International Rare Disease Day is tomorrow, February 28, 2014, and by now, after nearly six long years of sharing our story, you likely don’t need me to tell you any more about Citrullinemia. I’ve blogged a lot in the past about Rare Disease Day so if you’re interested in those older posts, you are more than welcome to check them out here, here, and here . Hopefully, if you have been reading long enough, you already know the basics about Urea Cycle Disorders and all that living with the disorder entails. I’ve been pretty open here, though more so in the beginning, about Corrigan’s triumphs and struggles with Citrullinemia and brain injury, and I hope that this place on the web has been a positive thing for UCD’s.
That being said, I do want to commemorate the week, alongside thousands of other families, because it is important to continue to share our stories and bring awareness to the more than 7000 rare diseases in the world. So if you are new here today, the links in the first paragraph should help you out and, as always, if you are interested in more information, please visit http://www.nucdf.org or http://www.rarediseaseday.org
Recently I blogged about the financial cost of rare disease, as it pertains to Corrigan’s disorder, and today I thought that I might share about the emotional costs of rare disease but I think that on International Rare Disease Day, I will keep this post more positive. Instead of talking about the harder things, today I want to talk about being thankful.
I won’t sugar coat it, rare disease has been the hardest thing I have ever had to face in my life and I am not even the one with the diagnosis. I’ve never felt fear like I have facing down something that could take my child from me. I’ve held my breath for countless hours waiting on labs, waiting on rescue meds to hurry the hell up and get here already from the pharmacy. I’ve watched my baby fly away from me in a helicopter, or driven away in an ambulance more times than I could have ever fathomed. I have seen misery, pain and absolute despair in Pediatric ICU’s and ER’s. I’ve stood witness to awful things in those places but I’ve also stood witness to humanity and love.
And even among such challenges we face, I have seen such gratefulness. Parents of sick children are some of the most thankful people you will ever meet. We are thankful for the medicines that flow through our children’s veins. We are thankful for specialists and people that donate blood products. We are thankful for a nurse bringing us a cup of ice water at 11pm and for an extra pillow to help pad the fold-out couches. We are thankful for the smallest victories, when tiny tongues finally master a consonant sound, or when spoon+food finally makes it to mouth. We are thankful for Birthdays more than you could ever imagine, knowing that another may not be in the cards. We are thankful for hot meals and prayers. We are thankful for organ donors and paramedics. We know the flip side of every blessing.
We didn’t get here, to year six, alone. We couldn’t possibly have. So today I want to send a few shout-outs into the digital ether… to people that will probably never see this post in a million years, and maybe a few that will. I haven’t a plan for the things I will share from here on out, just a brain full of memories and a need to say “thank you” in some way.
I will start from the beginning…
Thank you to the Physician’s Assistant who heard my plea, who understood that my instincts were firing full throttle, and agreed to keep Corrigan overnight in the nursery when he was three days old. Because you listened, he is here today. I believe that completely.
Thank you to the PICU nurse who stopped me from collapsing in the hallway after a cold and heartless transport team-member told me that yes, there was a good chance my baby would die, as they were loading him into an incubator to fly him to Baltimore. You lifted me up, you gave me strength with your words, you told me to never give up fighting and today, I still fight when sometimes all I want to still do is collapse. I think you’d be proud of me.
Thank you to the Pastor who came to the ICU from the local rescue mission. We were from out-of-town, we knew our church family was praying constantly back home, but you came to my baby’s bedside after hearing of him and you prayed words that I know went straight to God. You walked in, put your hand on my shoulder and told me to fear nothing. You have no idea how much your actions and words that night soothed my soul.
Thank you to friends and family that began prayer chains in Corrigan’s name. Churches all over the world were praying for him that week, and many still do today. I know that this world will tell you that your words whispered to a faceless entity in the sky are useless. I know that people will say that modern medicine saved my son, not The Lord but I believe that everything you sent up in Corrigan’s name was heard and that yes, modern medicine and amazing medical professionals saved my baby, but your faithfulness…your obedience…pleased God greatly and because of that Corrigan was, and continues to be, blessed.
Thank you to my sister. When Corrigan was born, you were parenting two elementary school-aged children of your own and when our lives were turned upside-down, and the ambulance came, and I still had a child at home who needed a parent, you stepped in. You stepped UP. You gave up your life for twenty-one days to take care of my oldest boy. You fed him, you cared for him and you loved him like your own, while your own family was hours away without you. You attended fifth-grade graduation in my spot, you took photos, you stayed positive for Connor. Because of your selflessness, Mark and I were able to completely focus on Corrigan. Not for a single moment did we have to worry about Connor’s day-to-day needs because you handled it all efficiently and without complaint. Mark and I are so thankful for you, sweet sister.
Thank you to the local businesses that heard about Corrigan and put out donation jars to cover the cost of our travel expenses and missed work. Those donation jars helped so much as we traveled twice-weekly to Baltimore and let us focus on the needs at hand. I worked in the mall for more than 17 years and met some amazing people inside of that building over the years. Even today, though I am not able to return to work, I miss you all tremendously.
Thank you to the coordinator that walked by Corrigan’s hospital room one lonely night- so many years ago, and heard Corrigan screaming as per his usual and came in to check on us. I know that sounds silly, but that was a horrible stay- one that had me literally pacing the unit for every single minute of the dark and lonely night as my baby wailed in my arms. I was at my wits end when you walked in, and my brain was full of thoughts as dark and as miserable as that evening. Thank you for talking me down. Thank you for not making me feel crazy. Thank you for holding my baby so that I could sit for just a minute. Thank you.
Thank you to our local hospital. If you’d known the amount of doubt that Hopkins had about your ability to properly care for Corrigan, you’d be totally offended but you proved them wrong. They told us that we had no choice but to move closer to Baltimore, that he would certainly be in danger if we stayed, but you stepped up. You agreed to do whatever it took to stabilize him, ordering a very expensive drug to keep in stock specifically for him and working quickly whenever we walked in. Your Emergency Room staff are angels, no lie. Sure, over the years, there have been some errors and some staff that have not been compatible with our situation (which has also happened at Hopkins too), but most in the department know that time isn’t on our side when the chips are down, are trained in how to stabilize him, and do everything that they can to protect his brain. You are champions, in my book.
Thank you to the therapists who came to the house week after week, month after month and never made me feel as if Corrigan were anything but perfect. Your smiles were so needed. Your enthusiasm so wanted. You told me over and over that as long as progress was being made, we had reason to celebrate and that no matter how small the achievement, a win was a win. Thank you for the homework, for teaching me, so that I could teach him.
Thank you to the National Urea Cycle Disorders Foundation, more specifically Cindy LeMons. Thank you for your tireless efforts to bring awareness to Urea Cycle Disorders and raise funds for research towards treatments and a cure. Cindy, thank you for listening to me. For teaching me. For never sugar-coating the truth, but never focusing on the negative. Your vast knowledge, and willingness to share that knowledge, is so important when dealing with a disorder so rare. Day or night, email or phone, you always answer the call- for both new families and “oldies” like me.
Thank you UCD families. Oh my word, where would I be without you? The internet can be a scary place and especially so for the newly diagnosed. But it can also be a place of great support and understanding and I am so thankful to live in a time when social networking makes uniting families of rare disease so much easier than ever before. Thank you Murissa and Richard, for showing us that there is a great big life out there in spite of Citrullinemia. Thank you Amy, for taking my call and answering my questions, you were the very first parent I ever reached out to online. Thank you to so many others who have kept my inboxes and message windows full for the last six years-who talked me down and lifted me up. You understand completely what this journey entails and you know it isn’t always pretty. We are all so different, but together we create this safety net for each other that makes us all feel like one. I never feel alone because of all of you.
Thank you to so many others too. Too many to list here, so many memories and faces swimming through my mind as I type. Thank you Dad and Mindy, you always make sure you are in the ER to greet Corrigan if I’m not able to travel with him by bird or box. Thank you Dad, for always making sure I am fed, have a big, strong hug and someone to talk to. I love you. Thank you to friends that picked up the slack on things like rides to practice and games for Connor whenever Corrigan was in the hospital. Thank you Mary Anne, for rides to Baltimore when my car is acting stupid and keeping my pantry stocked with coffee and sugar (priorities!). To my Mother-in-Law who would make sure the house was clean after a long hospitalization and take care of our pets when we are all out of town, and to my own Mom who always races up to the hospital to sit with us when we are local. Thank you to those of you that sent gifts for Corrigan, or a check out of the blue. For thinking about us, checking in on us when you haven’t seen us for awhile. Thank you for still inviting us to things, even thought we almost always decline, things can still be difficult and staying home is sometimes easier. Thank you for not forgetting that we still want to be included but that life threw us a curve that prevented us from being part, and not judging us for that. Thank you for allowing our friendship to be a cyber-one, at the very least, and understanding when I maybe wasn’t the best friend back.
And finally, thank you to those of you who read here. Most of you are probably my friend or family, but I see a lot of hits from all over the world in my blog stats so I know there are many many many of you out there following along, for whatever reason, and have been for years. Thank you Brazil, and Germany and Canada and Australia and Ukraine, you folks show up the most often and you make it so that I don’t feel like I am talking to myself here. Because you stop by, I keep talking. I keep sharing. I don’t know how you found me, but I am glad you are here.
I know that I am forgetting so much and part of me wants to delete this entire post for fear of alienating someone who gave and was not mentioned, but I am only human and I’ve spent a lot of years sleep-deprived and running on giant bowls full of anxiety, so my memory isn’t as good as it once was. If I forgot to mention you here, please show me a little grace, and know that it was not intentional. I am positive that I will be in the shower later, or riding to the grocery store tomorrow and will suddenly remember something, or someone, and freak out that I didn’t properly put it here. If you sent something, said something, did something, prayed something- THANK YOU. I may not remember it right now, but God does and He will richly bless you for your kindness.
Anyway, Happy Rare Disease Day! For more information on rare disease, please visit http://www.rarediseaseday.org/. Remember, alone we are RARE but together we are STRONG!