Back to School for Maddox!

He was so excited today! This boy loves school. He loves his Teacher. He loves riding the bus. He loves snack time. He loves it all. 

That's something I love about this boy. Nothing he does is half-hearted, he's  all in! (Well that 'pun' was unintended, but highly appropriate.) Maddox has so much energy and emotion with everything he does. Nothing about him is calm or quiet. It's impossible to keep a straight face around him. Even when he's making me crazy, I have to smile at his enthusiasm. 

When he got home he told me all of his friends stayed in his backpack all day and it was crazy. Of course we are talking about friends of the imaginary variety. He also said there was just one boring part and that was at table time. His favorite part was playing with the trains from Chugington. 

Hopefully he will continue to love school! He will start having PT, OT, and speech next week. I'm looking forward to helping him progress to his potential. 

Back to School!

Bai started school last Tuesday. She is in 2nd grade!! I cannot believe how fast time has gone and how much she has grown up. I'm excited for her. 2nd grade was my favorite year of grade school and Ms. Carole was my favorite teacher! 

Bai was really nervous about going back to school. She absolutely adored Mrs. Casper last year. Mrs. C moved to third grade this year, and Bailee really wanted to just skip 2nd and go to 3rd. 

Then we went to meet her teacher for a reading assessment and Bailee's reaction was classic Bai. "Mom. Ms. Pfister isn't how I thought she'd be. I actually like her."

I was a bit worried when we walked into the classroom. It was decked out in all things superhero. Maddox was in heaven. I wasn't sure what Bai was thinking. Afterwords she told me she wasn't too sure about the superhero stuff, but maybe it would be fun. 

I eavesdropped on the assessment. I think Bailee is mature and bright for her age, but I always wonder if that's just because I'm her mom. It was nice to hear Ms. P tell Bai how impressed she was with Bailee's answers and how quickly she reads. When we were leaving Ms. P told me that Bai is really bright and she would have to test her much higher the next time. I told Ms. P that she has been bored in school and I'd love any help we can get to make it better for Bai. I worry she will end up disliking school because it's boring. Hopefully we can have a great year. 

Bailee brought home her first homework packet for the year. She was super excited when she read the suggestions for studying her spelling words, and saw that one of them was to give her parents a spelling test. Lucky me! I love the different suggestions they gave, and that the instructions specifically say to let her decide how she wants to study them. I bet I take a lot of spelling tests this year!

Maddox starts school tomorrow, so I'll have to get a first day picture of him then! He will be going 4 days a week! Between school and bus time he'll be gone about 4 hours! He's really excited, mom has mixed feelings. 

Why I talk so much about Maddox

I sometimes wonder if people get tired of hearing me talk about Maddox and his heart. I wonder if it comes across as me whining about our trials, or even that I believe that our trials are harder than others. I do realize that people who know me well know this isn't the case, but I still wonder. 

So why do I talk about it so much? Why do I reflect often on his first year? Why does my brain associate certain dates with specific hospital days? Mostly because I'm still shocked that this happens to people. I mean, truly, babies are born with half their hearts gone? Seriously? It never crossed my mind. I'd never heard of such a thing. I was completely and utterly blindsided. 

Knowing what I know, that's really ignorance on my part. For reals. My husband, the father if my children, has a CHD. It never occurred to me that I should write that on my prenatal paperwork. Honestly, until we had Maddox, I didn't even really get what Luke having a CHD meant. I knew he was supposed to have yearly check-ups, that he couldn't be self employed because we could never afford to self-insure him, and that at some point he'd need a new heart valve. I get it now! But for nearly 5 years I was completely oblivious to that reality in my life. 

Another reason I talk and write about it so much is writing is therapeutic. Writing things down and getting it out helps me deal with the emotional roller coaster of the unknowns. By writing things down and reviewing the past, I get to see more clearly the blessings and tender mercies of this experience. I truly believe it also helps combat the PTSD that encroaches. Especially during the second year. Emotionally, that has been the hardest of the four. 

The last reason, besides the fact that I think Maddox is amazing, is that reading about other kids and families living with CHD helped me so much. If reading about our experience helps even one person, it's completely and totally worth it. 

Having Maddox has sharpened my perspective in so many ways. A conversation I had with a doctor yesterday reinforced that. The doctor called to tell me that he believed I'm going to lose this baby. Oh yeah, so I am/was pregnant. Yesterday I was seven weeks. I've been having signs of miscarriage and have been getting my blood drawn to see what's going on. As he talked to me, this is not my regular doctor who knows me--he was in the office when I needed to be seen, he kept asking how I was handling this emotionally and telling me it's ok to be sad and disappointed. I replied that we've been through much worse. That might be the wrong choice of words. Maybe we've been through much different is a better way to say it. 

I am sad. Very sad. And disappointed. But if I've learned anything in the past four years, it's that Heavenly Father will take care of me and my family. In His time and in His way. For whatever reason, now wasn't the time. I trust that when the time is right we will have another baby. Until them, I will continue to love the two I've got fiercely. They are the light of my life. They are both incredibly gifted and talented in their unique ways. 

Thoughts from Hollywood

I watched this video yesterday of a speech Ashton Kutcher gave at the teen choice awards. (My first thought was that he's a little old to be getting an award at the teen choice awards. Then he commented on that award being the old guy award. And then I saw Kevin Bacon in the audience, and Ashton didn't feel quite as old.) I didn't know what to expect, but I was impressed. He shared 3 lessons he's learned that I wish we all would take to heart. 

1. Opportunity looks a lot like hard work. 

2. Being smart, kind, and generous is sexy. Everything else the world calls sexy is crap. 

3. Build a life. Don't live one. Build one. 

He said 'Everything around us that we call life, was made by people who are no smarter than you.'

So many of the kids I know, my 7 year old included, latch on to what Hollywood tells us about life. How to dress, how to act, how to treat people. Unfortunately, most of the examples they see are not very good. We need more messages like this coming from these 'stars' that our kids look up to. 

I realize that as a parent it's my job to provide good examples (from myself and those I surround myself with) for my children. Despite my best efforts, they still will also look to the world and see the good and the bad out there. I just hope I can guide them towards recognizing the good examples and steering clear of the bad. 

I hope this link works. If not, just google it. 

http://thenosebleeds.com/ashton-kutcher-reveals-real-name-gives-incredible-speech-at-teen-choice-awards/

Thoughts I've been pondering

I'm having a hard time sleeping tonight. I've been thinking about death and gifts and sensitivity a lot lately. I'm no stranger to the loss of children. While I haven't personally lost a child, I've seen far too many go to heaven. 

My big sister went to heaven when I was just 6 months old. You might think that I was too young for that to have a profound impact on me, but I can assure you it's not. Having an angel sister has been a source of sadness and happiness over the years. I know she watches over our family, and that makes me happy. There were many times growing up I remember thinking 'I shouldn't have to do this. I shouldn't be the oldest here.' Even now, my sweet Bailee will say things like 'Well, you aren't really the oldest in your family.' I remember odd times in my life being struck with grief over my loss, and feeling guilty because I didn't really know my sister, so why am I feeling so sad. I do have one memory. I only know its a memory because while I was in grade school I remembered and then asked my mom about it. I remember sitting in my crib and Tiffany, my angel sister, handing me toy food through the bars. When I asked my mom about that, she told me that Tiffany used to do that, but she hadn't ever told me that. I've had dreams of calling out for her. I've had moments where I've missed her so much it hurts. I'm grateful for the knowledge and hope that I get to see her and be with her again. 

That was kind of a tangent. What I've been pondering is my need to give a gift when someone has lost a child. Why do I feel this strong need? Have my gifts been insulting and more hurtful than helpful? What drives that desire? I know I can't make anything better by my small offering. I've thought more about this in the past 4 years because of the associations and friendships made on our Heart Journey. I've reflected on the gifts I've given, and have wondered how they were received. I've never intended to be hurtful or insulting, and one of my greatest strengths and also weakness' is analyzing what I say and do before I say or do anything. I will probably never know, but I do hope I can be in tune and sensitive. 

An angel mom, and sweet friend, made a comment the other day that I've been pondering. She said 'People hate my life, so they send me stuff.' Is that why? For me, is that why?

The first gift I gave to a family whose child went to heaven, while I was in high-school, was a poem. I sobbed as the words poured out of me and onto the paper. (I used to have that gift, maybe it's still in me somewhere.) I shared that poem with a friend who encouraged me to give it to the family. I hoped that it would give some measure of comfort. I doubt I'll ever know. One of my dads aunts wrote a beautiful poem when my sister went to heaven. It still brings me comfort today. All of these years later, do they have that? I'm not sure what I would have done. 

The second gift was almost 4 years ago. A sweet boy earned his wings after a valiant fight with CHD. He was 6 months old. He was a darling, beautiful baby. I didn't know the family well, but there is an indescribable bond you form with people fighting side by side with you in the hospital. It was close to Christmas, and it seemed an ornament for their tree would be a sweet memorial. Was it? Is it? 

At holidays we always had some little token for Tiffany. Her stocking hung at Christmas time, an Easter basket like the rest of us. For years I would gather flowers as I walked to my Grandparents, after school, on or as close to her birthday I could get. I would stop at the bridge over the ditch where she drowned and drop the flowers in. Later, when I had money to spend, I would buy balloons and release them on her birthday. One for each year she should have been. I never told anyone about that. 

The third gift was for a mother I had only met a few times. Nonetheless, I admired her and had looked forward to getting to know her better. Then their family suffered the unimaginable tragedy of not only saying goodbye, but doing so very far from home. I had an idea, and ordered it right away. At the time I thought it was a sweet token. A piece of jewelry with a monogram and a charm. Now I'm not so sure. I kind of think, had I been her, I'd have thrown it in the trash. Another reminder that her baby was gone. 

The last gift was much more personal to me. I had grown to love this angel through the family blog, and through many hospital visits. Their journey with CHD had given me so much hope when Maddox was born. They showed me we could make it through this unexpected diagnosis. That our baby could live and love life, like theirs was doing. I watched this angel grow and touch so many lives. Then their world crashed around them, but they didn't quit fighting. I visited many times in the hospital, and though I wished with all my heart they could be at home, I looked forward to these visits. This angel knew how to live and to fight. She was so full of spunk and sass, you couldn't help but smile and appreciate life when you were with her. One day I found this charm bracelet that I just knew was meant for her. It had a little heart on it. I watched as she opened it and her eyes lit up. I remember her little squeal and her asking her grandma to put it on. After that I was on the lookout for the perfect 'new' heart to add when her angel heart came. That never happened. I was on my way to the hospital and looking forward to that visit when I heard the news. I was crushed. I still think about her everyday. I gave her mom a charm for the bracelet. It's not the one I wanted to give. I think I'd have thrown that away too. 

I have one more gift. It's been sitting on my dresser for months. I hesitate to give it. The anniversary is painful enough. Our lives will forever be entwined. I will never go a day without thinking of this family. That was a day of such great loss and pain, and a day of miracles. It wasn't how either of us planned to spend it. We passed each other, hour after hour. Giving encouragement. Praying for each others child. Sharing a hug I will never forget. A day when relative strangers were bonded forever. 

So my inner battle is this: Are these well meaning gifts more hurtful than thoughtful? With each one I felt inspired and had the desire to give the gift. In the end though is it for me or for them? While I believe my intentions are good, what am I hoping this gift will do? It's not going to bring back their angel. It's not going to make it hurt less. Is doing something better than nothing? Is it better to wait for a birthday or anniversary, to let them know I haven't forgotten? Or is it completely selfish to think that someone remembering will make the loss a little more bearable? 

My heart hurts for these families, and so many others every day. It's hard not to get bogged down in the sadness of it all. I just really hope for two things. First, that I can be very sensitive to family and friends who have suffered such a great loss. Second, that if the time arises that I am faced with the unthinkable, I can handle it with the grace and love of these mothers. I think of you and your angels every day. While I'm certain that most if you don't read my blog (anymore), if you happen across me know that my heart was in the right place.