I've sat down many times to write this blog post over and over again in my head. So many parts of me have been hesitant to put the words down on paper. So many emotions that continue to take over both my mental and physical well being every day and every new road we turn down with our daughters health.
I really don't like talking about illness outside our family and I struggle knowing how much information to put out here in my online world. You won't see tons of hospital pictures and a focus on Maddie's struggles a lot because we never want her to be defined by them. We believe wholeheartedly that her character and perseverance over her struggles are what make her special (along with a whole list of other things!). She also does not want me to photograph her in times like these and I have to respect that.
I'm writing this post because I want my platform to be one that helps others. If I can just tell one other mother who is out there struggling in the food aisle over a new food allergy diagnosis or sitting in the ER in tears trying to come to terms with the fact their child is struggling to breathe than my soul will be at ease. I've been there many times.
From the day she was born she has fought against something and she continues to shine and show us what a miracle she truly is. She continually shows us that no challenge is too high and that being strong is what she is made of. I, on the other hand, am the weak one. I wish every day that I could take all of her challenges away from her little body and conquer it for her. If only life were that simple.
Maddie had been struggling for about a week or so with her asthma on and off. Sometimes it's a challenge to determine what is actually happening until she slips into wheezing and needs further medical attention. She has had a great year and we have been so vigilant with her daily meds that we really thought she was going to make it through the Winter okay. During her week of struggling we were working with her school and she was getting her rescue medication (albuterol) throughout the day which is absolutely necessary to avoid a full on attack.
Then the ice storm hit Atlanta.
I picked her up from school just in time and they alerted me to her breathing problems being exacerbated. We began giving albuteral every 4 hours to determine where she was in terms of being critical. Thankfully my husband and I made it home without getting stuck on the highways. I alerted her pediatrician who is very close to our home and who has literally been our angel this past year. She was better after treatments so I let her go out in the snow for short play times. She was begging and it's so hard to tell a 6 year old they can't go see the magic happening outside their window. The next day she was noticeably worse and by that evening we began oral steroids that we have stockpiled in our fridge for emergencies. She has to have them available at all times.
We were up all night giving treatments and waiting for roads to be cleared so we could get her to the ER. By Thursday afternoon she was unable to make it 4 hours without a treatment and we knew we had to get her to the ER.
During our hospital stay yet again it was apparent that although Maddie has triggers we can try to avoid (seasonal allergies) her more troublesome issues that put her in the ER are illness (even the common cold) and a change in the weather (cold winter snowstorm). In other words, sometimes this might just happen.
Never anything a worried mother ever wants to hear but something we face.
Words cannot express how much we love Children's Healthcare of Atlanta. They are quite literally life savers and the love we experience from the ER to the actual Hospital staff is incredible. Every time we go I feel wrapped in love and finally at ease around people that truly understand what we go through. I will never forget any of it.
We are meeting with new Pulmonologists in the next month to do some testing and see what changes might need to be made to Maddie's care but today I am just trying to pick myself back up and allow her to get back to our "normal" routine. She will go back to school tomorrow and I am always reminded that is a miracle in and of itself.
This was her first breathing treatment (out of 2) in the ER. She was tired and getting herself ready for the long night ahead. She's truly my hero…
