All the Fuss

So this photo is seriously one of my favorites. 

I mean, what a better way to capture exactly what a trip to Disney World means with 2 kids. 😂This was taken back in January but I figured I would post it now as that Amelia face has been a frequent sight these past few days. Natalie has spent 3 weeks at a day camp from 8:45-3:30 5 days a week. She LOVED it. She was swimming, bouncing in a bounce house, playing in a sandbox the size of my living room, and riding horses everyday. What more could a 4 year old want? But of course, when you put 15 petri dishes together the snot inevitably flies and we were landed with a summer cold. At the same time as Amelia's mouth decided it was a great time to cut four canines. Yup, that's right FOUR. This kid is the epitome of go big or go home when it comes to teeth. A few months ago she decided to cut 3 molars at the same time, too. Why???? Anyway, so far this week (it's really only Tuesday??) I've been wiping the snot off Amelia and figuring out what to do with the immense energy permeating off my 4.5 year old who clearly is missing the energy expenditure of last week. I've been doing a little homeschool preschool curriculum with Natalie and we are having so much fun with it. This week we started our new unit on the 5 Senses. We learned how to explore a lemon using all 5 senses and Natalie actually loved the taste of it. Good for you, girlfriend, it's all yours 😝 One of our activities was to taste some mystery substances in a muffin tin and describe how they taste using some new vocabulary words - bitter, sour, sweet, salty. Natalie was hilarious trying all the flavors. Her favorites were sugar (big surprise there from my little sweet tooth), honey, and... wait for it... SOY SAUCE! Ha! You can tell this kid was raised on Asian food, it's one of our favorite cuisines. Here's a fun pic of her with her activity, she's got such a beautiful smile!

The last couple of weeks have also brought some great updates on Amelia! She will be attending a toddler program in the fall where all of her services will be given over a 3 day/2.5 hour school week. This includes physical therapy, occupational therapy, feeding therapy, speech/communication therapy, vision therapy, and special instruction. We had a few concerns about the transition from home therapy to school therapy and this last week we got everything ironed out. We have an amazing service coordinator who made a good case for Amelia's needs and we were able to customize everything to the best possible scenario for Amelia. And I'm beyond gracious to God for orchestrating this through everyone who helped. Also, despite her cold, she's still babbling up a storm and we are almost certain we heard her say the word "more" today when she was in her high chair. My mom and I looked at each other in shock! She might have just thrust her lips together and breathed out since she can't breathe through her nose and it just sounded like "more".... but this is one of those times that I have a  mommy celebration and do a little dance.

This month has also been teaching me a lot about what it really means to have a child with special needs. Not that I haven't been learning it for the past 21 months but with Amelia being fussier than usual it has been more apparent. Since starting the crazy laxative treatment (as discussed in my previous post) Amelia's sensory tank, as her outpatient PT clinic calls it, has been filling that much quicker. She doesn't handle sensory stimulation nearly as well as she used to. Noises that we had worked out to not bother her started upsetting her again and I stopped being able to put her in the baby carrier/sling when out and about. This probably has to do with the fact that the Miralax is making her super uncomfortable so she's already got loads of sensory stimulation happening inside her own body! When the average person doesn't feel great, they have a diminished ability to handle their outside world. Now imagine it's a tiny little person who can't see well or move her body the way she wants. Poor baby! So we've had to accommodate and try to live life as normal as possible but doing the dance of what's pushing Amelia just the right amount and what's pushing her too much. We do not want to put her in a bubble and make sure she never gets upset or cries because that's not real life. She has to grow up and learn how to handle her environment but chucking her into a crowd full of people with a mouth full of swollen gums, a snotty nose, and an upset stomach isn't going to do anyone any good! So we are figuring out how to balance it all... and boy is it exhausting! I found myself thinking the other day, "this stinking Miralax! I can't even take her to our best friend's house anymore without her flipping out. Something is wrong with this. We need to fix it." And then I realized, "Oh wait, this is having a child with special needs. I don't need to FIX this. I need to pray for strength and wisdom, and help Amelia through this. It's not about me."

Which brings me to my next point:

I've also been learning a lot about the grace and goodness of God. I tend to try to make everything about myself. I would never call myself entitled but I totally am. I look at my relationships and try to figure out how my needs can be met through these relationships - not consciously but when I really look deep I see it. Especially my marriage. Matt and I have had some ups and downs typical for a couple going through a very stressful time in life. But I've realized a lot of it stems from me not feeling like my needs are met. The start of our average "discussion" (ahem FIGHT) usually start with me saying, "I just feel like you haven't been doing enough for our relationship" or "I feel like you don't love me because you don't plan date nights", etc. I've been feeling justified in these thoughts and feelings until this week when I listened to a podcast from Revive Our Hearts and the speaker discussed unfulfilled longings and desires. It has caused me to pray a lot and repent and change the way I think and pray.  I'll post the link to the podcast on the Resources page of my blog but I'll give a summary of what I've learned. The speaker (Janet Aucoin) spoke about how we will always have unfulfilled longings on earth. We were designed to only have 100% fulfillment with God but when sin entered the world through Adam and Eve we were separated from God. God sent his son Jesus to take on the punishment for our sin, die for us, and raised Him from the dead so that we can now be reconciled to God. This is a done deal for those who believe in Jesus. But we still have to live our lives here on earth. And it will be marked with unfulfilled longings. This sounds sad and depressing but really what this does is puts our focus on what we really need - Jesus. And, if we've placed our hope in Christ we will someday be reunited with God. We already have everything we need. We don't need anything else. God has already done it. Our unfulfilled longings on this earth point to the fact that something so much better is coming next. Our longings will be 110% fulfilled someday when we are united with God in heaven. Romans 8:18 says  For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. God blesses us with more than we could ever need to serve him on earth. And he gives us glimpses here on earth of what it will be like in heaven. Anytime we experience someone serving us or seeing something beautiful we can say, "Thank you God, for that glimpse of heaven" and it frees us from a life of looking around and noticing all the things that are wrong and all the ways we aren't being treated the way we deserve. Amen to that!

I totally didn't intend to go into my spiritual walk on this blog post, I originally intended for a fun update but this is a real blog with a real human being going through some real struggles so I figured I would share what I'm learning. And really, I want to be clear about who we are relying on as a family to get us through the ups and downs of special needs parenting. Our faith in who Christ is and what He has done is the only thing getting us through. Even when we fail all over the place. I'm learning and it's hard and it sucks and I'm terrible at it more than I'm good. But Jesus is full of grace and forgives me when I fail and still teaches me more about himself and how to live on this earth.

Now the note on which to end this post:

This was taken at Disney World during the same trip as the beginning of my post. In truth, the first pic of her screaming with Goofy was actually the rarity of that trip. The girls did so well given they spent 4 crazy days at Disney World. What a beautiful smile this sweet girl has also. As always, thanks for prayers, encouragements, and keeping up with us.