Just a mom, not a stalker...

It's been a while since I updated this blog and as I have said before, no news is good news. We had a fun and busy summer. I started my own private practice so have been figuring that out in lots of ways. Our big news is that Landon has started kindergarten. He is doing great so far and seems to enjoy being there. He is definitely happy to see us when he gets home but really does seem happy. Today was the first full day. His nurse invited me to come at lunch time, when he is due for his medicine, to give it to him while she observes. Quite frankly, she has worked in the ER and OR at Children's Hospital and she had instructions for how we do it so I am quite certain she invited me to come for my sake and not so much for hers! I can't tell you how eager I have been all morning to get to that school to see him. I dropped Jordan off with his grammy an hour before I had to be there and drove 10 minutes to school not forgetting to stop to grab a cup of coffee because we ran out and today is not a good day to not have coffee for this mommy. Oh, and side note, Jordan now calls me "Mummy" and it is the cutest thing I have ever heard. Anyway, I pull up in the parking lot and think to myself, "boy, I wish that they were playing at the playground" which can be viewed from the parking lot. Bummer! And then within a few moments, I see little people parade outside toward the playground from the school. *cue the angelic choir* I can't see them so I very casually drive down the driveway, not like a stalker, and I see my boy's "best friend" whose name he can never recall. Landon expressed a bit of worry last night about not being able to find his BFF and we talked about the possibility that he might not and what he can do if he doesn't. I looked behind the BFF to see Landon, marching with his backpack on and hanging on to his lunch box. Aghh!!!!! My boy!!!!! Then I hoped that they would find each other because of course Landon could never locate and connect his BFF without mom near him (despite the fact that they met and connected without me having anything at all to do with it). I made a circle and continued back up to the parking lot, choosing a spot that would allow me a view of my sweet boy playing. I watched. I texted BFFs mom to give her the news. And I cried. And cried. I was so grateful, and I missed him so much. I then left my spot to move closer to the school because I had a lot to carry and I didn't want him to see me prematurely. I sat patiently, making small talk with the school nurse (who is just perfect for the role she is in) and then I heard his voice. I walk out to see him looking a little worried. I squeezed him tight as he told me that he doesn't know where his lunch box and back pack are. The playground monitor informed me that they had dropped those items off at his locker (although I don't think he realized that and was worried that he lost them). We showed Ms. M how we put meds through his Gtube. It took a few minutes to look through a book and we squeezed again and parted ways. This is an adjustment for Landon but my sweet boy is so brave and so resilient- so much more than his mom. For the first time in my life, I feel like a piece of me is walking around separate. I am so grateful for the people who have been placed in his life during this transition because it feels like they were hand selected- from the bus driver, to his teacher, to the nurse. I feel some peace because of them and because Landon shows me all of the time that he is much stronger than I give him credit for.

Natalie's Wish Speech

I was given the honor to speak to a group of almost 500 people at the Natalie's Wish Event last weekend.. When a video is available for me to share, I will, but in the mean time I will post the words I spoke... To say that I am honored to stand here in front of you would be an understatement. My name is Lauren Hartz and my first son, Landon, was diagnosed with Cystinosis when he was 14 months old. I wish I could say that was the beginning of our journey, but it began well before that. I have memories of sitting on the kitchen floor encouraging him to take a bite of something, anything. My husband Jimmy used to call me from work to ask how we were doing and what Landon ate. He was losing weight- failure to thrive, malnourished. I felt like a failure. We had test after test to figure out what was wrong and kept getting the same answer. Our last guess as to what may be wrong was an endoscopy procedure and at that time, they collected a urine sample. Again, we learned that something else was not the problem. I was told that there is no medical reason why he wasn’t eating and that we needed to have him admitted to the Children’s Hospital in Pittsburgh for intense feeding therapy. I was told when getting instructions for admission that they were going to collect another urine sample. There was sugar found in his urine which was probably a fluke but they needed to be sure. That was the first thing they did and soon after, the nephrology team presented, like a small army, in our room. We learned a new vocabulary only several hours into being admitted… fanconi syndrome, cystinosis, transplant… It felt like a nightmare. They told us not to Google Cystinosis. Jimmy made me promise not to but my mind was thinking the worst. I did and that’s when we came across the CRFs website. Nancy quickly responded to my e-mail. Cystinosis wasn’t even yet confirmed and already we trusted her. She promised that amazing research was happening and that we were in this together. After the diagnosis was confirmed, Jimmy and I started talking about things we could do to raise money and contribute to research to find better treatment and a cure. We had to do something. We felt so helpless. Five months after he was admitted to the hospital, we held our first fundraiser, a Halloween party with our family, friends and others in our community. It was empowering and since then we have had 9 fundraisers and have raised $160,000. I don’t know that I can go so far as to call Cystinosis our blessing, but this journey certainly has been. There are moments that are so hard. It’s heartbreaking to watch Landon try his hardest to keep up with his peers when he plays sports, to see him become lethargic after too busy of a day, when someone comments on the smell that is caused by the medicine that keeps him healthy, when we see his Mic Key button causing him discomfort, having to hold him tight as he screams and cries during regular blood draws, and each time we lay him on our laps to give him eye drops. Normal illnesses that kids get put us on alert because we fear that he will get dehydrated and end up in the hospital. And let me tell you a secret, I’m traumatized from that month long hospital stay and anytime I think about going back my heart races and tears fill my eyes. But let me tell you about the blessings… The Stack family, the community of people who we have come to love so much that include people who I talk to regularly and who I consider to be my best friends, watching our family and friends work tirelessly to organize our fundraisers, the goodness and generosity that we witness all of the time, the lessons we have learned about what is important and about being grateful and present. Those are just few. Recently I had to change Landon’s Mic Key button which is so challenging. He screams and cries and begs me not to do it. Afterwards, I held my crying boy tightly whispering that I am sorry. He looked at me and asked if I know any inventors or magicians. Landon has a huge imagination so I wasn’t sure where this was going. He told me that he needs to find an inventor or a magician to help make his belly not hurt anymore. I felt tears fill my eyes and then found myself saying, “buddy, I know lots of inventors and magicians who are working hard to make sure that your belly stops hurting. They are the people that we will see in California.” To all who support Cystinosis research, I am thankful. To those who raise awareness, I am thankful. For those who dedicate their careers to finding better treatment and a cure, I am so thankful. And to all of you, who have made our cause, your cause too, I am forever thankful. Thank you.