This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.
I found myself sorting mail last night. Oddly, there was more for Lorelei than for the rest of the family. And these were not hospital letters or appointment confirmations. They were greeting cards. As I opened them I found myself crying tears of joy along side the tears of sadness… realizing that half these cards were “get well”, “we are thinking about ya” cards while the other half were birthday cards. How incredibly bittersweet is it to get “you survived, wahoo!” cards mixed with Happy 2nd Birthday cards?
Don’t get me wrong, I am thankful and I fully understand how much of a miracle child she is. I love that she is receiving so much love! But this week will always be an emotional week for me, with or without January’s events. In the midst of the envelopes, it was simply one of those weaker moments when I found myself sobbing “it’s just not fair!!!”
It’s not fair that my kid stopped breathing multiple times last month. It is not fair she caught the flu. It’s not fair that I am constantly worrying. It’s not fair that we canceled her birthday party because of germs. It’s not fair that she has more doctor friends than two year old friends. It’s not fair that, when she turns two, she is now officially in that 2-5 year range when research says most of these kids have passed away. It’s not fair that I am weaning my child off narcotics, with narcotics, on her second birthday. It’s not fair that my almost 2 year old cannot sit up, cannot walk, cannot talk, cannot eat by mouth.
Then there’s always the other side. Oh that hopeful, faithful and positive other side. This is the side that forces me to stop looking at our setbacks as setbacks. But instead, forces me to wake up every morning and thank God for another day with Lorelei. Because she almost died in my arms in January. And she has circled the drain a couple more times after that. So the “other side” always counters back, in it’s loud and unshakably confident voice: she started breathing again and she kept on fighting. Her tiny, medically fragile body beat the same flu that has killed healthy adults this season. You worry and you are fearful because you are experiencing a form of parenting that many will never have the opportunity to experience. You can reschedule a party for whenever you want - you manage Lorelei’s calendar anyway don’t ya?! She is blessed to have friends, whether they are doctors or toddlers, who sincerely care so much about her, and her parents. She IS turning two, she made it to TWO! She survived intubation - and she just needs more time to recover and a longer time to wean. And the use of drugs has fallen to the perfect timing with two year molar teething! She is a rockstar at laying on her back, and for right now, she is quite happy and content about it. She is also much stronger than one would suspect her to be after the wicked start of the year, miraculously almost back to where she was in December!
So you will find me, at any given moment, somewhere between those two sides. The traumatized mom and the hopeful mom. We weren’t promised to have tomorrow’s birthday. It is a gift. A gift that words cannot express how grateful I am to have…
All that to explain why I have been a hot emotional mess all day today, and will be tomorrow too. Next time you see a special needs mom, try to know and respect her roller coaster. But don’t feel sorry for her… just be sure to give her a high five, a hug, or a bottle of wine. This life isn’t for the faint of heart. It’s for the gritty, faithful, determined, takes-exhaustion-to-an-all-new-level woman who wants, more than anything, to make her child/children happy despite their obstacles.
PS. For those who have sent cards and gifts of all sorts!! Thank you. Thank you so incredibly much for thinking of Lorelei and our family. It will take time but I will try to get back to all of you. And we will try to pay it forward to others who are going through their own crazy times! 
💚