When you become a special needs mom your life transforms into something magical, you become something special as well…. Our life’s as Ariana’s parents have been something amazing. She has already blessed us beyond measure and we can’t wait for all the precious moments we have yet to experience with her. That’s the sweet part. 

 The bitter part. She gets sick, I know all get sick…but her heart, her sweet precious heart puts her at risk for much worse. Two weeks of not being able to breath right, two ER visits, one misdiagnoses later and her doctors have finally figured out what’s wrong. I am still feeling torn and at a lost for words as to what and how I am feeling.. I don’t know how to help her, I don’t know how to make her better.

 Ariana stops breathing. She struggles with every breath and it’s the most terrifying thing in the world… Her doctors were finally able to diagnose her with stridor. Something is blocking her airway, and she has an unusually small voice box. She is taking two different types of medicine that she will be on for one month to help with the infection (reflux caused) and to hopefully clear her air way. If these medicines don’t work, surgery might be needed…. 

 Ariana also just got diagnosed with  oral thrush. She got an infection in her mouth due to the antibiotics she is on. Now she is on infection medicine to help clear the trush… 

 She also has an infection on her g-tube. The skin around her g-tube looks as if it was falling of. The doctor said it’s just because it gets wet. So the moisture “cooks” the skin. She prescribed some ointment. She’ll be better soon, but still needs a follow up with her surgeon. 

  It’s been an overwhelming week so far. Countless sleepless nights because honestly I am terrified that she’ll stop breathing. A crazy amount of ER visits, doctor appointments, and medicines, blood work, and therapies….

 It just makes you think, it makes me think if this is all our life’s will ever be. Is this all Ariana’s life will ever be? Getting sick all the time, then getting better to just get sick again? Countless therapies, appointments, medicines, and more appointments…. 

 It makes me think… Will Ariana ever live the life I had dreamt up for her, will she live the long life I expected her to live? 

I know I’ll drive myself crazy asking myself these unsolvable questions. And I promised myself and Ariana I wouldn’t along time ago, but it’s just one of those weeks, Ariana just can’t catch a break. I just want my baby to be a baby… 


One thought on “Bitter-sweet

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