“My entire life can be described in one sentence: it didn’t go as planned, and that’s okay.” -Rachel Wolchin
Welp, if you follow me on Instagram you know this week didn’t end up like we planned. On Day 2 of Intensive Therapy Madison started cutting a new tooth & things pretty much went downhill from there. She was up all night, cranky, crying, & unfortunately for her, teething pain and the distress she puts herself through also causes breakthrough seizures. She was not herself & NOT interested in therapy by any means.
After her morning session on Tuesday we decided to cancel the afternoon and Wednesday’s lessons & play the rest of the week by ear. I’m not gonna lie, at first I was angry, upset, & annoyed. We had just driven in the pouring rain, after a night of no sleep, to New York, and after one session were now going home. We had been looking forward to this week of therapy after already having to reschedule it once, and here it was slipping out of our fingers again. It sucked. I felt terrible for my baby girl who was clearly in pain, and sad that she wouldn’t get this great experience to further her development.
But the more I thought about it, the more I realized how okay this was. Would I want to waste our time & money on therapy if Madison wasn’t going to get the most out of the sessions? Of course not. I want her to have the best chance possible at succeeding and seeing if this alternative therapy works for her. If she’s distracted and focused on the pain of her new teeth, there’s no way her brain can hone in on making new connections and recognizing what’s being done to her body. In actuality I’m so thankful Marcy was willing to reschedule with us.
The rest of Tuesday and all of Wednesday were pretty miserable. No sleep and lots of screaming. Any parent can attest to how draining it is to have your child literally cry ALL day. It’s a tough balance when your heart is breaking for your baby for being in so much agony, but your own sanity is also falling apart from the sheer madness and exhaustion of the day. Being a parent is certainly not for the faint of heart. I know everyone warns you how hard it’s going to be. But you don’t understand the type of hard until you’re in it. Add special needs to that mix and things can get even tougher. But it’s also true what everyone says about how wonderful having children is. There is truly nothing like holding a little human that you created. It is by far the most incredible thing this world has to offer. And even when Madison is screaming at me, I look down at her face and am blown away by her beauty and strength.
Thursday night things seemed to start getting better for her, but I knew she wasn’t ready for a full day of therapy. After talking with Marcy we decided to just reschedule for next week. So cross your fingers my little miracle is all good by then! I have always been a believer in the whole “everything happens for a reason” mantra. After Madison was diagnosed with meningitis it was hard to accept that state of mind. I don’t think I will ever understand the reason this happened to her. But I do still believe that God has his plan for her. I believe she survived because He knows she is going to be “okay.” As much as I wanted this week to be the start of something great for her, God knew this wasn’t the week for ABM. (Hopefully He’s cool with next week though because I’d really hate to reschedule for a 3rd time lol).
Our week didn’t go as planned, but in all honesty a lot of our days don’t. At just 14 months old Madison controls the schedule. And I think all parents, special needs or not, can relate to that. Once you have kids, you’re no longer in charge. But as long as we remember we’re not alone in having days of defeat, it’s okay. It was such a tough week, John and I both felt the stress. But after relooking at the situation and realizing what a wonderful two weeks Madison had prior to this, it helped to put things in perspective. She’s having a bad week, and in turn so are we, but we literally had an awesome weekend together as a family a mere few days ago (see photos below!), and this too shall pass.
Hell we’ve gone though SO much worse than this. Teething is a normal baby problem, and even though it comes with added stresses for Maddie, it’s almost a blessing over other things we could be facing. ABM can be rescheduled. We’ll catch up on sleep eventually (maybe). And we’ll just continue taking on each day the best we can. So yes, the week didn’t go as planned, but that’s okay. There’s always tomorrow! (And there’s always wine! 😉) Have a great weekend!