What do we NEED?
9-26-2022
What do we need?
Can I be brutally honest? I don't know.
Ever since posting on "the socials" this all became so much more real.
Here's what I know. I'm overwhelmed. And I'm scared.
It is so hard to think and to focus. My brain is a million miles away. I still keep thinking that this isn't real.
I wish I could respond to and thank the countless check-ins, and gifts. And to those bringing us meals. Thank YOU! If you've called or texted and I haven't responded, please know I'm grateful.
We have a meal train set up for this week.
(Thank you Noelle)
But, we are going to need help as this journey goes on. Could be months. We've been told this is going to be a "long road." What does that even mean?
It was just Ezzie and I on Thursday at Randall's when the rug was pulled out from our feet, and I will NEVER be in that position again. It's imperative that Tony is with me during this. However, he's our financial provider...so, tennis enthusiasts, we're going to need grace....and I hope and pray that when he's back full time, you all will come back to him and his lessons. He WILL still be working, but, there will be appointments he'll check out for. I know he will "worry" about providing for us. But, God sees and knows. We trust.
I believe through our community we have located a wheel chair. Praise God! I am trying to do "normal" as much as possible with the other kids. But, also, "normal" for Ezrah in going to Micah's matches, the library, the grocery store, or maybe even something *FUN* like the zoo when she's able.
As I'm writing...here's 3 ideas:
1. PRAYER. We need an army. It's hard to list specifics, but, I'm sure as you read these updates, it will be fairly obvious.
2. CARDS for Ezrah. Ez knows the VERY kid version of what's going on. She knows one hour at a time. She knows she's having a surgery on Wednesday and that is about IT. Please keep that in mind if you see her. I would love to see a wall filled with cards of those praying and thinking of her. If you know Ezrah, you know she is an empath through and through. So, I really think a wall of HOPE will mean the world to her. Her middle name is JOY and as soon as we left the hospital, she became HER again. Singing. Thinking of EVERYONE else. Reading. Happy. But, at the hospital, she's very scared and has asked some very HARD questions to Dr. Bob.
3. Aurora turns 10 on Oct. 8. As you can imagine, Ezrah has a LOT of our attention. If anyone (who KNOWS Aurora) would be willing to take her for an outing that week, it would be so special for her. It doesn't have to cost anything. She loves the park, swimming, riding her bike, scooter or just going for a walk.
If you've read this far, kudos. I'm a writer at heart and hope this helps with updates and perhaps helps me to process everything. There's times it will be raw, harsh perhaps, or even quiet...
Thank you for loving us. For being our people. For being good, kind, and generous.
Oh lady, I will absolutely be praying! Can we donate through the meal train link for some special birthday fun for Aurora, too? I'll go looking for the link!
ReplyDeleteI am specifically praying for "best case" scenario for Ezrah!
Our whole family is praying for Ezrah and all of you! Unknowns with our kids’ health are so very scary and I’m sooo sorry this is happening. Everything you’re describing you’re feeling is normal as you’re facing this great challenge and I’m so glad you’re documenting this journey to help yourself process along the way.
ReplyDeleteYou may already know this but I’d encourage you to request Child Life staff be a part of all your visits. They are a team of people at the hospital who specifically are there to help support your child through all the appointments and tests with either distractions, play (age appropriate activities), tools to process what the doctors are saying, etc. Usually just one person from the team will come spend time with your child at each appt/test. They were and are an amazing help to Josiah with his hospital experiences. Child Life can help relieve so much stress for the child and make their appointments and tests and time at the hospital actually somewhat enjoyable. Also, they can take your child out to play or do an activity if you need time to talk with the doctors about things you don’t want to discuss in front of Ezrah. They can also help you explain things or through play therapy help Ezrah understand what’s going to happen. For example, Josiah was totally freaked out about IV’s because he thought huge needles stayed inside him the whole time it was in his arm. Our child life person brought in a play IV kit and helped show Josiah how they work, let him put an IV in a stuffed doll, etc and it made all the difference in the world and he was no longer afraid. Child Life will most likely also make daily visits to your room during your hospital stay to help provide activities and things for Ezrah to do to help make her comfortable and pass the time. So I can’t say enough how helpful they can be and don’t be afraid to request certain ones that Ezrah gets along with better than others. You are your child’s best advocate and remember, you’re the “customer” here so it’s ok to request what you want and need. Praying for you guys so much and sending love!
Thought of one more thing…whole heartedly agree with what you shared about never being alone again at all the appointments going forward. That is so smart because it’s helpful not only to have the support but also have two sets of ears hearing the info because it’s so much to take in.
ReplyDeleteAnother idea is to record your appointments. If you have an iPhone use your “voice memos” app and just tap the red button before you go into an appt, leave your phone in your purse or sitting next to you and it will record the whole thing and then just tap done once you leave and then you’ll have all the info you need so you can reference it or listen to it again if you need to make sure you heard something correctly. You don’t have to say anything or ask the doctor because it’s just for you and Tony so you can make sure you didn’t miss anything. You can also edit the name of each recording so you can easily find what appt you’re looking for. Just a tip because so much info is poured on you in each appointment and it can be quite overwhelming and hard to absorb in the moment. Hope this is helpful and again we are praying for you so much!
Praying for everyone. One day at a time sweet jesus .
ReplyDeleteBirthday love being sent to Aurora today!
ReplyDeleteHang in there mama! 💗
Many prayers and hugs to you and your family!!!
ReplyDelete