The season of change

“But what I really mean to say is that I hope you aren’t held back because of a number. And that you don’t rush into things because it feels like time is slipping by. I hope you do what’s right for you. Hold on. Slow down. And breathe in. Your age is your age. But more importantly, your life is your life. Don’t change your journey so that it matches someone elses. We need to walk different paths so the whole world can be explored. revel in the differences. And enjoy where you are.”

Lately I’ve found myself lost in what seems to be the season of change. I’ve never been one to adapt to change well, I hate the unknown. I’m a planner, if I know what’s ahead I can properly prepare myself for it. I struggle with putting my faith in Gods plan and going with the flow. Many days I feel like the walls are closing in on me and I have to figure out every aspect of my life and the girls and our future right this second. I have to remind myself to breath, trust in the plan, and take it day by day. I know I’ve spoke on the personal change this journey has had on me in the past, but I don’t know if I, myself, have fully comprehended the evolution Of my mind, body, and soul. I find myself questioning everything around me, yet practicing silence. I feel lost at where we are in life. So much has happened over the last year and a half I don’t know if my mind and body have fully worked through it all. I find myself going through the motions, yet not fully feeling the emotions. And now that the girls are in school this is extra hard. The changes, Mia in full time school, Haven in preschool, personal changes. I have struggled to catch my footing, to feel deep inside that what I was doing was right for me and my kiddos. That what I was doing was right by God and myself and the personal growth I’ve worked so hard to obtain. With Mia now in kindergarten our time together is limited, I feel like I’ve been missing out on her and our bond was suffering because of that. Mia gets the short end of the stick so much in our house, not intentionally but with Haven and her needs and personality sometimes it is enevitable and that stinks. I carry an extreme amount of mom guilt because of it. I want both of my girls to feel equally loved, to know that they are both my world, and so so important. I don’t want either of them to ever feel second to anything, because they are not. They will forever be the princesses in which I continue to build my castle for. 

On top of struggling with all life’s recent changes, Havens Autism and its challenges have been more prevalent lately. It seems to always be a roller coaster, one step forward, two steps back. She had one bad day at school and now panics at the thought of going back. I picked her up one day to find her toe walking in her shoes, we’ve worked hard to get past that and it usually never happens, especially in shoes, anymore, but you can tell she’s been struggling to regulate her sensory needs. I look down in the shower lately to see her lining all her toys up. Again, a sight I haven’t seen in awhile but one of the most tell tale autism red flags. Haven had a dentist appointment this month, the first one since the really bad experience we had. As anticipated she wouldn’t let the dentist or anyone near her or her teeth, which wouldn’t be such a big deal but We’re pretty sure she has a cavity in the back and she struggles so much to eat that we really can’t have this holding her back. Instead of holding her down against her will and prying her mouth open like the last “lady” they said no big deal, we will try again next month, but with sedatives. Not ideal, but hopefully it works. I’m thankful for a new dentist who is understanding of Havens needs and the lasting impression their experience with her will have on her life.

Havens ear infection set us back quite a bit last week. We spent every other day at the doctors. The thing about Haven is her pain threshold is so high that I think her ear was pretty bad before I was aware there was a problem. She’s so used to living in chronic pain from her Chiari and migraines that an ear infection is nothing to her. Thursday we spent the morning with our ENT. We decided it was best to suction her ear out so it could get better and heal. We didn’t have time to sedate her so I held her down while the ENT did it. I hate always having to be the bad guy. Every single appointment entails us holding my sweet girl down against her will. And every single appointment we both leave crying. The good news is she is on the up and up, and after a much needed weekend away filled with rest, good food, beverages, and my three favorite ladies, so am I. We go back next week to check Havens ears, her hearing, and any damage that may have been done. 

This morning Mia said ” you know ______ can go potty on the potty, not just pretend but actually go. She’s only 2, I don’t understand why Haven can’t.” Insert. Long. Long. Sigh. This is one thing I struggle so hard with. I find myself forever struggling to have and keep friends with neurotypical kiddos. I hate the constant comparisons. Even if they aren’t intentional. I literally fight the urge to not smash my head into the table when people say things sometimes. And I know not everyone means it in a bad way, some people really just don’t get it. Havens 3. No matter how many methods we have tried, bribes we have offered, undies, pull ups, you name it, she has yet to potty on the potty. She panics at the thought of it. It scares her to even be without a diaper. If you’re one of those magician parents feel free to come use your magic on her, but until then, I’ll be changing diapers and loud sighing to myself. She also still has her paci most of the day. Her paci is her comfort blanket so to speak, it meets her oral sensory needs while keeping her calm. She may go to college with it at this point. Kudos to you and your child for loosing it at 1 or 2, good for you and your child for being fully potty trained at 18 months. But my child is not your child, and she’s mentally and physically not there yet. She may not be until she is 5 or 15, and that’s okay. Exhausting, some days discouraging, but okay. Every kid Autistic or not, moves at their own pace. While you’re over there cheering about your potty trained, paci free, perfect kiddo, I’m here praising Jesus that Haven finally ate a meal for the first time in three days or gained .4 ounces in the last 6 months so we can keep the G tube talk at bay. Small victories.

On a brighter note after three long months of waiting, going through the intake process, and haggling with insurance Haven has finally gotten a full approval for ABA at the new Children’s Autism Center opening in Angola. If you have followed my blog and our journey you may remember I have toured quite a few centers but have struggled to take the leap. I didn’t love most of the centers, and honestly ABA scares me. Leaving Haven for so many hours a week with these people scares me, ABA can be up to 40 hours a week for those that don’t know, that’s a giant obligation and a pretty intense one at that. I am very hopeful that this is a step in the right direction for Havey and our future. Please send good vibes and prayers as this will be a major adjustment for us all. 

One thing I am constantly reminded of is how lucky i am to be surrounded by the people I have in my life. God has really blessed me. I am confident he has given me the people he knew I needed to get through whatever this life throws at me. So many people constantly check in and offer a helping hand, Matt helped take some of the hours the nights Haven didn’t sleep so I could get a little rest. My small circle of girl friends always offer advice and keep me sane. My momma, gram, and sister loved me even though I wasn’t 100% this weekend. Forever and ever thanking you all and God for the grace you exhibit towards my family and myself. Keep being the good y’all.
xoxo Taylor 

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