The first year we had the boys, I was in survival mode. Survive the day to make it to the next day. Survive one hospital stay to make it to the next. Wash, rinse, repeat. I lost out on a lot that first year. Looking back, I don't know if I *could* have done it differently. Perhaps. But getting through the first year with medically and developmentally needy kids has a high learning curve. Would I do it again? Absolutely. Would I do things differently armed now with knowledge? Heck yes!
I feel that the past year, we are starting to thrive. Life isn't a continuous uphill battle. I dont plot all the time when the next time I can get a nap or sleep for a few hours in a row. (Oxygen has helped that problem the most!)
Below are some of my thriving tips.
1. Take a shower before getting the boys up. Get breakfast out and ready for two ravenous boys.Change diapers, flush tubes, give sippy, and plop 'em down and enjoy breakfast together. Drink coffee while they eat. Thing One learning to eat on his own also greatly helped this "thrival tip".
2. After dinner, allow the boys to have some quiet play time together while cleaning up from dinner. They sit on the floor looking at each other with toys. Typically they chatter to each other and play. I clean the kitchen. Not a fun task, but after they go to bed I don't have to clean a messy kitchen. And its good for them relationally. For so long, they seemed like they didn't like each other all that much. Now they have about 30 minutes each night to play together uninterupted. I close the curtain between the kitchen and living room and leave them alone. Thing Two tonight, cried for about five minutes. I knew he was ok. He got over it and started playing. Victory.
3. A medical team that I can trust. This has been crucial. Our beloved doctor knows the boys. And she trusts me. And I trust her. We wouldnt be where we are today with out her. I am so grateful. I have made quite a few mistakes in some of our medical decisions. Burned one bridge that I should have probably kept up a little longer. Burned another and never looked back. It's been a huge learning experience. I've also learned if I my gut doesn't like a doctor on the first visit - my gut is right - and run!
4. A good pharmacist. Our pharmacist, Micheal, at CVS is excellent. He know me. He knows the boys. He will stay late to fill a prescription so we can avoid the E.R. I trust him and he will do all he can to help us. I am again, so grateful.
5. A good team of therapists who cheer us along for every "inch-stone". They celebrate each "inch-stone" with us. Like Thing One who belly scoots to get his cup now. Our therapists have done so much to work towards success and independence for the boys. We have a long way to go - but I know that we can accomplish a lot still.
6. Supportive friends and family. Who just call or text. And listen. And understand. Its vital.
7. Faith. God has gotten us through some rotten, barely surviving times. He has given us the strength to face another day. And He is good in the good and the bad. I know thriving is impossible without him.
8. Icecream after everyone goes to bed.