We did it! Well, actually, Posie did it!! We are coming home! Yay! Last weekend I shared a little bit with some friends & family on my Facebook page that this place didn’t end up being anything like I thought it would be . . . it was so much more! I truly couldn’t have imagined something this good all by myself, this was God, and I’m so grateful!

Things are going to be moving pretty quickly today. It’s only 5 am, but I decided I wanted to get up an hour early this morning so I could take a shower to really wake myself up for the day! We have a morning feeding therapy session and her dad is going to arrive around that time so he can take her outside to play afterwards (while I pack our stuff up) and then we’re going to get out of here. We have a long trip back home and really this will be the longest weekend ever for me because I have to wait until tomorrow to see my oldest when she gets home from camp and then we have a lot of talking and praying about stuff. I’m just so glad that I’m going to get to hug her neck though. I’m posting pics from today and our past month on here today! : )

Posie has done so great here! I just can’t get over it all! When we came there were some foods she had eaten bites of in the past or some that she would eat about every day (at school, for lunch, she would eat crackers or goldfish, pringles, apples) and she’d eat graham crackers sometimes or a Happy Meal Cheeseburger/Nuggets. That’s about it (on a regular basis, there were things her therapist was able to get her to take bites of in therapy). It’s a very difficult thing to navigate all of her stuff, the GI issues (so complex), nausea/headaches from the Neuro issues, Sensory issues (the SPD/oral aversion), and the Behavioral issue (developmental delays). When we came here she was drinking her baby bottle (6-8oz) every 3-4 hours. That was her SOLE source of nutrition and it has been since she started taking it, after weaning from the breast at around 16(?)Months old. The only exception being the feeding tube that she had 4-5 months last year, and of course, at that time her main source of nutrition was the formula via the tube, which was just a different brand. Going home she’s only taking 2, TWO, baby bottles a day!! One in the morning at waking up and one at night when going to bed! I’m including a list of everything she is eating now and whether she’ll be eating it when we go home or not.

She says things like, “OH yum, yum, yummmmiiiiiieeeeee“, at meal times and makes other sounds as well. She is excited about eating food. Oh my word. It is too much. 🍔🍎🥛

She has had a few issues with textures on a few foods but she’s puked no more than 10x this past month, no more than half a dozen were w/feeding and only coughed/sneezed a few times. Oral dysphagia isn’t a main concern of mine anymore, though I do have concerns with choking but not as I did. The sensory issues related to feeding will still be managed by her therapist back home. We’ll continue to stay on top of her GI issues b/c if she gets to puking bad that’s going to tell her brain, “No, food hurts, eating hurts” again.

I’m so thankful that God blessed us with such an incredible opportunity. We’ve had a great community of believers praying for her for a very long time. It’s hard when you want something so bad, pray for it for so long, have faith that your Father hears you but also know that just because you ask that doesn’t mean He’s going to give you specifically what you’re asking for. It’s especially hard when it doesn’t happen on your timeline, but His is always perfect and He’s never late. Sometimes I have gone through seasons where I haven’t felt heard and it’s so easy to think that my prayers won’t be answered b/c it didn’t happen ALL AT ONCE. Geeze, we sure are about that instant gratification, aren’t we? And just because we ask for healing that doesn’t mean it’s going to happen over night. But I’ve seen so much healing in my daughter over the last couple of years. I’ve made comments about that to people and received blank stares and questions like, “Why do you say she’s been healed when she’s still sick or medically diagnosed with stuff?” Well because I can see it. I’ve witnessed it. And friends, God is a good, good Father!

I know He loves this little girl of mine and I’ve never doubted that but this past month, through every long night and hard day, I’ve received nothing but reaffirmation of His love for her in all the things that He’s done. I had a peace that I just can’t describe, God’s peace, through the entire ordeal we went through when insurance fought and denied over and over again, even on our last appeal, #butgod)! He’s provided for everything (everything) down to the tiniest detail. Coming here & going home our fuel costs have been covered, as well with my meal expenses for the entire stay! We received cards in the mail & a few packages in the mail, that came on just the right days, at just the right time (those “awful” days when I’d already poured out what I’d been given and didn’t think I could power through with a very sad/upset girl, and her spirits were lifted w/a card or package). The sweet care package that some friends in our faith family gave me the last night of AWANAS to take with us, that actually fed me for the first week when things were insane, and that kept Posie entertained with her coloring & puzzles. Giftcards from a Sunday School Class here nearby (family from a friend back home) that provided for everything we’ll need going home, her special plate, weight/food scale, timer, cups, blender, books & other things her therapists & psychologist recommended, etc.

The priceless stuff . . . the days that I wasn’t doing okay. Even if Posie was, I wasn’t. I wanted to come home, and I was scared and putting on the brave face b/c it was hard and I felt under attack and was falling under the weight of it all. The thoughts and fear that I had, maybe all along but had been suppressing, but they were real and present, they just came crashing down on me and I felt like I would fall apart and that maybe I couldn’t do this. I felt I’d maybe made a mistake (things got really hard here for a while) and I worried that any progress we’d made wouldn’t last (here or at home) and I missed my daughter (my oldest) so bad and was missing so much, I thought I’d just missed the mark on this one. But God. My friend, Scharlee, showed up, and my heart was lifted up and I could barely let her go when she hugged me.

The friend that stopped by to visit and just be here b/c she was nearby when her dad was at home on hospice, because she’s truly one of the most humble people I’ve ever met in my life. The friend that stopped by, twice, and even brought her little girl to play, brought a gift for Posie and sweet treats for this mama! The joy it brought to my heart to see an old friend that I hadn’t seen in a 10 years, I can’t even express. It was so incredible to think that after all that time we could just pick back up where we’d left off and nothing had changed (except everything in between) and she was the same girl I’ve always loved, fun and sweet, and totally cool to talk to.

The day that hit me the hardest, when I felt like I really couldn’t deal with it anymore, it was the day that I called my husband as my daughter was in Speech Therapy and I told him (half -jokingly), “I need you to just come to get me, I can’t do this. I can’t deal with this, you don’t’ know how she’s acting, she screamed for 45 minutes earlier, I can’t do this anymore”. Later the psychologist and her other therapist and nurses would tell me she was just “losing all control over everything in her life” and didn’t know how to regulate and process it all. But I couldn’t deal with it, I had the worst week with her. Every time I turned around or went pee or wanted to do anything, she was throwing down to have a meltdown. This was the ugly side of being here, the side that Facebook didn’t get to see. God is so amazing. On that day where I’d been hit the hardest, I was sitting on the sofa talking to my husband and got a knock at the door, and I let it go thinking surely they could open it because people always do. By the 2nd knock I thought, really? And I got up to open it and . . . if you didn’t know it, let me tell you, God always knows exactly what we need, even before we do! As soon as I opened that door I saw my favorite person, LaShanna, on the other side of that door! All the way from Georgia! My heart nearly burst out of my chest! Her whole family was with her and I got hugs & kisses from every single one of them and I was so surrounded by love and I got some time with them before Posie got out of therapy and they stayed here with me till her lunchtime, when Frank stood in the hall by the entry doors to the hospital giving me words of encouragement before they left.

LaShanna didn’t know what was going on, she had no idea what I’d been going through, in fact, she tried texting earlier but I was so distracted and busy w/Posie that I just didn’t bother messaging her back. I was so depleted. God knew what I was going through. After their visit I felt so much better, I had a little pep in my step and was giggling much more than usual. I went back to Posie’s afternoon therapies with her much more relaxed and intentional than I had been and was able to set my focus back to where it was needing to be while I was here. Our Lord knew that what I needed was to be with my people, to be with “my family”, my community of fellow believers, to be embraced and loved on and He knew the words that I would need to hear too. I thought this past week I could for sure “make it” till we came home and then her CLS and OT wanted to make sure I got a couple of hours of R&R before going home, as well as a hot meal, and arranged for that to happen. I didn’t think it was necessary but once I sat down with a hot meal, pulled a blanket over myself while I finished up working for the day, and was able to spend that quiet time with the Lord, I realized how loud everything else really had been. I need to be alone with Him, I needed to rest my body, mind, and thoughts. I needed to be with Him & be reminded that He’s my only safe place, b/c if we’re just being honest here it’s been way too easy to “get my mind off of things” here by talking to some of the other moms who like to stop by and make small talk, or try to stay busy with work, or watch a video and I need to remind myself that just b/c you read His word 1st thing in the morning doesn’t mean you don’t go back, over and over and over, through the day to see what He says. Let His word fill your heart with grace.

“Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God.” Colossians 3:16

Another praise here has been seeing how faithful God is to bring to mind people for us to pray for when we just ask Him to give us that. We’ve met a lot of new little friends here to pray for, for that I’m thankful, but sometimes I’ve felt like, “Wow we’ve got it so easy”, seeing so many of the kids here. I know that there will always, ALWAYS, be someone in the world that has it worse than we do. That’s true for everyone, but it’s hard to not discount yourself. (another attack of the enemy) One of my friends once said that everyone’s healing journey looks different and that the enemy will try to beat you up with comparison and we shouldn’t let him because God has a purpose for why we journey the way we do, so let Him work it out! I like that.

I’m so excited to get home and just see how different life is going to be from now on. I know that it’s still going to be a lot of hard work but I’m ready for it, I’m so excited and so hopeful! I feel equipped & empowered going home. I know that I’m going to be able to help her to be successful and it’s been a really emotional week because as I think about going home I keep thinking, “I think I might enjoy parenthood again”. I know that probably sounds like a really harsh statement. How could I not enjoy parenthood? Well I haven’t enjoyed much of it for 5 years now. I’m not going to try to sugar coat anything with you. Most of it has been so incredibly hard and yes, that’s what motherhood is, hard. But cleaning puke nearly every day, watching her suffer, hearing her cry, struggling over the food and meds, no sleep for anyone in the house, frustrated to the point that I wish we my husband and I lived in different houses and we could alternate weekends with the kids . . . all the things that people never see. I know how that sounds because it breaks my heart so say it, but that’s just my heart and what I feel and how it’s been. That’s real life.

After breakfast today she’ll be sent home with her lunch which we’ll stop somewhere along the way for her to eat. She’s going to still continue to have four structured meals a day. I am to give her what’s on her “menu” provided by the SLP, psychologist & dietician, and her OT will be the one introducing new foods still. When she goes back to school she’ll have breakfast at home as a structured meal but get to take her preferred foods for lunch, then immediately after school have her 2nd structured meal and her 3rd will be dinner. Basically, she’s still got the issues with her social skills/delays and on top of not speaking/communicating much with others, she definitely doesn’t eat well when a lot of others are around, so I’m going to try to make it a point for us to do that some this summer. Prayerfully she’ll open us some when school gets here.

Yesterday I got to talk with her OT some more, we got this special book that they had been working on called “Posie’s Adventurous Eating Book”, and I got a stack of papers with lists of exercises and games to go home and play with her. The nurse came in yesterday and said, “There’s a possibility of discharge tomorrow so we’re going to go over your summary with you”, and my heart about fell out of my chest. Haha! No way, we’re out of here! Bless her! I’m letting my husband get us out of Dallas because no, I don’t want to drive in Dallas. But then I’m driving the rest of the way home! I’m so ready to get behind the wheel.

I know we’ve got a lot of family and friends who’ve been praying for us and I want you to know that I’m so grateful. If you’ve been praying for us, just thank you! Thank you so much!

So here are the foods Posie will eat (Thumbs Up) or has tried and doesn’t like (Thumbs Down):

“Thumbs up”

Green grapes, Taco Meat (ground up), White Rice (w/butter), Blueberry Muffin (just the bread part, not blueberry), Graham Cracker, Baked Potato (w/butter, salt, and a litte sour scream), Orange Slices (Peeled and Broken into Small Pieces), Canteloupe, Peaches, Scrambled Eggs, Chicken Noodle Soup (Blended), Black Bean Dip (blended), Turkey Sausage Patty, Grilled Cheese, Apple Slice, Vanilla Pediasure w/Fiber, Chicken Nugget, Chicken Tender, Tator Tot, Strawberry, Spaghetti w/Marinara, Grapes, Vanilla Ice Cream, Cupcake w/Icing, Cinnamon Toast Crunch, fruit snacks, string cheese, Fruit Loops, Lucky Charms, Bacon, Cheetoh, Vanilla Wafter, Sugar Cookie, Tortilla Chip, Mashed Potatoes, Pineapple, Banana, Pound Cake, Deli Turkey, French Fry, Pringle, Pancake w/Syrup, Goldfish, Pretzel Stick, Vanilla Yogurt, Deli Ham, Cheeseburger, Boiled Egg (w/salt and pepper), Cheese Pizza, Saltine Crackers w/Peanut Butter, Lemonade, Water, Chocolate Pediasure.

Thumbs Down:

Cheese Quesadilla, Fajita Meat (Chicken), PB & J, Strawberry Nutri-Grain Bar, Scrambled Eggs w/Cheese, Pears, Peanut Butter w/Banana Smoothie, Chicken Noodle Soup (not blended), Spaghetti w/Butter, Mac & Cheese, Celery Stick (w/Ranch), Carrot (w/Ranch), Avocado, Tomato Soup, BBQ Chips (too spicy), Green Beans), Breakfast Sausage (too spicy), Whipped Cream, Corn, Vanilla Milkshake, Mashed Sweet Potatoe (w/butter, brown sugar, and cinnamon).

If I’m not too exhausted tonight or this weekend I’ll check back in and let everyone know how we’re adjusting!

“For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

Isaiah 55:8-9