I’ll be real honest…I’ve been struggling lately. There have been so many days that I have started writing something and walked away mid-sentence unable to put what I’m feeling into words. I just don’t know how to wrap my brain around all of the thoughts and emotions swimming around inside of me right now…But at the same time, I feel this overwhelming call to speak out and tell our story. So I’m just going to go for it…Please forgive all of the no-doubt countless grammatical mistakes and such. I just hope that you are able to see past the words on the page and really hear the words that are in my heart.
God has given me one of the most remarkable girls with a life that has been a constant uphill climb. Despite all of her tests and trials, she wakes up each day with a happy heart and a song on her lips. I promise that a day doesn’t go by that this girl isn’t singing. Her strength is both inspiring and overwhelming. She has gone through more in her childhood than most people will in their lifetimes. She faces each and every new challenge head-on with purpose. She really believes, as do I, that God gave her this path for a reason…we don’t have to know what that is right now, He will reveal it in His timing. I do know that I don’t know if other kids her age could handle all of this the way she has. Doctors are always waiting for her to be depressed or angry, full of self-pity and resentment. The day may come, and we would cross that bridge with her; but so far, so good. She has an old soul. Somehow she just gets it. That makes me sad for the lost innocence of a carefree childhood, but I have to trust that we will find the purpose in all of this someday.
She has been sick from the very beginning…she really doesn’t know anything different. Our difficult road with doctors began with that first pediatrician that told me she was too young to really have asthma. She wasn’t. First experiences with powdered cereal were fun – with allergic reactions that the doctors told us couldn’t be “real” allergies. Finally, when we started jarred baby food, her reactions were severe enough (with her skin in a constant state of being cracked and inflamed) that they said we should just avoid those foods. Still unconfirmed allergies. We began adding foods to that “Avoid” list until it just became categories…All berries, anything with Red Dye, that sort of thing. To prevent any accidental consumption, she had to be taught from the get go what her allergies were and what types of foods and drinks that meant she had to avoid. The saddest part of this process was the reaction she got from ADULTS at events when she would politely turn something down. She wouldn’t go into detail about why she didn’t want it, she would just say, “No thank you” so as not to call attention to herself. Later on, we started taking her a personal treat to parties to quietly have so that she didn’t have to completely miss out on the celebration. This was also a nightmare to navigate. People would accuse her of being a picky eater. People said she was rude for not eating the cupcake/cookie/cake. Others just tried making jokes about her being difficult or high maintenance. Even those closest to us have made hurtful comments about going the extra mile to try keeping track of her laundry list of allergies. Believe me, I know how difficult and frustrating it is trying to find things she can have; we live with it every day.
As her allergies and asthma were worsening, she was also starting to get sick with strange things on a rather regular basis. If even one child at church or gymnastics had something weird, she was going to get it. Then she started preschool. This was when it got real. I don’t think she has felt well since. Honestly, I’m not sure she even knows what that feels like…to really feel well. School meant constant exposure to sickness and germs. You see, you might sit in a room and not even notice a sneeze. You just say “Bless you” on autopilot and never even leave your trance or look up from your Facebook. I can’t. Every sneeze, every sniffle, every cough is a potential threat to her. I sit there trying to diagnose those sniffles and coughs in my head. Does that sound contagious or like allergies?? Did they properly cover their mouth and nose when they sneezed/coughed? Every scraped knee, splinter, turf burn leave her susceptible to infection. I don’t mean an infected wound requiring some ointment. I mean a systemic infection requiring IV antibiotics and probable hospitalization.
On our road to a diagnosis, we have been on one crazy roller-coaster of emotions. We have been told that she had Cystic Fibrosis. We had to wait days to schedule the test and then when we got there, the tech explained (in front of her) that the test was just a formality because she definitely had CF. We waited another 4 days, over an excruciating weekend, only to find out that she doesn’t have CF. We were told that she had Lupus. Another long wait for results…she doesn’t have Lupus either. She does have a cyst on her heart that we had to wait a month to find out if she was going to need open heart surgery to remove. Countless other times we have gone for testing of various horrific diseases, requiring painful testing procedures, only to find out what she doesn’t have. So many nights rehearsing in my mind what life would look like if the test came back positive. Only to end up in another dead-end, facing another Mack truck, with another possible devastating diagnosis and testing.
Finally last summer, a diagnosis…Primary Immune deficiency Disease (PIDD) and more specifically, Common Variable Immune Deficiency (CVID). I had never heard of that before. Well, come to find out, I had actually seen some of the Jeffrey Modell Foundation commercials but had never really paid them any attention. They didn’t apply to us, right?! Wrong. That was our answer. This would be the beginning of another long journey. For those of you, that are like I was (in the dark), Primary Immune Deficiency (PI) is a gene mutation that affects the B-cells and T-cells responsible for fighting infection and producing antibodies. This essentially means that part of the immune system is missing, or not working properly, from birth.
PI comes in all shapes and sizes since no two patients are exactly alike. PIDD is considered a Rare Disease by the World Health Organization. Only about 1 in 25,000 people, like my daughter, have CVID …and not many of these are kids. Unfortunately, doctors are trained to not go looking for the rare. They have a saying in the medical community, “When you hear hoof beats, think horses, not zebras”. They are taught, as a general rule, to focus on the likeliest possibilities when looking for a diagnosis, not the unusual ones. The fact is, zebras do exist. Sometimes, those hoof beats aren’t horses at all. The PI community has adopted the zebra as their mascot to represent this shift in thinking. The other cool similarity is that no two zebras have the same exact stripes; just like no two PI patients have the same exact symptoms.
We struggle with the medical community’s lack of understanding when it comes to Primary Immune Deficiency. Some doctors are still waiting for the horse to show up because they have no explanation for the zebra that is sitting before them. Others are worse because they claim to be well versed on PI, but then they continue to try forcing CVID into the same neat little boxes that they know how to deal with. I can’t tell you how many times we have heard that she couldn’t possibly have _____________ because her labs came back normal. I have to remind them that perhaps with her CVID, the numbers would be different or skewed from normal values. Sometimes they look again, sometimes they stick to their opinion, and sometimes they are wrong and she pays the price. Delay in treatment when she is getting sick, only means that whatever is attacking her has more of a jump start. That usually means, heavier antibiotics and steroids will be required…never fun.
I often find myself questioning whether or not we are doing the right thing and listening to the right people. I mean, when you are trying to come in out of the dark, how do you know where to start looking for the light switch? I had often prayed for people who had chronically ill children. I remember thinking how strong those kids and their parents must be to endure; wondering if I could ever find that kind of strength. I remember seeing scenes in movies that would depict a mom having to do something that caused her child pain for their own well being. I even remember saying that I didn’t think I could ever do that…I didn’t think I could ever hurt my own child; even if it was for their own good. Well, it isn’t easy, but I’ve learned that you’ll do whatever it takes to make them better; and you just pray that they understand.
Now let me tell you about my epiphany. We were at the hospital one day…one day that was the third day that week for more testing. I remember that day like it was yesterday. We were sitting playing with our Story Dice; making up stories (as usual) but on this day, her stories were sad and dark. No matter what I tried, not one of her stories had a happy ending. Frog waiting for a kiss from the princess? Nope, frog gets eaten by something and never gets his kiss. That kind of thing. I was sad for the first time in a long time. Please understand that if you take nothing else away from reading this, hear this…we truly enjoy our life. We are happy (most of the time) and joyful (all of the time). We have the most amazing family, and we honestly love being together. I’m not sure if other families genuinely enjoy each other the way we do, but I certainly hope so. We don’t wake up and count spoons, we don’t make sad videos with flashcards, and we don’t focus on what life can’t be…This is why her sour mood really stood out to me. She is always happy…maybe not ALL day every day but she is happy every day. She finds something that makes her happy in just about any situation. If you know her, I bet that you would agree. But not on this day, at this moment. As I sat there trying to figure her out, I watched a mother wheeling her adult son out of the hospital. He was wearing a mask, just like my daughter, to protect them from infection. He was just a shell of a man and most likely had cancer. I was heartbroken for her. I was angered at the injustice of her life…having to watch her son suffer like that. Then like a ton of bricks, my epiphany…I suddenly, for the first time noticed how the other people waiting in the area were looking at me. They were looking at us with the exact same look I had given that mother and son. I saw my daughter in their eyes and my heart broke. She sat pale and sunken in the wheelchair, curled in a ball, swallowed up in her baggy sweats, wearing a mask. I wanted them to look past the mask and see her strength and medical maturity, her acceptance of the road God has given her to travel, her amazing personality and sense of humor…I wanted them to see that she doesn’t go around feeling sorry for herself.
Do we all wish this away? Absolutely! It is a difficult road to travel when those around you can’t truly understand your struggles. The road is lonely and frustrating. We feel like we spend a great deal of time trying to explain ‘How she’s doing’ in response to a polite inquiry that just doesn’t have an easy answer. People mean well, most genuinely care, but they have no concept of how deep their question goes. In their minds, she was sick last week…Is she better? Let me see….yes, she is over what ailed her last week but she’s not better. They are still waiting for her to be well…Please understand that currently there is no cure for PI; there are treatments that can make the disease more manageable, but no cure. On top of that, infections and numerous other complications are pretty much a given for PI patients.
We live life with a chronically ill child. To have a single week in a month without some kind of medical appointment is rare. She has her weekly infusion one night a week. A bucket of medications is perpetually on our counter. I can’t remember the last time we left the house without a medical bag. But this is just our life. This is our normal. This doesn’t define her, or our family. We are learning, which requires time and adjustment. She lives as normal a life as is safe and possible for her…she goes to school, sings in the Honor Choir, plays volleyball, takes piano lessons, and lives in our pool pretty much May through September. Like I said, we don’t go through life focusing on what she can’t do. We make the things we can do that much better. We don’t go to movie theaters anymore; these days, we wait for it to be available on iTunes, and then we have the best family movie nights. We like to point out that at our home theater, the candy is better, the popcorn is better, the chairs with blankets are better, and we can pause the movie for bathroom breaks, but best of all…our great Danes get to enjoy the movie with us. I won’t even get into that sticky floor at the theater…
So, what is my point in writing all of this? Well, if you stuck with me and read this far, I hope you have a better understanding of what is going on with her and with our family. I need y’all to understand how hurtful it can be to be judged by the “normal” standard when we are living an “extraordinary” life. For instance, we have pulled back from our church attendance, not because we wanted to, but because being there was literally making our daughter sick. We can watch the sermons online…it isn’t the same and we miss the fellowship, but this cuts down on her exposure to infection. The judgment from fellow church members has been painful. I often wonder, if in my shoes, would they be able to sit and focus wholeheartedly on a service knowing that they were putting their child at risk every minute they sat among the people? Would they go anyway, the way they think we should? My biggest struggle is with prayer requests… I know that sounds awful but please let me explain. I would give anything for a miracle of complete healing…because please understand that is what it would take for her to be healed; a miracle. Do I believe that God could heal her if He wanted to? 100% On the other hand, we can’t live our day-to-day life expecting a miracle. Before you try to correct my approach, please hear my heart. My daughter is currently sick, she requires weekly treatment to keep her as well as she isn’t, and we must live with certain precautions to protect her from infections. Telling us to live each day as if she has been healed, just isn’t medically responsible. I equate that to telling a mom that she shouldn’t treat her son’s cancer because they should be expecting their miracle. Do I still pray for one? Yes! I also understand that healing might not be His chosen path for her. My prayer for her, and for our family, is for new research and understanding so that a cure can be found. I pray for protection and her health, and I pray for new treatments to be discovered that would improve her quality of life. Not waiting for my miracle is NOT a lack of faith on my part. If you want to believe only in miracles of complete healing, I think you might be missing her miracle. She has strength of character and compassion for others that only comes from trial. She has been an amazing witness of God’s strength and faithfulness to every medical professional she has encountered, and that is a lot. God has a huge plan for her life. Put yourself in our position, could your spirit handle waking up every day disappointed that it wasn’t “miracle day”? Realizing that God didn’t answer your prayer…I’m not trying to tell God the answer, we are living and celebrating the life He has chosen for us. So please pray for her; but pray for comfort, her health, research and a cure, her quality of life, her spirit…and a miracle.
After reading this, I hope that you are curious to learn more about PI and CVID. You may be wondering how you can help show support…Donate plasma if you are able. My daughter’s weekly infusion (SCIG) is immunoglobulin replacement therapy. Immunoglobulin (IgG) is the part of blood plasma that contains antibodies. Just to give you an idea, her small dose takes 8 plasma donors a week to produce. So that is at least 416 plasma donors a year just to treat my daughter. Blood and plasma donations help the PI community immensely. You can find some great information about Primary Immune Deficiency, CVID, and plasma donation at the following websites:
http://www.info4PI.org (Jeffrey Modell Foundation)
http://www.primaryimmune.org (IDF – Immune Deficiency Foundation)
http://www.donatingplasma.org (Information about Donating Plasma)
I think my last point to all of this is friendship. In our busy world, we have started using, “How are you?” as a synonym for “Hi”. Since I lost a few people in my life to suicide, and all of these struggles in our life have intensified, I have purposely tried to stop doing this. If I don’t have time to stop walking, look you in the eye, and REALLY listen to how you are doing, then I will just say “Hi”. We need to watch the weight of our words…if you ask me how I am doing, I’d like to feel like you care to hear my answer. I don’t want to say, “Fine” or “OK”, when I’m really not. I understand that we are all busy…so just don’t ask if you don’t want to hear how I am. It’s really OK not to ask every time we see each other. Just understand that I am at a place now where I feel we, as a people, need to be seeing each other and trying to show more compassion. If I ask you, I really want an answer. If you ask me, be prepared to get the real answer. Deal? In this same vein, if you don’t fully understand something that we are going through, and you would like to, please just ask. I’m certainly not a doctor, but I do feel like one some days.
Thank you for reading this and for your love and support. I sincerely hope that you have a better understanding now of where we are in our journey. Please follow her example, always look for something that makes you happy every day. We appreciate your prayers and your friendship…we are so blessed by our family, friends, school, and church community. If I have hurt anyone’s feelings with any of these words, please forgive me, that was never my intention. At no point was I thinking of any specific individuals when writing this, only circumstances and events. We love you all.
Look out for the zebras in your life, they truly are special. If you are a zebra, kudos to you for living each day zebra strong.