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.

It's that simple.

Jimmy came home from being out of town for work on Thursday and had a cold and congestion. What do many of us do when this happens? Keep going, right? So he did.. I recall a few weeks ago when I was feeling so tired and snapped at Landon. I quickly apologized and told him that I was so tired but that it's not ok to yell even if you are tired and grumpy. I observed that Landon was also tired and grumpy and asked him what we should do. He answers quickly, "take a nap." What a concept, right? Landon has caught the cold that Jimmy has.. He informed me, when he woke today, that he should not go to school because he isn't feeling great and that he misses his friends and hopes that he feels better tomorrow. He told me that he needs soup, milk and a chocolate chocolate chip cookie from the bakery up the street. It was that simple. There was no "I got to keep going.. No time for rest." I feel like he has it right. I always say that my kids teach me more than I could ever teach them. And as he finished his getting better lunch, he said "Mommy, thanks for helping me get better."

A message

The message that we received today was "slow down..." We had a busy, fun weekend and to end it, Sunday night, Landon spiked a fever and started vomiting. We have been blessed that when we, any of us, have caught a virus it has been so quick. A reminder that we just need to slow down.. Mommy needs to call off work and we need to stay in our pajamas all day. It's a message that I need to sit on the couch with a little boy cuddled in my lap and watch Handy Manny while stroking his hair and kissing the top of his warm head. Maybe it's an excuse for me to sleep through the night without a loud ring at 2am reminding me to give Landon his medicine. He is yelling for me to put his Halloween costume on right now... Maybe today is just what we need.

Him or You

There is this song by Colbie Caillat who I refer to as my soul singer, Him or You. It's about a love triangle although when I title this blog post that the You is me. If you read my last blog post you that sending Landon to kindergarten was something that was very difficult for me to think about. I posted it and thought that I felt better. I really did.. That following Wednesday I admitted something to myself after everyone in the house was asleep. I was having a very hard time. I sobbed. I woke Jimmy and we talked about it. I told him that I need to just accept that this hard for me and move forward with it. "He is going. He will be fine and I will be fine..." I think. We decided at midnight that night that it made the most sense to wait a year and that there really seem to be no cons to waiting. So that's it folks... My boy will start kindergarten next year. The school supplies were bought and so was the back pack and lunch box. We talked to Landon and he was totally ok, either way. That's my boy. He is totally okay either way. Through all of this I became even more aware of the idea, "is what I'm doing for me, or for him." Let's face facts, friends. We say that what we do is for our kids. It's all about them, right. I don't know about you but I have moments, probably more than I even realize, in which its really about me. Stop calling me at night after I put you to bed! Is that about him, or me and my precious "me time." Stop jumping around in the line at the trampoline park! Is it about them or am I aware of the little girl in front of us who stands so still and patiently waiting for her sticker to go jump on the trampoline. I am getting better- I promise I am. I fall short though, and that's totally okay because I learn a heck of a lot when I fall. Yesterday, at the trampoline place, my big boy connected at the Dodge Ball area with a few kids his age. Connecting at a dodge ball area seems a bit concerning for a parent anyway, right? Kidding. Anyway, my perception was that Landon was being, well bullied, by his new friends who he was so excited about. Landon was anything but distressed but my adult brain "knew" that there may be a bit of teasing the smaller kid going on. I intervened only to check on my boy. I actually wanted to throw the ball at the kids and knock them off the wall that they sat on watching as Landon tried to get up- but I digress. Instead I went to Landon as he lay on the trampoline as they jump around him tossing him about and asked if he needed help getting up. He accepted my help and I bent down to ask him if he felt like everyone was playing nice. He said yes and that he was having fun just as one of the girls jumped at me saying "he said he is going to get us." I calmly told her that it didn't look to me that he was getting anyone but that the three kids seemed to all be getting him at the same time. I stated some of the things I saw and told her that Landon seemed to be okay with it but that it really hurt my heart. She confidently said, "are you his mom?" And I told her that I was, at which point she walked away. Later in the car, I asked Landon if it was okay that I talked to his new friend like I did or would he prefer that I not say anything. He said, "You don't have to say anything Mommy. I'm just having fun." I realized at that moment that it really was about me. I excused it by telling myself, and a few close confidants, that it worried me to think that he could be a kid that finds his place by allowing himself to be a target. But I once heard that stress occurs when we think too much about the past or too much into the future and that's what I was doing- thinking about what his future relationships may look like. The message I gave him was that I don't trust that he knows when something doesn't feel right because of my perception of what was going on in that moment. It didn't matter that he was enjoying himself and happily playing with his new buddies. So that's that... In that moment, it was about me. So I get up, dust myself off and will try again.

I worry, I do.

To Landon's Kindergarten Teacher, I am the mom of just one of the children who will sit in your classroom in just a few weeks. I want to tell you just a little bit about him and why sending him to kindergarten is so hard for me, his mom, although I know that it's hard for every parent. I know it's normal for tears to fill my eyes when I think about putting him on the bus and sending him to a school in which I cannot just peek in the window and grin as I watch him in circle time without him knowing. Landon has such a beautiful spirit. His mere presence lights up a room- well in my eyes it does. He takes on various roles and his day is focused on filling that job. Today, and for the past week, he has been "a police" and that we are "polices" (his dad reminds him that it is better understood when he said police man. I hope that you are able to get to know him well because he is pretty special. He wakes up each morning and yells "Mommy-- good moooorrrnnniiinngg!" I'm going to miss this because I'm pretty certain that I'm going to have to wake him up each morning. And, he calls for me over and over at night to delay bedtime. He does this only to me. Sometimes it's because bugs are on his pillow and he needs me to flip the pillow for him, or because he needs me to give him his teddy bear despite it being only an arm's reach away. He tells me he loves me and that he needs another hug and a kiss. He tells me it's because he has to go potty even though he went right before he went to bed. Cystinosis blesses him with the ability to squeeze some more pee out at any time. You may notice that his eyes get really big and he smirks a bit when he is embarrassed by the attention that he ironically was trying to get in the first place. He forgets some of his letters and begged me one day not to make him write "M" again. "I don't like M's Mommy, let's do something else," but he remembered that his aunt and uncle brought pumpkins to our house the first day that he napped in his big boy bed and that his aunt was so surprised to see him standing at the door. He was 2 1/2 then. I also want you to know that the fact that I actually can consider letting him buy lunch at school and that there are plenty of options of foods that I can pack for him is such a blessing. At one time, he depended solely on a feeding tube for nutrition and that his preschool teacher used to put a napkin in front of him to spit out the food that he put in his mouth. You may also be surprised to know that his first experience with school was traumatic for him and me. I remember clearly sitting on a kid sized chair in the hallway outside of his preschool class crying because he cried so hard that he threw up. I had to explain that he gets a feed right before school and that he only threw up because he was upset and not because he was sick. I knew it would be the first of times that I would have to explain how and why his needs are a bit different at times. I have to admit that I'm having a hard time because I'm so used to him being with me. I know. That's not unusual. But, to accept that I will not be the person giving him his 2pm meds through his G tube is something that I'm going to have to get used to. His dad and I have trusted less people than you have fingers to watch Landon and to give him his medicine throughout his life. I totally trust that you and the nurse will do a great job. There really isn't a doubt in my mind. But it's not going to be me and that is, well, something for me to adjust to. I worry about the bus... What if he drinks all of his water and needs more? What if he doesn't go to the bathroom before he leaves and has to go badly on the bus, a bus that will take 40 minutes to get to me. What if he has an accident because he can't hold it anymore. Oh, and his medicine has an odor that is noticeable at certain times of day. He told me recently that a friend asked him, "why do you smell all of the time?" We talked about it. I told him that it means his medicine is working and that if another friend says that, he can tell them. I worry.. I wish I didn't, but I do. So please know that I absolutely and totally trust that you will take great care of my boy. I will adjust and I know that he is going to thrive. But I worry. I do. With the warmest respect and regards, Landon's Mom

CRF Conference 2015

"Great things are brought about and burdens are lightened through the efforts of many hands anxiously engaged in a good cause." - Elder M. Russell Ballard Jimmy, Landon, Jordan and I packed our bags and ventured off to California last week. It was a 4 1/2 hour flight and a 3 hour time difference and every second of it was worth any stress that the flight and time difference caused. The boys did awesome although there were a handful of moments that Jimmy and I just looked at each other as we took deep breaths. Two tired little boys can be challenging but 85% of the time they did so well! We were there from Wednesday until Sunday and the conference events were held from Thursday evening until Saturday evening. Thursday evening there was a Mexican dinner on the beautiful patio of the hotel in which we stayed. Forty families were present at this conference and a whole lots of adorable children of varying ages. One mom described her son, on several occasions, as the cute blond boy. The irony of that is that there were a whole lot of cute blond kids there along with a couple of redheads (people with Cystinosis often present with blond or red hair and a fair complexion). So imagine, a herd of very cute mostly blond kids running back and forth along a patio as fast as they can. It was quite a sight and I was beyond excited to see some the other moms who I talk to on the phone, text and private message on Facebook. Friday began with one of my favorite parts of the conference but an absolutely emotional part of it. Families are asked to take turns standing in front of the group to introduce themselves and to present a paper dove cut out with words written to answer the questions of what is your hope/prayer or for what are you thankful. To summarize what Jimmy and I presented was that we are thankful for the Cystinosis community- for the love, the support and the friendship, and we said that our prayer is that Landon will never see his disease as making him less than or that something is wrong with him. We pray that he will accept and maybe even embrace Cystinosis in all of the lessons and silver linings that it provides. Such important information was provided this day and I don't feel comfortable enough to summarize much of it in this public forum simply because I cannot do it justice. What I will say is that we learned that the nanowafer that has been developed as an improved alternative to the eye drops may be ready to recruit for human subjects by December 2015. The study to find a cure could begin recruiting the first human subjects in about 8 months depending on approval from the FDA and the IRB (Institutional Review Board which is a group that reviews and approves research studies). Only a couple of people will be recruited at first and the criteria will be that the individual must be 18 years or older or could be younger and unable to tolerate one of the available drug therapies. There will be 3 phases of the study and phase 1 will take about 3 years to complete. My hope is that there will be a cure before Landon needs a transplant, but regardless of that, Cystinosis is just a part of Landon and whether the day comes that he needs a transplant or not, it will be okay. He is just right how he is made. And if he has the outlook that so many of the adults that were present at the conference have then he will believe just that. Friday ended with a gourmet cookout and a bunch of those cute little kids covered with sand and soaked with water. They had a BLAST! I wonder if any of them really ate any dinner at all. I sat by myself at one point and just watched my boys with such amazement that they are mine and that we were able to have this experience together. Saturday discussions involved information about muscle health and neurological concerns. There was an adult panel which was so memorable. They included a very special, selfless group of people who are so resilient and so happy and living life to the fullest. My heart was overwhelmingly touched by this group of people. One woman says that she volunteers and acts as a pin cushion so that they can learn more for our children. There was a fundraising panel that I was asked to be a part of. We discussed our experience with fundraising. Jimmy and I got lots of ideas and look forward to implementing them at our fundraisers to come. Saturday evening ended with the Natalie's Wish Fundraiser which is in its 13th year. I cannot even describe how wonderful this event is. It is so cool to watch the live auction take place and the generosity of people is overwhelming. $2.3 million was raised in one evening. Incredible, right?! We are just so thankful for what people are doing to better treatment and to find a cure for Cystinosis. We are so blessed- so, so blessed!