1.You routinely say sentences like "stop using Bella's syringes as a water gun" (For what it's worth the 60cc syringes work much better than any walmart squirt gun), and words like "over-stimulated", "IEP's", "hypomyelination", and "trunk control" are used in normal conversations. What? Not everybody uses those words in everyday conversations? Hmm..interesting.
2. Your sleep gets interrupted routinely by this: beep...beep...beep...beep. (Feeding pumps love nothing better than beeping at 2am).
3. Packing for vacation means taking 36 cans of pediasure, 20 bags of tubing, extra extension sets, 15 syringes, a binder of medical info, 6 medications, thickener, phone numbers of the nearest childrens hospital, emergency seizure medications, a spare g tube kit (which you pray like crazy you won't have to use), wine and meds for the momma, and that's only your "cannot forget under any circumstance" list.
4. You currently have email addresses and cell numbers of your pediatrician and two specialists (with instructions to call if you need them), the really good lab tech gives you her card and tells you to ask for her next time, and employees at the hospital recognize you in the hall when you are there for appointments.
5. You have no idea what 8 hours of uninterrupted sleep feels like, you can't remember the last date you had with your spouse, and you barely recognize the face looking back at you in the mirror.
6. Some weeks you have more conversations with your child's therapists than you do your own husband.
7. You would drive 2 hours in icy conditions in a blinding snowstorm to buy melatonin to help your child sleep. (Oh, yes, I so would).
8. Some of your closest friends are people you haven't ever met in real life...yet.
9. You shudder when people cough next to you and your child at the grocery store, and try not to grimace when someone shakes your hand. You wonder how weird people would think you were if you just carried a box of Clorox wipes with you. Germs=hospital admission.
10. You never realized how hard this journey would be...but you also never realized how much love you had to give, or how much richer your life would be by this experience.
4 comments:
If you carried those wipes you'd just look like Monk!
Bless your heart, that's quite a list.
Love love love it!!!!!!!!
You are without a doubt my favorite blogger and I am sssooo glad you are my friend!
Love your posts Julie. You share in this blog very very well. Your message - loving, sincere, authentic, real, warm, ....therapeutic :-)
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