attractions.
As of two weeks ago, the Dancing Queen's wish was officially granted and is being planned. A local company adopted her wish (will pay for all of it) and there is a bike team started in her honor. They will bike 300 miles in DQ's name this summer, raising money for Make-A-Wish of Michigan.
We will go in December. DQ and TRex are beyond excited. DQ has never had a real vacation and TRex doesn't remember the only one he has taken at 10 months old, before DQ's diagnosis. We traveled last summer, but I don't think spending half of the time in the hospital really counts, even if you stay in a hotel, ride a plane, and go to the ocean.
Make-A-Wish is an absolutely wonderful organization that has made my daughter light up more than I thought possible just from the thought of meeting Mickey and Elmo. It is a bright spot in what is normally not a lot of fun. The anticipation is amazing, so I can't imagine how exciting the actual event will be.
So, in honor of World Wish Day, I am publicly thanking Make-A-Wish, Make-A-Wish of Michigan, all of the volunteers and employees of Make-A-Wish and Make-A-Wish of Michigan, all of the generous donors, and all of the Wish Families before us. I am humbled by the outpouring of love for my family and overjoyed from seeing smiles on the faces of my babies.
I can't say enough good things about this wonderful organization. Thank you.
Wednesday, April 27, 2011
I am afraid that the seams between the plastic pieces are not good enough or part of the slide will come apart just a little so that as I am flying down the slide, part of my exposed body will get stuck and all of the skin will rip off. Yes, this is too much information. Yes, it is irrational. But, I just felt like sharing this with all of you when I saw this super freaky picture:
I know nothing like that would actually happen on the slide, but it's like I said: IRRATIONAL FEAR!
Do you have irrational fears?
Tuesday, April 26, 2011
I work full-time. So does the Mad Scientist. In order to pay for our house, my student loans, food, and maintain health insurance to cover DQ, we must work. We've debated over and over and over again whether the Mad Scientist should be a stay at home dad and keep DQ shielded from the world. We decided to put her out there, to let her live her life.
My daughter has DiGeorge's Syndrome and severe, complex heart defects and lung disease and I let her to go public school. She rides a bus. She plays with other kids. We take her to the zoo, the mall, and she went to the movie theater for the first time last weekend. We let her interact with other humans. You know what, she loves it! My daughter is a people person, who loves life. And if you asked her whether going to the hospital every other month was worth playing with friends, singing songs in a group, and playing at a park, she'd say yes.
Could I keep her in a bubble? Yes. Could I prevent her from being a part of the world? Yes. Would that keep her from getting sick? Maybe. TRex still would be going to school and he'd still get sick and bring it home. Maybe I should be keeping him home as well. Even if we kept her home and away from the rest of the world that she loves, there is no guaranty she would stay with us longer. The only guaranty in that would be a less happy child.
When DQ was under lock-down mode last August through November due to prepping for surgery and recovery, she was miserable. She wanted to go to school. She wanted interaction with other children. She wanted a life outside of her home. Staying hidden from the world is not her.
Yet, I constantly have people questioning my decision to let her live her life in the open. I promise you it was not an easy decision. I don't like the thought that my daughter could die from a virus caught on the school bus, but I also know there is NO guaranty she would be fine if we locked her away.
We choose life, lived to the fullest in our household. I wish people would understand and not question my decisions. We each have our own priorities, our own special problems. That leads each of us to take our own path. I will not question your choices. Please don't question mine.
I try changing my tactic with him. I get him up earlier, so he has time to lounge in his bed. That doesn't work. He still fights me and then just fights with me longer because he has more time to fight with me. I try waking him sugary sweet with excitement and possibilities in the day. He just grumps and fights. I try waking him up matter of factly, telling him I don't want to fight. That sometimes works for a little while, but he still fights me. I put him to bed early the night before thinking maybe he needs more sleep, he still fights with me. I wake him up with hugs and love and slowly. He fights me. I wake him up fast with hugs and love and he fights me. I tried letting him go downstairs with the tv and get dressed and used the bathroom there, it was even worse. I've used every trick in my book and they have all failed!
Bedtime can be contained if he gets his routine and goes to bed right on time. Not early, not late. Tonight was not the night of containment.
I am so tired of fighting with him. Is this going to last until he goes off to college? I'm not ready for this yet. I thought I had until he was at least 13. Help! I don't want my only time with him to be fighting.
I know a lot of this probably has to do with him not seeing me enough. I know this. I'm working on my scatter brain issues so that I can start to get work done more efficiently, but the constant fighting with TRex just adds to my issues. Am I doomed to take my family down with me?
Friday, April 22, 2011
|Waiting for the IV to come out so she could hit the road!|
Monday brought sadness when I spent the afternoon in my OB's office, remembering and thinking. By Wednesday, I was bound and determined to be up beat. It is working, but I'm still having scatter brain problems. Thursday, I uploaded DQ's heart story here. It has been published in a book of heart stories, so you may have seen it before. Tonight, I am going to a baseball game in the cold and rain.
I hope everyone has a great weekend and if you want to chat with me, check out my Facebook page. I'm thinking of doing a post on comfort items for kids, such as pacifiers, and want to know what do you think. Is it wrong for a child to use a pacifier after a certain age? Does it matter if the child is sick? Do you call out other parents when their child is using a pacifier in public or is drinking from a bottle, but is clearly older than even a toddler? What do you say when people say things about your child? Has someone commented about your child's lovey or their use of a sippy cup? Inquiring minds want to know.
Local governments make me want to scream frequently because they infringe on First Amendment rights more than any other branch of government. I think it is because most local governments don't have the knowledge or resources to understand what they can and cannot do when it comes to speech and assembly.
In my neck of the woods, a local government has gone to extremes to prohibit speech and assembly. The speaker is repugnant, but the censorship is worse. If we don't protect the speech of the lunatic fringe, soon all of our speech will be censored. If we try to stop the hate speech, we just fuel the fire of the supporters to react more aggressively.
I could say so much more on this topic. I believe in free speech. It is one of the most important civil liberties we have in this country. But, I don't have the time today to pontificate further. Instead, I ask you: Who would you be without free speech?
Wednesday, April 20, 2011
With all of those road blocks, I'm still happier than I have been lately. I'm still smiling and I can see silver linings. DQ had a blast at school and was so excited to drive her car in the gross motor room today. The school and her teacher are doing everything in their power to prevent further spread of chicken pox. DQ's pediatrician is not yet concerned and now that we know it is a possibility, we are prepared to jump into action if anything out of the ordinary happens. I had a great lunch with a friend. I have starburst jelly beans (the best). And I should be home before the kids go to bed tonight.
Life is good.
Tuesday, April 19, 2011
I've thought about this precious girl so much this past week, but mostly I've thought about her mother. Her mother wrote how she held her daughter in her arms as the child peacefully died. The little girl had been sick continuously. She had had a lot of the same infections DQ has faced this season and her body just couldn't fight them any more. So, she passed away in her mother's arms.
It wasn't expected, but it wasn't a surprise.
The two of them stick with me and probably will for a long time. So much of my own fears revolve around what happened to them because that could be me. And there is nothing that I can do about it. It very much reminds me of a heart mom friend's statement to me about her own daughter: "I know my daughter can possibly survive her multiple diagnoses--and even thrive--but I also know that, were she not to make it, none of her doctors would wring their hands and wonder 'what went wrong.' What went wrong was that she was born with a horrific combination of defects, and, as someone who would literally jump in front of an oncoming truck to save her, there's nothing I can do about it." That's just it with the Dancing Queen. There is nothing to do about it.
I am so lost without some way to help her. My entire being revolves around helping. I'm a lawyer. My job is to help people resolve their differences. I fight their fights for them. Yet, with my own daughter, I have no way to help.
That is why I am bouncing along, lost without direction. I feel like I no longer have purpose since I can't help. I know this is wrong of me and I have to redefine my purpose, refocus it on enjoying every moment I have with my family. I just don't know how to step back and not do anything to help, but I'm working on it.
Monday, April 18, 2011
I think it is funny how much certain places can bring back such overwhelmingly strong feelings.
Whenever the Dancing Queen is hospitalized in her primary hospital, I have to walk by the ultrasound department to get to the peds floor. I walk over the swirls the ultrasound tech sent me to walk over during my ultrasound of DQ to get her to move her hands. (She always had them over her heart.) The first time, my husband and I joked about the swirls. We thought the tech had sent us to walk on the squirrels.
I remember the jokes, but only after I get the painful reminder of the consultation room. Only after I remember lying on the table holding back tears when they said my baby was sick. I can't walk by those swirls without hurting from the memories. But in a cruel twist of fate, I must walk over those swirls frequently for my sweet girl.
Another similar place is my OB office. I had my annual appointment today. The entire time, I thought of how I used to sit there, trying to figure out how I would become the mother of a sick child. All of those fears and insecurities raced through me.
But more troubling was that I remembered myself before DQ in that waiting room. I could picture clearly who I was when I was pregnant with TRex and before the diagnosis with DQ. And I saw the huge change to who I am now. I'm not sure I like what stress, lack of sleep, and three plus years of constant worry have done to me. But how do I change? Can I get back the woman I once was? Do I want to?
|There is a river in this picture.|
Friday, April 15, 2011
And yes, DQ is still in the hospital. We are hoping to get her out tomorrow, but we hoped for that today as well and needed oxygen for the morning. We shall see. It better be soon. DQ keeps asking to come home. She is breaking my heart.
So, to wrap up this week, DQ has been in the hospital. I was trapped at home with a 104 temp. X & Y got me angry. My parents rock for rescuing us. I love my husband and my kids. Oxygen works wonders for DQ's heart. And, when sitting in the hospital, I found it hilarious that Donald was eating Elmo. (If you missed that, check out my Facebook page.) But now that I look at the picture again, it could have been the fever talking.
Did I miss anything really important in your week? I haven't been able to keep up since I couldn't see straight.
Wednesday, April 13, 2011
In February, when DQ was hospitalized the last time, X and Y refused to visit because they might get sick. And they refused to visit this time because X had a doctor's appointment on Tuesday. It makes sense, right? DQ has been in the hospital since last Thursday, will likely be in through this weekend and X has a 2 hour doctor's appointment on ONE day during the week, so they are way too busy to see one of the most important people in their lives.
Did I mention that neither X nor Y work. They only garden. If you didn't hear the snark in that statement, re-read it with lots of snark. We've had X and Y come to our house and pull TRex aside and ask why he doesn't visit them more often, prompting him to run to me and ask me: "Mommy, why can't I go to X and Y's house?" Then when we ask if we can come over, we are told the weather was too nice, X and Y need to garden.
I have many more instances. X and Y totally skipped TRex's birthday last year and showed up 2 hours late to DQ's 3 hour birthday party last year. They rarely visit DQ in the hospital and are never available to give the Mad Scientist or I a break. (Contrary to what most people think, having a young child in the hospital is kinda like a prison for the parents because the child will not allow you to leave the room, making getting food impossible or even a break, unless someone the child loves a whole bunch comes for a short visit.) X and Y hardly ever visit DQ.
I've been angry with X and Y for years now. I've discussed their actions with them and how it affects my family. The answer was "that is who we are". I would like nothing more than to cut them out completely, but that is not an option. It doesn't make it any easier on me and frankly makes me want to scream. I hate what they do to my family. And while DQ and TRex are too young to realize how often X and Y disappoint, they are getting older. That makes it harder. I know not to believe them when they tell me they will come, but when they tell my kids and don't come, how do I explain it? How can I explain to DQ that other people she holds in the same regard as X and Y visit her every single day in the hospital and X and Y can't find their way on any day? She will start to notice.
How can people who claim to love TRex and DQ so much constantly think of asinine excuses to stay away?
Monday, April 11, 2011
I feel like I've glimpsed the future.
Yesterday, DQ had to be placed on oxygen because of the RSV. That is not surprising. What got me is that just before bed, they gave her steroids for the first time this hospitalization. She did great and probably didn't need the oxygen, but I made it clear I wanted her to sleep, so the nurses let her be. She slept great! Her heart rate was closer to an average 3 year olds heart rate. She slept comfortably. It was as if she wasn't running a marathon in her sleep like she normally does.
DQ obviously needs oxygen. It helps. For the first time, I really see why the docs made her wear oxygen to bed last year. Her special lungs need the extra help and the rest of her body likes it. With the help, she could rest like a healthy child.
Today, DQ is in the best condition she will ever be. In the future, she will only decline absent some miracle. She will need more aids. I glimpsed the future and I believe my baby will need to go back on oxygen at night. Eventually, she will need oxygen during the day. I don't think we will hit this point any time real soon, but it is there. Since the docs can't fix her lungs, this is her future.
Sunday, April 10, 2011
Saturday, April 9, 2011
I am devastated.
When DQ was so, so bad in February, she had the metapneumovirus, which is the same kind of virus as RSV, but not quite as bad. These type of viruses are what scares me most. They are the hardest on her poor, fragile body. This virus is known to do such damage, that some children with healthy lungs before it, end up with asthma because of it. Knowing that my baby is being ravaged again by one of these horribly nasty viruses makes me want to SCREAM!!!!!!!!!!!!!!!
Friday, April 8, 2011
Usually, I feel fear or am sad if I think about this life my poor baby suffers, but right now I'm just angry. I am trying to fight the anger raging inside of me, but it is so hard.
I am sitting in the hospital cafeteria right now. My dad stopped by to allow this moment. The Dancing Queen was admitted last night and won't likely be released until tomorrow maybe. I am so angry that she has to suffer so much!!!!!! Life should not be this hard at 3. All she wants to do is go to the park and slide down the red slide. And she is so used to the hospital that she thought the only thing in her way was the rain. Then I reminded her she was trapped in a hospital room. Trapped to an IV. Trapped in this life that rips every single good plan from our fingertips. Trapped.
So I am angry now. My girl is sad. The only good thing in this is my total despair from earlier this week has been replaced with adrenaline to keep my baby safe and anger.
Thursday, April 7, 2011
TRex is supposed to be going with his Ma tonight to visit the Chef (5 to 6 hour drive). Now that is up in the air because TRex complained of a stomach ache twice AND he didn't really eat breakfast. That is never a good sign because where DQ never eats, TRex always eats. So, we are on the verge of having to tell TRex he can't go, thus disappointing him, the Chef, Little Car Guy, and Ma. And all of this on top of poor DQ being miserably sick.
I am totally spent.
Wednesday, April 6, 2011
Then, this happened:
Seriously. How does this happen? The Mad Scientist merely placed a pot of water on the cold stove top this evening and WHAMMO.
Now, we need a dishwasher, a stove, and an oven. At least we can switch to gas. Been wanting one of those since we moved into our house 8 years ago (it came with all of the kitchen appliances).
Now, if one of you can send the kitchen fairy my way, I'd be so appreciative.
Tuesday, April 5, 2011
Sunday, April 3, 2011
TRex: Maybe my dinosaur book is in here. You have to be quiet so we don't wake up Mommy.
DQ: Okay, TRex.
I hear the search. While my eyes were closed, I think it pretty much consisted of the two of them staring at the bookshelf. I heard not a single book get moved.
TRex continued in a whisper: It's not here. I can't find it.
DQ: I can't find it.
TRex: I need my libarry book. Where is it?
Me, thinking to myself "What the heck library book is he looking for? We haven't been to the library in months?"
DQ, tiptoeing and still whispering: "Maybe its in our room."
The two of them tiptoe next door, leaving my bedroom door open. Of course, once in there, they didn't need to whisper any more.
TRex, exasperated: I can't find my libarry book.
DQ: I can't find TRex's dinosaur book. Maybe its downstairs?
TRex: No. I looked there. It must be up here.
They tiptoe back to Mommy's room. TRex looks again (still with my eyes closed, but I don't think he pulled out a single book to look).
DQ could take it no more. She declared loudly "I can't find it. It's gone!"
This was when the Mad Scientist first realized the children were upstairs and instructed them to come downstairs so they didn't wake me. Too late! It was okay though because TRex was so serious in having to find his book. I forced my way out of bed and asked for a better description. All I was told was a dinosaur libarry book. I couldn't fathom what he was looking for. So, I pulled out all of the dinosaur books, none were right because then he told me it had a cowboy too. I was befuddled! But, then he said the magic words: "The book Grandma and Grandpa gave me yesterday!" Mystery solved:
As DQ played with her dolly, she decided to change her, but once we got the princess dress on, it had to be taken off immediately: "Silly Mommy, my baby can only wear pjammies."
I asked if DQ wanted dolly's slippers on and DQ decided that she needed slippers herself. What slippers did she need? Cinderella slippers of course. Nothing like a peep toe heel to keep naked toes warm!
That led to playing dress up. All four of us had to be princesses. TRex kept making all of us wear the princess earrings, but he refused to put them on. Why? "Because they hurt my ears, so you all have to wear them!"
Just recently, I overheard Dancing Queen insisting "I'm going to be a Mickey when I grow up." (That would be Mickey Mouse.)
Five minutes later, she asked if she could be Sally from the movie "Cars" when she grows up. I said "of course". DQ is constantly pretending to be some character. She and TRex remained characters from "Cars" for a good 45 minutes. They kept racing for the Piston Cup, but falling and hurting themselves, so they had to go to the doctor's office.
At lunch, DQ complained with a sad face, "TRex say 'poop' all of the time".
Oh the fun of a Sunday morning!
Saturday, April 2, 2011
One of the most wonderful things that has happened to me as a result of CHD and pulmonary hypertension is that I don't take my relationships for granted. I try to let the people I love know that I love them. There is no guaranty of a tomorrow for any of us. I know that now. It allows me to appreciate the ones I love for who they are. My core relationships are stronger as a result.
CHD has also deepened my belief in the goodness of people in general. I am an optimist at heart. I try to see the good as much as possible. I think we should all look out for each other, take care of each other. Unfortunately, with the political discussions that have been taking place in this country over the last several years, I didn't feel like society at large really cares to help each other. Everybody was out for themselves. But, because of DQ's CHDs, I've learned that perfect strangers care. They don't want to see my baby suffer. They will come together to help a little girl they have never met simply because she is sick. They will help our family because they care so much.
DQ's carepage has had close to 1,000 unique visitors and many who regularly read it. I know that the posts are also emailed from several people and forwarded on from them as well (I get emails from people well outside my circle that are a forward of a forward of a forward of a post). Other people have added DQ to their webpages for children to pray for and she has been on countless prayer lists across the globe. While I do not believe in a higher power, my heart is filled with gratitude and warmth for the care and love shown to my girl. All of these acts make me realize people do care and have made me appreciate everyone around me more.
The most humbling act of caring toward my family happened last year. It reaffirmed my faith in humanity more than anything. When we finally found a doctor to give us a second opinion regarding DQ's pulmonary hypertension and we had to fly across the country, my family jumped into action (and wouldn't let me say no) and threw a benefit for DQ. They raised a lot of money that allowed us to travel without the added worry of cost and to stay home with DQ as she prepared for surgery. We were beyond grateful for that help. But more importantly, I felt we were part of a community who was working to give DQ a better life or at least a chance at more life. We had strangers from off of the street see the banner with DQ's picture, stop by and donate. We had people read the fliers and just want to meet the amazing girl who had been through so much. My entire family came together with their friends to work on this amazing event for my daughter. They laughed and they planned, they accepted my co-workers and DQ's therapists into their embrace. Everyone rallied around my girl. Everyone wore shirts with her name. Seeing so much love in one place for my family reaffirmed my belief that people are good at heart.
Without DQ's CHDs, I would never have started the carepage, I would not have needed the support of the community at large, and I am sure I would be much more cynical and angry with society. Instead, I have hope.