two

  

River, you are TWO. Give me a second to process that. In some ways it seems like it's been much longer since we welcomed you into this world. I don't know if it's because of everything we have been through  or if it's just the sheer fact that it's really hard to remember life without you. There is no doubt that life with a special needs child is complicated, but life with you, River, is also really sweet. You have to appreciate a baby who literally requires you stop and smell the roses multiple times a day. You're not yet able to entertain yourself and since you're also still 100% tube fed by us... well that equals out to two years of a lot of stopping, sitting, and just being with you. That's been good for me. YOU have been good for me. Don't ever doubt that, ok? You have made our life richer. We will always rejoice that we get to be your parents on this Earth and we will always be thankful for that gift because we won't forget how close we came to losing you.

I told myself that I wouldn't let this post be about sadness or what you can't do (yet), so here we go. A few months ago you walked for the first time in your gait trainer. I didn't know if I would ever see you walk so imagine what a gift that was for me. Now I dream of the day you are completely mobile in your gait trainer... zooming around our home and able to be independent when you want to be. I know you'll get there. We try to get in the gait trainer every other day and you are still crossing the room in it. You prefer walking sideways or backward, but we'll take it. Sometimes it's just not what you want to do and you test my patience by standing ever so still and not going anywhere. Stinker. 

You're babbling a lot, especially to your daddy. You just like talking to him more and that's ok with me. I love that you share such a special bond with your daddy. He loves you so much. I know he had dreams and visions of what it would be like to have son and having one with special needs sometimes complicates those dreams, but never have I ever heard your daddy question this life or feel sorry for himself. He is setting such an example for you and your sister and I am so thankful he is your dad.

You've also started reaching for objects. We have a play mat for you and hang toys above your head. It's so sweet to watch you swat at the toys and laugh at the noises they make. You like when I stand you between my legs and prop your arms over my knees and you usually lift your legs and practice walking when we do that. You do really good in a supported sit. Your head control is hit or miss lately, but I'm prayerfully hoping that once we get all these teeth in (we've got 3 molars in and that fourth looks to be popping through any day now) and you feel better we will see some drastic improvements. You're on the cusp of rolling and when you want to you can even scoot on your belly.

(Speaking of teeth!) 

Eating is still not going great, but you ARE eating. We try whatever we think of nowadays- melon, strawberries, cinnamon apples, oatmeal, yogurt, honey, Ritz crackers, graham crackers, potatoes, black eyed peas, sour cream and onion chips (yes, really.) You much prefer something you can chew over pureed foods. If we could get past the gag reflex and the refluxing I think we would see some great improvement. 

What do you love? Well, us, for one. :) If we leave you alone in a room for longer than a few minutes you often voice your frustration. You wouldn't see a problem with me holding you all day long. You love your daddy and you think your sister is the most hilarious person you have ever met. She can almost always make you laugh. You also laugh when I sing... I am not sure if you think I'm horrible or just entertaining. Daddy likes to watch you laugh when I laugh- he says you think I am hilarious. You love your family, not just us, and often bounce in your chair when greeted. You are sweet, kiddo. You love music, whether that be singing or just instruments. To be honest you just seem to like noises period. The quickest way to make you smile is for us to make noises. 

  

River, you make us all better. You make us grateful for the opportunities we have, for how easily things come to those of us without delays and handicaps. But you also make me grateful for life because I know if it weren't for the grace of God I wouldn't get to share it with you. I want more for you, sweet son of mine, but not for me. I'll take these hard days and long nights a thousand times over if it means I get to be your mom. I will carry this if it's how God sees fit to use me, but I want more for YOU. I want you to know no bounds and I want life to be easier for YOU, not for me. I'm sorry that things are hard and I know that they certainly aren't "fair" for the sweetest two year old I know. Life not being fair is a lesson we all learn, but it's not one I wanted you to learn this early. I've had different struggles than you, but 'life isn't fair' was one I learned fairly early too. Here's my advice: Don't let it stop you. Let it make you better, not bitter. You are still worthy of love, happiness, and life. I promise to do all I can to make life as adaptable for you as possible. I love you and you are one of the most precious gifts God has entrusted me with.

Keep smiling, handsome. Happy looks good on you.

five

    

A few weeks late, but Happy 5th Birthday, Briley! Four was pretty magical, but I'm sure you will find some way to top it. I am so proud of you and who you are. 

At five, you are entertaining... you wake up singing and go to bed singing. Everything is a song. You are sweet. You are the best big sister your brother could ever ask for and your love for River sometimes keeps me going. You are imaginative. You're a creator and you are so happy at the kitchen table surrounded by your art supplies.  I'm so thankful for your happiness... you are a very happy, very positive, easy to please child. You're normal too... we have our share of testing the limits as you work your way through developing independence and you are stubborn to a T. You conquered school this year and it was so great to see you flourish and make new friends. You are a lover of people (and hmm, wonder where you get that?) You see the best in everyone and often don't understand when people are mean. It's ok;  just keep being you. That's the best thing you can be and you are really good at it.  I love every bit of you and you are a delight.

God knew I would need you. When we found out you were a girl there were more than a few moments of wondering what to do with a girl when I had been so sure that God would give us a boy first. Now I look back and I couldn't be more grateful for the gift of you and how God saw exactly what I needed before I ever realized it.

I'm praying for you. I pray that God uses you, pray that He draws you near to Him at a young age. I'm praying for your friendships because I know how big a part they will play in your life. I pray for the man you'll one day marry and I pray he sees you for the gift you are, leads you, loves you, and protects you. I tell God how thankful I am for you- this perfect (for us) little blessing that made us parents. We love you!

He heard.

I just posted this to my facebook page, but I wanted to preserve it here too because I don't want to lose sight of it.

Making the rounds checking on my babies and felt the overwhelming need to lay hands on them and pray. So I did. I prayed over Briley and shared some things with God that have been weighing on me for her life and her future. Truthfully I am so weary that it didn't take much to move me to tears as I prayed for her. I finished praying for her and by the time I walked in River's room I was sobbing with the weight of all that I want God to take from him. I accept and I love him for everything he is, but that doesn't change the fact that I want MORE for him. This isn't enough. I want him to hold his head up and I want to hear him talk. I want to see him walk and play with his sister. I told God I knew He had used River just as he is. I see it here on FB with the sweet comments you all leave me. I hear it from stranger's. But I want more. I want this child with the grade 4 brain bleed to stand before you, to talk to you, so that you know it was nothing but the hand of God that got him where he is. I just asked God to hear my heart because I know I can't explain it well enough. I don't really pray for signs, but I just needed to know He knows my heart and my hurt. I needed to know He isn't done with this miracle boy of mine.

I ended my prayer and I walked into the hall. My aunt had called earlier, but I was putting River to bed and missed her call. She had left a voice mail. She made me laugh, she told me about her day, and she said she was praying for River. For me. That God would give me a miracle, but that even if He didn't, well He still loves us. And then she said," I'm just praying that God will not let you lose your desire for what you want for River."

I know this is long and wordy, but I just wanted you to know... wherever you are in your life... I hope you know Him. I hope you know this amazing Savior who held my hurt before I even took it to Him. Who prepared someone to give me a "sign" without my asking. Thank you to my God who is somehow bigger than I comprehend, but small enough for my little world.