Happy Birthday, River!

In the blink of an eye...

Happy 3rd Birthday, River! There's so much to say about this day... the truth of it is that I struggle every year on this day. Struggle with the memories of the weeks leading up to his birth, struggle with the memory of being told he'd had a Grade IV brain bleed in utero and the memories of 8 weeks in the NICU, struggle finding a way to celebrate a 3 year old boy who doesn't care about cake and ice cream and literally cannot play with 99% of the toys out there. So I just sit and I hold him. I tell him how much I love him and how precious he is. I think about how hard I wish I could take this burden from him. I sing to him and I tickle him. I cry a little (okay, sometimes a lot.) It doesn't look much different from our normal days.

River is a blessing and I thank God for him without a thought to his disabilities. I know God has already used River to bring glory to His name and I know He has a plan and a purpose for River. I can look back over our life before River and the timing of when he was conceived and his birth and see the hand of God in every detail. I KNOW God doesn't make mistakes and He knew what He was going to call River Thomas to long before I ever dreamed of this beautiful blue eyed baby boy. It's just that some days that doesn't make walking in our daily life any easier. Ya'll are lucky I got a night out with my husband this weekend and unloaded my feelings on him because otherwise ya'll would be getting a much sadder post. I'm struggling... and I admitted to Matt that I thought things were going to get easier as River got older, but for months now I have actually been feeling like the older he gets, the harder it gets. And not just physically, but in all aspects. The more time goes on the less I feel like we are winning at this special needs things and the more I feel like we are getting beaten down by it. And today on River's 3rd birthday I just needed to put all pretenses aside and be honsest about that. I'm trying to figure it out... figure out how to move on and not feel this way and we welcome your prayers as we continue to navigate this world.

Today I'm going to sit and hold this growing boy. We're going to sing Happy Birthday to him all day long (current count is 4 times) because he thinks it is absolutely hilarious. That's probably a testament to our singing voices. We got him a new teddy bear (with high contrast stripes in the hopes that it will help him to see it better) and The Jungle Book on DVD. What River really loves is family... so we will celebrate him by cuddling up for a family movie night later this evening. I baked him a cake he could care less about, but we'll offer him a bite nonetheless. And I'm going to let myself feel every emotion I need to. I love this boy with an unexplainable fierceness and my only hope for this day is that he knows that. I'm pretty sure he does. Thank ya'll for loving this angel boy along with us. In addition to prayer if you feel led to we would love for you to consider making a $3 donation to River's Accessible Home fund in honor of his 3rd birthday! You can donate atwww.youcaring.com/raisingriver or just share his page -www.facebook.com/raisingriver- maybe we can hit 1000 followers in honor of this sweet boy today. Ya'll be blessed, we love and cherish you all!

in need of grace

I try to be positive on this blog, on facebook, in real life. I want River's life to be as "normal" as possible so even when it's not we keep trucking on like it is. Like it's "normal" to sit on the porch at your nephew's 5 year old birthday party and watch all those sweet, beautiful children running in the yard while your precious 2.5 year old sits confined to his stroller (or wheelchair) getting a tube feed. Like it's normal having a conversation with your 5 year old about "bad" things happening so that we might use it to bring glory to Jesus' name. "I don't understand, Mom. Why does he have a boo boo on his brain? Why did that happen?" she asks. "It's ok," I assure her. Because sometimes I don't understand either. Like it's normal to debate which restaurant is the most handicap accessible and easiest to maneuver with either a large stroller at the table or a wheelchair before making plans to go out for dinner. Like it's normal to have to drag a therapy chair or stroller out into the front yard for your child when you want to spend a beautiful day playing outside. He is two and a half. He should be running. He should be running ya'll and lately I can't let go of that image in my head. I look at him and I think who would you be? Who would you be if you didn't have to carry this burden? 

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. 

A home.

Friday afternoon I posted this to my personal Facebook page:

I was humbled by many of you as you vowed to help us, encouraged us, and started making contacts on our behalf trying to get things rolling. I sat and read your comments and I just cried my eyes out. God began to move immediately. That night -a mere 5 hours after I posted- I listened as a local builder told me he wants to build us a home AT COST. There are obviously a lot of details left to be worked out and things to fall into place, but he is commited and excited to help us and we are THRILLED. And humbled. And schocked. And excited. And a million emotions I can't adequately convey. This is HUGE for our family. The idea is he will build a home modifed to fit River's needs and then we will assume the mortgage for his cost. Can you all take a minute to pray BLESSINGS on this guy? I know I am praying that God does for him ten fold what he is doing for us and God blesses his business as well. 

Since then efforts have snowballed as people have stepped forward offering their services to help on the house when we start construction, offered to fundraise, offered to pray. WE APPRECIATE YOU ALL!! Do not think for one second that anything is to "little" to make a difference. Every prayer is heard, every prayer means so much to us, every cent, every kind thought, every offer of help means the world to us. And to Him. 

I don't think we did anything to deserve this, but I am reminded that is the beauty of the grace and mercy of God. 

Grace: the free and unmerited favor of God, (as manifested in the salvation of sinners) and the bestowal of blessings.

Mercy: a blessing that is an act of divine favor or compassion. 

I will be a light for Jesus... that others will see His works in our life and that He will be glorified. I will "pay it forward" (even when I feel my contribution is little) as I know we are blessed that we may bless others. I commit my family to Him and I commit this cause to Him that He will receive all the glory and praise. I am so excited to share this journey, to share our story with you all. Please join us in prayer and thanks to Him!

You can follow our journey here or at www.facebook.com/raisingriver.