Square One

IMG_3231I have taken my son to an allergist every year since his food allergy and asthma diagnosis at age one. And every year, I sit with his doctor and we go over his test results, talk about how to manage his medical conditions, get medication refills and new forms signed. But this year, for the first time in a long time, I sat there next to my freckle-faced, athletic, smart, empathetic and whip-smart funny son and CRIED. Why? Because I was told his asthma is far worse than it should be for a soon-to-be 12-year-old boy, and that his lungs are literally failing him. FAILING HIM.

I’ve written on this blog for many years about John’s severe food allergies. I’ve traveled the country to talk about food allergy awareness and advocated loudly for change in school policy. I’ve written cookbooks and taught cooking classes. But what I haven’t always shared is our battle with John’s asthma. Not because I didn’t want to. But because I didn’t know how to. Talking about lung disease has never been easy for me. I lost my father when he was 52 to lung cancer, my mother to emphysema/pneumonia at age 59, and I have battled my own asthma and chronic lung infections as well as my siblings. When John was diagnosed at a young age with asthma, I thought I was prepared to deal with it. I thought I knew how to manage it. I was wrong. I had no clue.

Today John’s doctor had a “coming to Jesus” discussion with John and I. Based on his updated lung function tests, his levels were triple the normal amount in a child his age. In other words, his severe asthma at age 12 could likely lead to COPD (Chronic Obstructive Pulmonary Disease) by the time he is in his 20’s and 30’s (an extraordinarily young age for this disease) if he continues to not aggressively treat and manage his asthma every single day. At this point in our conversation, she didn’t address me, but HIM. My preteen son, who more often than not is forgetting his Epi at home, eating things without checking and not taking his daily inhaler. Full disclosure: I have been gone and an absentee mom all summer traveling, going to school etc. and haven’t been checking as closely with his asthma medications. I feel totally responsible for the continued deterioration in John’s lungs. A horrible, horrible feeling.

She looked at John in the eye, and asked him, “do you really want to live a life with daily meds, steroids, oxygen tanks, and giving up an active lifestyle because you can’t walk a flight of stairs? What if you couldn’t shoot a basket or play a game of soccer? Do you want to give up the things you love because you aren’t taking responsibility for your life today? Don’t you think at your age you should become responsible for keeping your Epi in your own pocket and remember to take inhalers on your own in the morning and night?

She then looked at me, and told me flat-out that John’s lungs are in unusually bad shape for a child his age with no other environmental risk factors. She couldn’t believe that he is a starter for his travel basketball and soccer teams, and most of the time plays entire games without ever getting called out. She said the inflammation in his lungs is severe; a normal level is around 10, his is 65. She said not treating his asthma now while his lungs are still developing will guarantee COPD at a young age, an irreversible disease. She explained our hearts are our body’s engine. But engine’s need fuel…which is our lungs. Without the fuel (lungs) our engines (heart) stops. She also reiterated that based on John’s lungs, a simple cold to him could keep him in bed for weeks, or in the hospital, and continue to damage his lungs permanently. Based on today’s results, his daily medication was increased to the max for a child his age, in order to aggressively start reversing this damage. Next course of action….using medications approved for COPD.

I sat there painfully numb. As she described images to John of people with COPD taking steroids and using oxygen tanks, I immediately flash backed to my own parents’ lung diseases. As she spoke to John, I remembered my father’s lung cancer destroying his entire body and mind in a matter of months, faster than I could even process at age 14 that he was going to die. And disintegrate into someone I barely recognized. I then remembered my mother, my best friend and angel, going into the hospital December 23, 1996 for a back injury (brought on by the overuse of steroids to treat her emphysema) and never coming out. I remembered her weak body and lungs contracted bacterial pneumonia not once but twice while in the hospital, putting her into intensive care. And then ultimately, her heart stopped. Because the fuel (her lungs) ran out. Just like John’s doctor described. Then I sat there and sobbed quietly because I thought, not only did I fail to help prevent my own mother’s death by demanding her to quit smoking or get healthy, I didn’t check in on my own son for his daily asthma treatment. Here I was, running around doing this and that, only to find that I was failing my own son at home. In a moment, I felt such shame it was unbearable. Last year I first learned of the severity of my son’s asthma. This year I learned it got even worse. Under my watch.  I realized nope….I can’t do it all. No way.

John told the doctor, “I thought all these years my food allergies were the thing that could kill me. Never really thought about the asthma”. She reminded him that BECAUSE of his SEVERE asthma, and because of his SEVERE food allergies, he would go into anaphylaxis into SECONDS. Mere seconds. My son could die. In seconds. Barely enough time to remember where the hell his Epipen was if he maybe forgot to take it with.

Today was extraordinarily painful for me as a mother. Because I remembered what it felt like to watch my parents struggle with their health. I realized I failed in balancing my school and work and family life. And I remembered that advocacy, education, and awareness starts at HOME. It starts with me. It starts with John. BUT it also starts with my husband. It starts with his brothers and sister. It starts with all his aunts, uncles and cousins. It starts with his teachers, his friends, and his coaches. I can go talk at conferences, and schools and where ever else for years. I can hope that PTA’s and school nurses and moms who demand birthday parties at school will open their hearts a little wider with understanding for the health and well-being of these kids with medical disabilities. But none of it, and I mean NONE OF IT matters if we don’t start right at home. Something I personally needed to remember.

http://www.lung.org/associations/states/illinois/news/the-link-between-asthma.html

http://www.webmd.com/asthma/news/20100517/childhood-asthma-linked-to-risk-of-copd

http://www.health.com/health/condition-article/0,,20268528,00.html

http://www.lung.org/lung-disease/copd/

 

42 Responses

  1. Kelly, I am so sorry to hear about John’s condition! You are amazing and I know will help John to turn this around. I wanted to personally thank you for sharing your story. Your “coming to Jesus” discussion certainly sparked my own “come to Jesus” moment and I’m sure will help others. You are not alone!

    My son’s lungs are at 60% and I have not helped him manage it. We have been focused on food allergies, avoidance and Epi-pen safety. I will making sure my son starts to take his asthma meds and get a Dr’s appointment for follow up. Thank you for taking the time to share your story, and please keep us posted on John’s progress!

  2. Kelly, I am so very sorry about your son’s asthma condition. I can’t imagine how heartbreaking this is. I hope that the support and good wishes of so many people who haven’t had the opportunity to meet you in person, is in some very small way a comfort or encouragement for you. Your book and your blog have been incredibly helpful to my family. You’ve done so much good for others. I’m sorry that all I can offer are my heartfelt wishes for a speedy and substantial improvement in your son’s health.

  3. Kelly,
    I’m sorry to hear this news. I can’t tell what date you wrote this, but I’m assuming fairly recent. When I don’t wear my food allergy hat, I wear my American Lung Association hat. I am a past officer on my regional board and sit on National committees. I too have lung disease in my family. Lung disease makes me feel out of control. I can control my environment my home for food allergies, but lung disease is harder and different. I agree, it does start at home. When my son was diagnosed with asthma I pulled up carpet, said good bye to curtains (hello wooden blinds) and any triggers what would comprise his lungs. To this day, we avoid certain households due to asthma issues to mold or dust. Sending you much love and hugs!

  4. Thank you for your courageous post. Be kind to yourself. You are doing a great job with your son. We all make the best decisions we can in the moment and life is a process. I’m glad you have what sounds like a wonderful doctor behind you. Blessings to you.

  5. Kelly,

    Thank you for sharing. I am sorry for you pain and guilt. You are an amazing mom and it shows through your posts. I am sorry for John’s condition. I am not one to write comments, in fact this may be the first time I have done that. I am moved by your transparency and honesty and I admire you for that. I am sad at the hurt you are feeling. I look back all the time and feel guilty that I didn’t do more to help my son during our years dealing with eosinophilic esophagitis. Your post helps me remember to advocate at home and care for him in different ways. Please forgive yourself b/c you did not advocate and travel to educate others in vain. Thanks for all the work you have done. I will be praying for you all.

  6. Kelly, thank you for sharing your story. However, as much as you feel that you have failed your son you need to remember that you are not superwoman or supermom. Where was your husband while you were at school, speaking engagements, etc? You can not and should not take full responsibility for this. And, 12 years old is old enough to know that he should be taking his medication daily. My eldest daughter is 16 and we still have to check that she has taken her daily asthma medication, but I stress the “we” because I know that I can’t and shouldn’t have to do it alone. With my younger daughter’s severe food allergy we are constantly reminding her not only to carry her epi-pen, but also to advocate for herself when we are out. I am happy to say that at 13, she is finally starting to speak up. But, it took both of us, my husband and myself, constantly reminding and encouraging. She still gets angry when we do remind (her words are, “I’m not stupid you know!”), but the key here is that I am not doing it alone, and neither should you. I am sorry for my rant, but I just don’t want you to take all of the responsibility for this situation. I know that I would feel just as badly as you, but I would hope that a friend or family member would remind me that it is not all mine to bear so I hope that you will see that, too. Thank you for all you do for kids with food allergies. Take some time to work on the home front, and know that you are doing the best you can.

  7. I am guilty of not treating my son’s asthma aggressively enough. It’s so hard filling him full of meds when he seems fine. However, he is 6 and has two exacerbations this year that probably could have been avoided if I had not tried to take him off his daily meds (per allergy docs recommendation however). I’ve been toying with the idea of getting a new asthma dr for my son, and this really makes me feel like that’s what I should do. I think I need to be more proactive in dealing with it. Mommy guilt is a hard one to overcome, but please remember that you have helped many people!

  8. With tears I read your story. I am so sorry to hear of more bad news. Us moms always put the blame on ourselves for our childrens sicknesses. My son has asthma and severe food allergies as well. I know too well the helplessness feeling when my son is using a nebulizer my thoughts go to what could I have done. But in reality I know its nothing but ill always feel I should be able to protect. Good luck to you, your family and all of the others out there. Be strong.

  9. Hi Kelly, I’m really sorry to hear about your son’s asthma. With our food allergic children, management of asthma is so important. One of the reasons why I was and still am, supportive of the Kids With Food Allergies Foundation merger with the Asthma and Allergy Foundation of America is because of this need to better inform families who are raising children with food allergies about how to manage asthma better. We’ve already begun cross programming through webinars on asthma and food allergies. I hope you will feel free to reach out to me if I can help in some way. I think you and I had a similar convo when your baby was diagnosed with FPIES. Asthma can largely be controlled with faithful use of maintenance meds. My own son’s a moderate persistent asthmatic, so I’m familiar with this – it touches close to home for me too. Warmly, Lynda

  10. This is heartbreaking! I have heard really wonderful things about Allergy Associates in Onalaska/La Crosse, Wisconsin. A friend of mine has received life-changing treatment for her asthma. We will also be taking our son there for his nut allergy. It’s worth a shot!!

  11. Kelly, thank you for sharing your story. I know that what you are dealing with is hard, but remember this — you are a fabulous Mom!! None of us can do it all. You couldn’t have known what the doctor would say. You will take the bull buy the horns and solve the problem in the best way you can. Hugs.

  12. Kelly, the fear and guilt we have as moms can be overwhelming. I hate that our kids have to live knowing that a simple bite of the wrong food or weakened lung capacity can bring fatal results. We were at the allergist last week and had a similar discussion about Sophia’s asthma. We were only doing the preventative inhaler during the winter months when she was having the most symptoms. She has been doing intensive dance this summer, swimming, boogie boarding and I haven’t heard one wheeze or cough. Turns out her lung capacity is extremely low. I was totally shocked and felt extremely scared and guilty. We were also told that if it wasn’t treated properly she would suffer from COPD. I was told her body has learned to compensate for the asthma and that is why she has been able to do many activities without outward symptoms. I pray all the time that she will survive each day. Thank you for sharing your story.

  13. We gets asthma checks every year and use inhalers occasionally, with daily singulair (generic). My brother had asthma and is doing okay at 45 today. Keep searching for the right physician for your child.

  14. Kelly, I feel your despair and guilt for what you think you didn’t do for your son. First of all, thank you for sharing this part of your life with us. Second of all, there is no doubt you have been the best mom you can be. I know life can pull us in many directions and before we know it we are in a juggling act feeling like we have to keep all balls in the air. I have similar guilt knowing when I focus on one of the many problems or obligations I have, I can’t give the others (my children) the attention they need. I wish I knew how to not juggle so many balls, how to do more for my kids right now. I haven’t figured it out yet, so I continue with the guilt and frustration. I pray you will not feel so overwhelmed and will find the right way to juggle all that you have. It doesn’t mean you love your son any less but it does hurt your heart. Lastly, don’t be afraid or fell badly about accepting help. Even if it would just free up a little time for you to have time to yourself or do something special with your kids. I hope for good support around you and a soft place for you to land when things are too hard to take.

  15. I’m so sorry to hear about the severity of John’s asthma, and for the loss of your parents to lung disease (and your own struggle with respiratory issues). Don’t let guilt weigh you down; you’ve gained some perspective about readjusting things, but you haven’t failed as a mother. You have given your heart and soul into caring for your kids and family. Would you change some choices if you could go back? Sure, we all would; nobody’s perfect. It’s always easier to regret what could have been because hindsight is 20/20 (though not always).

    I am thankful that this doctor was candid enough to really address the severity of John’s condition. I’m thankful that while she knew she was talking to you and you were listening, that she addressed John directly to have it sink into his own understanding how imperative it is that he advocates for his own health. I’m thankful because she really is looking to work as a TEAM with you both – what a blessing. She knew that a key role is for John to get on board, with the same seriousness as she has for his health.

    Another sobering reality is that even if you were around to micromanage the medications this summer, John’s asthma might still be where it is. (Hopefully it won’t with proper and aggressive treatment!) Even if you begged your mom to quit smoking, she still had the ability to make her own choices and she may or may not have listened to all your pleading. I hope that doesn’t sound harsh or uncaring at all — it’s so hard to think about what might have been if we acted differently. But I just want to remind you that while you can do your part, remember that your part is just that: a part. You do not and cannot bear the full weight of responsibility of someone else’s life. It doesn’t really lie in their own hands, either. They have their part as well, but it also just a part. God entrusted these children to your care, while knowing that He is ultimately and sovereignly watching over them at the same time. He has called you into a partnership with Him as well; He will guide (and has guided) you in how to care for each of them. And that’s also why I’m thankful that you have this doctor who is part of this “team partnership” so you can all work together!

    I imagine the greatest regret would be to not have known all these years and find out down the line when John has COPD. But I’m thankful that these things have come to light now, and can be addressed now. I pray that God would heal John and give strength to his lungs, that any progression in asthma severity would not only cease, but be reversed and that John would be able to fully enjoy an active life to the glory of His Creator. You are doing great. Hugs and blessings!

  16. We do not have asthma, but this is a timely post for me as I look for work — hopefully once again remote/from home, since I do all of the allergy-free cooking around here — & I WANT to be here! I also hope to find Rewarding & Worthwhile work, like yours. It can be really hard to balance everyone’s needs/wants, (more work/$ = more Opportunities for our loved ones, right?) Please don’t beat yourself up. No one can do it ALL. My new motto {so I take better care of myself too}: tomorrow is another day. We can only do so much in 24 hrs. God bless John, you, your family, & all others who Suffer from asthma, food allergies, lung disease, EoE… … …

  17. As Mom’s we want nothing more than a happy and healthy family. It pains us when someone in the family unit is hurting. There is nothing more I would like to do than to take on my daughter’s disease so that she no longer has to suffer. I would do this in a heartbeat; no questions asked. The frustration and guilt that I feel as a Mom cannot be easily put into words. There are days that are successes and others which are failures, but I move forward believing that it will all be OK because the alternative is too painful to imagine.
    Take comfort in knowing you are doing all you can do and more because your are also reaching out and bringing awareness to many. You are doing a great job!

  18. Reading your words, I can hear my parents word ringing in my ears back when I was a teenager about taking my medications and carrying my epi pen. I can empathize with your son – asthma and allergies suck when you’re that age. At a time when you want to fit in, all you feel is that you stick out. But through it all, my parents were there for me, hospital/ER runs, rubbing my back late at night, staying up with me during neutralizer treatments, and juggling work schedules to take care of me.

    At some point in there I realized, that taking my meds helped me live my life. The sports I was good at, became ones that I excelled at. Taking my medication helped me have more fun – I was able to begin to have what other kids had. Because I started to feel good, I knew I could feel good, I wanted to feel better and became involved in the management and treatment of my asthma/allergies. It took some time, but with their help, I learned my responsibility to my health.

    Fast forward 20 some-odd years later, I’m still seeing my asthma/allergy doctors and a dermatologist regularly, working with them to refine my medications. With a new to me med along with intelligent diet and lifestyle choices, today marks a month of being off a medication (that’s hardly used to treat asthma anymore, and I just couldn’t get off of) I was on for 30 years. There are still days that tough, but on those days I remember all that my parents did for me and all the times they had similar experiences to yours. I am humbled by their love and support and by any parent, caring as you do, for their child in a similar situation. Peace.

  19. Kelly,

    I was so moved by your post this morning that I had to comment. Unfortunately the comment went elsewhere, and because I really felt your post, I am reporting my comment. This had been on my mind all day.

    I don’t know you, outside of the “you” that I’ve come to know over the years of reading your blogs and buying your books but just that small window is enough to realize that your kids have been incredibly blessed with you as their mom. You’ve also inspired so many other moms and caregivers and given so much insight and guidance by sharing your own experiences and recipes–I can’t imagine how many other lives you’ve impacted in a very big, very positive way. Thank you, on behalf of all of us who fall into that category.

    After reading your post, I just want to send you a big hug and remind you that none of the medical challenges your family has faced in the past and is currently facing now are your fault. Some things just happen, regardless of what we do. Sounds like you have a knowledgeable, capable doctor who is pulling together a good plan for your son. My prayers go out to your son and to you as you process this new information and move forward to new ways of managing it.

    One mom to another, please don’t be so hard on yourself. You are doing a great job–keep doing what you do.

    God’s peace,
    Julie

  20. Kelly, I will pray for John and your family; I cannot even imagine how you felt at this appointment. You have dedicated so much time advocating for us all. I want you to know that you have made a difference for our family with your cook books. My daughter who is nearly twelve exclusively uses your cookbooks to prepare safe treats for herself and non allergy friends. However, if you never published another cookbook or ever posted another update to your blog, I would totally understand! I appreciate that your doctor spoke to him, because he is of an age that he must take responsibility for his own health as he is “old” enough to do so. However, he is also at the age where he is risk taking and feeling as though he is invincible. He needs you, his dad, and siblings more than ever though. Be strong and diligent; we do not need you anymore (we may want you though!). You have shown us the way. Take care of John.

  21. Thanks for sharing this open honest account of your son’s experiences. It is important to hear these stories so we are all reminded of the severity of asthma and allergies.sorry you are dealing with this and I hope your son gets the support he needs.

  22. Thank you so much for sharing this. I hate giving my son his daily inhaler (flovent) because I fear the side effects. I have been vigilant over the past four months because he was nearly hospitalized this spring with pneumonia. You have helped me realize how important it is to keep it up. My son has multiple food allergies as well, and those battles seem to pop to the front.
    My heart is with you and your son. xo

  23. Kelly , don’t give up God is in control no matter what the doctors say ! I will be praying for him for healing I will be praying for both of you for strength and for quick healing of your son

  24. Hi Kelly – Both my kids have asthma but my older one is doing great as we make her do breathing exercises. Please search for “Pranayam yoga ” in YouTube and make your son do these for 30 mins first thing in the morning with empty stomach. These are the exercises to improve lung capacity. I hope this helps. I know how hard it is for you. But don’t blame yourself. You are doing more than most parents would. But please make him do these exercises. You should see results within a few weeks.

  25. Beautifully written, Kelly and a great reminder for us to be on the ball with the invisible asthma symptoms. I think we all have those dreadful moments of guilt, some lasting longer than others, but keep at the forefront all the wonderful things you have done. Easier said than done, but I hope all these comments help!

  26. Kelly,
    My heart truly goes out to your son — and to you. Thank you for sharing something so deep and personal. Over the years, your willingness to be honest and open about the realities of raising children with health issues has been one of my anchors and inspirations.
    Sending hope and support…

  27. Kelly,
    I absolutely agree with all of the replies to your post. My heart aches for you, your son, me, my daughter, and all parents and their kids struggling to manage food allergies and asthma. Our 13 year old daughter has 7 major life threatening food allergies, can’t eat any fresh fruit or vegetables (cross-reactive) and has uncontrolled asthma that we can’t treat with any of the preventative meds because she has had such severe psychological side-effects from them. At the worst she began thinking about suicide at 9 years old. We have yet to try any of the cortocosteroids again for fear of those side effects. I too have all of your same feelings of not doing enough, being enough, having enough, etc… and it is all a lie. We have to cling to the truth and that is we have been gifted these children and we are doing our best in every moment to make right decisions and care for them in the best way we can. Please know how much your post, your work and your impact on all of us means. I am grateful for your perspective and encouragement on our shared walk. May John’s health and quality of life be strengthened and built up and may you and your family be blessed Kelly.

  28. I am so sorry you are going through this, but your post was also a reminder to me. My lung were damaged from chemicals at a job a couple years ago and I am supposed to be on three different types of meds. I am VERY scatterbrained and forget them 90% of the time until my asthma flairs up and then It affects me for weeks until I get it back under control. I have three kids and want to see them grow up so this is also a kick in the face to me as well.

  29. What I love about you besides providing my family great recipes, is how honest you are. You are definitely a super mom, but also human like the rest of us. I love that you share your highs and lows with us. You all sometimes need come to Jesus. When my son was diagnosed a nurse put everything in perspective for me, she said he is too cute to gamble with his life. I was angry at first but grateful.

  30. I have tears in my eyes reading this post! I have never written a comment on your blog before (though I read it and use your cookbooks several times a week), but hearing about John’s lungs brought me here. I loved your honesty in this writing and how you will work to help him. He is a lucky boy! And you are an amazing mom and food allergy advocate. I know you both will get through this. We allergy moms have something in us that MAKES us get through the toughest reports from our doctors and follow up to ensure our children’s safety. Keep us posted on both of you, Kelly. You both are stronger than you know!!

  31. I’m very sorry to hear about your son’s condition. Although, I admire you for being his support system. Hoping that you will find a solution to this. Thank you for opening your heart to your readers.

  32. Kelly, as you have so appropriately titled this post, start today – start at square one and don’t look back in guilt. “Nunc coepi” – now I begin!
    Thank goodness for doctors like yours who see the big picture and cut through the clutter and talk plainly. It is a gift that not all possess.

    I will share that during my youngest’s recent ER visit for asthma, I declared, “I HATE asthma! I hate it MORE than food allergies!” So I know some of your frustration.

    I also see it / read it as a blessing that this doctor wisely addressed your son. It will likely have a more unifying effect on the medicine management in your household – now you are both truly on the same team, with him learning to take the helm.

  33. Btw, Kelly – just FYI, I linked to this post for the Asthma forum folks over at Kids With Food Allergies [dot] org. Hope that’s okay with you – I thought you had a pretty powerful message to share.

  34. Thank you for sharing your story. It’s heartbreaking to hear about your son’s asthma condition. My also has severe food allergies, environmental, drug allergies and asthma. I often find myself spending more time educating teachers on food allergies than asthma.

  35. EVERY SINGLE COMMENT, I’ve read, and read again. And again. Because your support, love and and kindness is overwhelming to me. It’s beautiful and has helped me more than you know. At a moment I was feeling very vulnerable. You made it all so much more palatable. Update – John’s levels were checked in past week. Improvement with higher dosage and steady usage. But not out of woods by any means. We continue with the treatment plan and will go back again in a few weeks. But we are both so encouraged by the upswing. I’ve joined him btw, as my own asthma and allergies have been getting out of control. And he lectured ME on taking responsibility for my lung function and health. He was SOOO right. Thank you you guys. LOVE YOU SO MUCH – your support truly means the world to me. XOXO

  36. I had the pleasure of knowing your sister in KY as our kids went to the same school until we moved last year.

    How encouraging to see results already! Managing asthma seems so much trickier to me than food allergies.

    I certainly don’t view your actions as failure. The reason for regular check-ups to is monitor the condition. When you discovered that his asthma wasn’t under control, you responded. Mommy guilt is the gift that keeps on giving. Thank you for sharing your journey in such a raw honest way. It’s an inspiration to many families.

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