I sit in the waiting room of the pediatric allergy clinic. On first glance, it seems like a typical clinic with its pastel splashed chairs and olive-green walls. Cartoons play on the flat screen TV as the door frequently opens and closes.
However, this doctor’s office is different. Children and their parents come here… hoping, praying, and wishing for the same respite that we long for… an allergy-free life. The tension is palpable.
For seven years we have kept our daughter alive.
I don’t say this jokingly. We take my daughter’s anaphylaxis dairy allergy very seriously.
Anaphylaxis = life threatening.
Anaphylaxis = life threatening. #foodallergies #anaphylaxis Click To Tweet
We’ve heard the horror stories of one misstep which takes the life of a young child. We are familiar with the cautions that if a reaction occurs, swift intervention is of the utmost importance. We are acutely aware of the fact that anaphylaxis is unpredictable; an exposure one day can give us a four-minute window of reaction time, yet the next day we may only get half a minute’s grace.
As I sit in the allergy clinic, my frustration builds. I’m biting my tongue; I’m saddened and angry that we had another failed allergy challenge. Hearing the doctor say that his colleagues across the nation wouldn’t touch our case with a 10 foot pole is bittersweet. While I’m thankful that we have someone who believes my daughter has a chance of outgrowing her allergy, I’m distressed by his words. Her chances of outgrowing the allergy are obviously slim.
Tears fill my eyes and I excuse myself to go to the bathroom. This period of waiting after the test is gut-wrenching. While we know that the test was unsuccessful, we need to remain in the office for at least 45 minutes in case there are further complications.
I enter the bathroom and close the stall door. The stall next to me is occupied. As much as I try to hold back the tears they pour down my face. The toilet next to mine flushes and I listen as the occupant washes her hands and leaves. The moment I hear the door close I begin to wail.
The feelings of grief and disappointment won’t leave me. I want so much for my daughter… but this life of vigilance and fear of the worst happening is exhausting. My soul longs for relief.
I say a quick prayer, blow my nose, and exit the stall. My eyes are puffy and red. I do what I can to look “normal” and return to the waiting room.
As I take my seat I can’t help but stare at the Anne Geddes poster hanging on the wall across from me. Its light-hearted, whimsical nature seems to mock my internal angst.
Anaphylaxis is a disease and like many other invisible diseases it is misunderstood. People don’t understand how an accidental exposure can rob my child of life. People don’t understand that this disease means we can’t do things like other families. Outings which include food tend to be stressful. An Epi-Pen is as necessary to my daughter’s wardrobe as pants or shoes.
Our journey is far from over. Outings, sleepovers, and birthday parties will still need to be closely monitored. Our efforts in educating our daughter and others about anaphylaxis will need to continue.
This may be a lifelong battle but for now I have to resolve to continue down the path of keeping our daughter as healthy as we can while giving her a childhood as close to normal as possible. Our “normal” is different from others’ yet as I contemplate this I realize that our normal is and will be okay. We’ve done this for 7 years and we will continue down this path of protecting, hoping, and praying as long as we need to.
SHARE WITH OTHERS
Oh dear girl! I’m so sorry you’re going through this. I can imagine it would be SO stressful to always be thinking about keeping your daughter alive. I pray her allergy goes away.
It has been stressful… and this was an emotional day for us. She won’t be able to challenge her milk allergy for about 1 1/2 years.
Thank you so much for your prayers.
I know your pain. Circumstances are different, diagnosis is different, challenges are different, but we are mothers and we are no different in our pain. I do the same thing you do in bathrooms every neuro appt. we have. Why, because when I go back to the exam room, we must be strong for them. They depend on us to calm their fears. My dear blogger friend. . . Jesus hears!
Thank you for sharing your thoughts on this Michelle.
Yes, Jesus hears and the Lord has a plan… I am certain of that.
Blessings to you and yours.
Aw, Jennifer my heart was breaking reading this and can’t even imagine, but do know from when I was a teacher and also from my recent meeting with Mylan, the makers of the EpiPen with BlogHer a few months ago, that allergies and anaphlyasis are more unpredictable than you may think and can be brought on at any age. Those two concepts alone are so frightening even for a mom, such as myself, who’s kids right now seemingly aren’t effected. So, that said I just wish I could reach through my computer and hug you right now. Thinking of you, my friend. xoxo.
Thank you Janine. I remember your post about anaphylaxis… yes it is scary indeed and it’s something I prayer my daughter is healed from.
I’m severely allergic to bee stings and act like a crazy person when one is by me, but I cannot imagine how hard it must be to deal with that sort of dairy allergy. Praying the right doctors cross your path soon.
Thank you for sharing your thoughts on this. Yes, I’m praying for some relief for her… and for us.
Jennifer I’m so sorry! I can only imagine how let down you all feel right now. You guys have been through so much and are so strong. Big virtual hugs coming your way.
xoxo
Thanks friend. Yeah… we’re pretty disappointed. We have to wait 1 1/2 years before we can try again too.
Thanks for the hugs.
I’m so sorry dear!! I was hoping for better news. You are an amazing, strong mom who is an advocate for her daughter. Never doubt that!! {{{HUGS}}}
Thank you so much for the kind words and virtual hugs Katie. <3
Jennifer, thank you for sharing this experience. Some people do not understand severe food allergies, but many do. You are not alone! I hope that your daughter is doing well.
Thank you so much for your kind and encouraging words Elizabeth.
I’m so sorry Jennifer. This brought tears to my eyes as well. :( I cannot imagine how terrifying this disease must be. It sounds so scary, but I can tell by our conversations how much effort you put into every thing you do. I can tell you are an excellent mother and are doing exceptionally well in protecting your daughter. I send you lots of luck and prayers that the next allergy test will show more positive results. Miracles happen all the time. <3
Thank you so much for your kind and encouraging words. We haven’t lost hope… we won’t lose hope – because there is a miracle waiting for us.
Having a life threatening allergy is so scary! I can’t even imagine!
It is scary Echo. Hopefully next time around the results will be better.
I am so sorry, but I hold on to the hope that NOTHING is impossible with Jesus!!! Keep declaring HIS truth friend. Hugs for you and peace over this situation!
Thank you my friend. We know our miracle is coming… we’ll keep on believing in it.
I totally feel your pain Jennifer and my heart and prayers go out to you. I also have to walk around with an epi-pen because I’m highly allergic to nuts. You’re right anaphylaxis is no joke and I’ve had some close calls. There are days I leave my epi at home and because of the distance to go back home I don’t bother, but I’m always fearful that might be the day something happens. :(
Thank you for your kind and encouraging words my friend. It’s interesting to hear how adults manage severe allergies – thanks for sharing.
I’m so sorry that your family is going through this. So, so scary. Definitely keeping you in my prayers!!
Thank you so much for your kind words and prayers Meg. We appreciate it.
Oh, Jennifer. I had no idea you guys were dealing with this. This must be so challenging for you all, milk is in EVERYTHING. I had a dairy allergy (although not anaphylactic) when I was a kid and I remember feeling like I couldn’t eat anything! I can’t imagine the stress of sending her to a birthday party or anywhere that there’s food involved that you can’t directly monitor. I hope and pray she outgrows this. xoxo
Thank you for your kind words Tawnya. Milk is in everything. Fortunately we found out over a year ago that she can tolerate it if it’s baked in things… so that made things a lot easier for us.
The poor kid has dealt with this her whole life. For her first few years of life she was allergic to eggs, dairy, peanuts, nuts, and wheat. Now it’s just the anaphylaxis with dairy. It’s still challenging and emotional. I pray for her healing and thank you for your prayers. <3
Hi Tawnya and Jennifer,
It is heart breaking for everyone concerned, not to mention challenging and worrying. Keep smiling !
My daughter is 14. For the first twelve years of her life she was a serious foodie – adventurous and open to new tastes at every opportunity. Where her friends (and their parents) would say “yuck” she would say “yum”.
Two years ago she was in Hong Kong and got a nasty Asiatic gastro, which triggered some latent allergies. Now she is allergic to dairy, eggs, gluten, fructose, garlic and onions and corn amongst other things….. not life threatening, but more than a mouthful puts her in bed and in agony for a week.
To suggest her (and our family’s) daily menu has changed is a major understatement.
However, it has opened some doors and to her credit my wonderful daughter has embraced the challenge with gutso ( pun intended ). For example, she now researches and cooks many dishes for herself and us. We have discovered that several Japanese restaurants are able to cater for her needs.
We also discovered a chocolate shop here in Melbourne that specializes in dairy/egg/gluten/fructose issues, so this Easter just gone was exceptionally enjoyable for her !
Be brave. It is a challenge. However, I suspect that Tawnya might agree that your daughter Jennifer will prove to be stronger than you realize, just like mine has.
Thanks,
Matthew.
Thank you for sharing your daughter’s story Matthew. I hope my daughter grows out of her allergies but yes, children can surprise us in their resilience and the ways in which they adapt to their circumstances.
I can’t imagine the stress and worry, but you, my dear, are doing a great job at being such a proactive mother! And so brave for sharing your story. There are so many mothers in your position, and I’m sure your words are comforting. I pray that she can grow out of it. I’ll be saying extra prayers for your sweet girl from here on out! ;) Lots of love to you, friend!
Thank you for your kind and encouraging words (and for your prayers). We truly appreciate it.
xoxo
Oh I am so very sorry your family and your daughter are going through this. Hugs and prayers for you to have the for strength to continue this journey!
Thank you for your kind words and prayers Jen. We appreciate it!
Jennifer I am so sorry your family has to go through this. I’m praying for your family and hope that you’ll find some form of solace in your doctor’s words.
Thank you for your kind words and prayers. We appreciate it so very much.
Oh, Jennifer, I want to cry with you. I am so sorry you’ve had to live with this stressful and dangerous condition. Accept my virtual hugs. I understand precisely the position find yourself. My son (now 18) was diagnosed with Type 1 Diabetes at 10 and my younger son (now 15) was diagnosed with autism. Being a parent is a blessing but certainly not for the faint of heart. We love them so much, want the best things in life for them, and do everything we can to shelter them from pain and harm. You are a great mom (I can tell from your adorable little ones and the photos you share :)! Enjoy your girls and their growing up — because they will grow up so quickly despite any physical challenges — and you will have sweet memories of them. XOXO — Tammi
Thank you so much for your kind and encouraging words Tammi. I appreciate you sharing your personal experience as well.
Blessings to you and yours.
xoxo
Oh no! I’ve been in and out and couldn’t get here sooner but I’ve been thinking about you all because I remember you said her test would be the end of March. Did they even let her try like last time? I’m puzzled by why they won’t touch the case. These things are sometimes outgrown.
Wishing for that for you.
I pray that she outgrows this Tamara! I couldn’t imagine what that would be like… yet I can.
Thank you for your kind and encouraging words.
Yeah….you needed that cry. I don’t like that 10 foot pole comment, I find it to be grossly insensitive and discouraging. But throughout it all- can I just say how amazing it is that you’ve done everything in your power to make life comfortable and expansive for your daughter? And you’ll do it forever if you have to…that’s a beautiful thing.
I didn’t like the 10 foot pole comment either… it was disheartening.
Thank you for your kind and encouraging words my friend.