This isn't me doubting God or His vast love for me, but I will be honest with you... I've gotten stuck in this moment just wishing the cup had passed. I cannot believe how 2.5 years after this became our life it can still hurt so bad. It is easier to let you think I am strong, that we have it all together. To let you think that we're just fine. It's easier to say God can heal him than to admit He may not choose to.
I don't want to burden you. I don't want there to be any doubt that I love this boy just as he is. If this is the cross God wants me to carry I want to honor Him with it. And I want to honor River. But it is inexplicably hard some days. The moment I think I have figured it out is usually the exact moment before I realize I am flailing about trying to keep my head above water.
And I'm frustrated. I'm so frustrated. That's a post for another day, but I'll just say that navigating this special needs world shouldn't be so dang hard. It shouldn't be so costly, it shouldn't be so dadgum hard getting help. (I'm talking about from doctors, from insurance, from the state, from organizations, from charities, etc... not from our wonderful friends and families who have gone above and beyond.) Walking in this world feels lonely and it's a constant fight to educate yourself, advocate for your child, schedule this appointment, schedule that therapy, and search out options for your child- options for school, therapy, play, etc. River goes to special needs school two mornings a week where he plays and receives speech, physical, and occupational therapies. We also have an early intervention PT session every Thursday, early intervention outpatient therapy every other week on Monday's, and early intervention speech therapy once a month. He usually has a doctor appointment or clinic visit twice a month. He sees a feeding therapy team and goes to a CP clinic as well. We do this. We do all this and at the end of the day I still crawl into bed feeling like I dropped the ball. I beat myself up cause he's not in water therapy and vision therapy and intensive feeding therapy and hyperbaric oxygen therapy. It is hard finding that balance of doing all you can for your child with special needs while at the same time not letting it rule your life or your family.
Here's where I am struggling: no, it shouldn't be so hard and no, all those scenarios I mentioned in the first paragraph are not normal... but it is hard and it is normal for us. This is our life. If you aren't walking in this world you have no idea how UN accessible life is for those with special needs. And I can say that because I, too, had no idea until River came along. If it wasn't so sad it would be laughable. I guess because River is growing and getting older my eyes are opening because we need that accessibility more and more. We will continue to learn, grow, and adjust which will prayerfully make things easier in the emotional aspect... but physically and financially life may not get easier. It may just get harder. The stinky part is there's no time to sit around and feel bad for River, feel bad for our family. Life is happening around us and we have to keep going.
Did you know I dread going to the park? I have a 5 year old that LOVES it. She asks to go at least once a week and we do because how am I supposed to tell her that I can't handle it? That some days it makes me want to curl up in a ball and sob that River is sitting on the sidelines. We put him in her lap or our lap down the slide and we swing him in our lap, but it is not the same. We're in the season of constant parties and celebrations. Kids playing, bouncing in moonwalks, running around. I love my friends and I love their kids and we want to be involved. We are thrilled to celebrate with you all, but if I'm being quiet or seem different... it may just be I am trying to find a little grace to keep going. To reconcile the fact that sometimes I feel like River is trapped inside a body that won't do what it's supposed to. I am grateful. I am so grateful for his cognition, but the older he gets the more I think he realizes what is going on around him and I feel ill equipped to explain to him why he physically can't do these things with his sister, his cousins, his friends. Matt, River's daddy, loves to hunt and fish and build things. I love that about him, but I sure wish that was something he could easily share with his son. It's baseball season. My facebook is rampant with pictures of these sweet little boys practicing and running the bases backwards. Parents so excited about this fun stage in life. I wanted that too. I just need a little grace, friends.
My sweet friend, Brittani, sent me this:
She didn't know I'd been staring at this screen, that I'd started this post weeks ago, but I'd been too sad to post it. She said it made her think of me. I needed a reminder that I can't keep it all in, that I don't have to do it alone, that my friends can handle my sadness. You may not know what to say and you may feel guilty you have typical children (DON'T FEEL GUILTY!), but I appreciate that you care enough about us to pray, to read this blog, to support our Raising River efforts (www.facebook.com/raisingriver). So this -all this- is my lengthy way of saying I'm still figuring it out. We're still trying to be OK. We want to be OK. I have to accept that there will be good days when I feel like we have conquered this world and made our peace... and there will be hard days where it all feels raw and new. I'm still working through this balance of being so in love with this special little boy while letting go of of all the visions I had as I carried him in my womb. They didn't involve a wheelchair or therapy or special needs schools; but they also couldn't fathom the beautiful smile and contagious laugh that lights up my world. I just need a little grace some days. At least that is universal.
Posts
