a letter to me (two plus years later)

Dear Sweet Momma,

I know. I know you feel like you're in a million pieces. That not just your heart broke, but your entire being just busted up into pieces and you will never be the same again. Here's the truth: you won't. You are changed from this moment forward.

(credit: http://rufflesandbows.tumblr.com/post/15763593197)

But you are not changed for the worse. This can make you better and that baby? The one who didn't come out quite like you had imagined or planned for is going to teach you so much. Not just about medical procedures and meds, not just about g tubes or CP (or whatever diagnosis you have been given), not just about therapy or fighting insurance, but about life. That baby is a gift. 

I know you feel alone and I know that in a way, you are. Even the most well meaning friends and family can't really get it. It's impossible to get it until you are standing in this place. Even though we are going to share so much and understand one another in a way we wish we didn't... even we cannot completely understand each other's life. This special needs thing? It's intensely personal and every story -every life- is different. 

 (credit: http://www.littleplastichorses.com/2013/10/quotes-quoted.html)

I hope you're not blaming yourself. I hope you aren't walking around with a heart full of guilt, like I was. But I know you're a mother and I bet you think there must have been something you could have done. There isn't. Show yourself some grace and let it go. I had to. I knew -if I let it- my guilt would eat me alive. That if I gave in to it I wouldn't be able to love this baby like I needed to, but when you let go of that guilt it opens up all this space in your heart. I remember when my son was born and how helpless I felt when the gravity of the situation swallowed me up. I remember wanting to grab my three year old and run. I wanted to figure out someway to go back to being pregnant... to just go back a week in time and carry him forever so we didn't have to do this. I just wanted another chance to protect him. Let it go.

I hope you have faith and I hope you can muster it up right now, even when it seems impossible. God can handle your anger and He can handle it even if it's directed at Him, but you'll be so much better off if you run to Him instead of away. He can handle your questions, your fears, your insecurities, and your doubts. He is so much bigger than our fears. Isn't it beautiful that now -at our darkest- He loves us. (Romans 5:8) After River was born I came across Exodus 14:14 ("The Lord will fight for you; you need only be still.") and let me tell you we wore that scripture out. We spent a lot of time just being still during those first months, that first year. We let Him battle for us. He carried us. Sometimes he used our family and friends -or perfect strangers- to carry us, but I promise you He came through. He will come through for you too. There is one thing you can rest in and that is that the battle has already been won. Don't lose your hope. 

Believe it or not some days it's actually hard for me to remember what it felt like when this world was all new to us. Those days when just a trip to the grocery store could make me cry because my son couldn't sit up on his own and thus, couldn't sit in a buggy like a typical baby. Those days when it seemed like every time I looked at him I could only see what he couldn't do. Now new things will make you cry. You'll see beauty you never would have before this little gift came along. Your five year old will yell, "Mom, watch what I can do!" as she does her version of a ballet leap across the room and you will marvel at how your heart can soar and ache simultaneously. I smile, praise her, and ache inside as I wonder how in the world her little body and brain can work together to pull that off while my sons can't even work together to achieve head control. Then there will be the days that baby, that sweet little gift wrapped in curious packaging, surprises you. He may not do things the way you thought he would, she may not do things on your timeline; but don't count them out. It's the middle of the night and my son is waking for the fourth or fifth time. I drag my tired body to and from his bed to console him over and over again. He calms down and I try to tiptoe out of his room. EVERY SINGLE TIME I hit that creak in the hardwood floors by his door he cries out again because he knows I am leaving him. Did you catch that? He KNOWS I am leaving him. Suddenly I go from wanting to cry from pure exhaustion to crying happy tears at these beautiful signs of cognition. Don't count them out. 

Right now, if you are new to this world, the day to day seems daunting, but this little gift you've been given WILL fit into your world and whatever challenges come along with that? You'll figure it out. And about the time you figure it out you'll do your first vacation with your new normal or your first Christmas or Halloween or... something. That's where we are right now. The "somethings" and I'll tell you they are sneaky. For one, they're supposed to be joyful times so the sadness always takes you by surprise. I think, though, that someday we will figure even this out. 

And you? You're going to figure this out too. You CAN rock this and you are going to be just fine. Sometimes you gotta go through some junk for God to grow you. It's a slow process. Don't rush it. Let yourself feel every emotion you need to. Have your moments, have your days, but as I wisely heard this week "don't unpack and live there." In a year, maybe two you're going to look back on these beginning moments of your new normal... they will still sting. I don't think that ever goes away, but down the road you're going to see this moment for what it is: a gift. It is hard, it is so hard, but life with a special needs child can also be all kinds of amazing. And like I said, you are going to be just fine. And I'll be here if you want to talk. Or cry. I'm good for that too. 

(credit: http://www.flickr.com/photos/74681369@N07/8431503500/)

With (so much) love, 

Me 

25 things about Briley

25 Questions* as answered by Briley (5 years/3 months)- hope to make this a yearly tradition around the start of school to watch her change and grow into her own skin :)

1. What is your favorite color? Pink
2. What is your favorite toy? Cookie Set! (Melisa and Doug slice and bake cookie set)
3. What is your favorite television show? Lalaloopsy
4. What is your favorite thing to eat for breakfast? Hamburger Helper! (I promise I have never fed my kid HH for breakfast lol!)
5. What is your favorite thing to eat for lunch? Subway (ham and bacon sandwich)
6. What is your favorite fruit? Apples and grapes
7. What is your favorite snack? Cookies, vanilla wafers, apples and peanut butter, and fruit snacks.
8. What is your favorite cereal? Froot Loops
9. What is your favorite drink? Pineapple juice
10. What is your favorite outfit? "Cowgirl dress" (A navy Ralph Lauren dress she calls her 'cowgirl dress'.)
11. What is your favorite game to play? Hair Salon on the iPad
12. What is your favorite animal? Horsey!
13. What is your favorite song? "Crazy Girl", "Girl On Fire", "We Are Never Getting Back Together", and "Every Move I Make".
14. What is your favorite book? The Little Mermaid
15. Who is your best friend? Reed. (And Amelia, and Sydney, and Carson... AND my little brother!)
16. What is your favorite thing to do outside? Fly my kite, jump on my trampoline, play in the playhouse, and swim.
17. What is your favorite holiday? Christmas
18. What do you like to take to bed with you at night? Pink blankie, Baby Bear, and Cat. (And butterfly blankie and my mermaid doll.)
19. What is your favorite summer memory? Going to White Water with Mommy and Aunt Sassy!
20. What do you want to be when you grow up? An artist.
21. Tell me three words that describe you. Nice, loving (people), and hugging. 
22. Name something you want to do this year. Go back to Disney World!
23. If you could travel anywhere this year, where would it be? Disney World!
24. If you could change your name, what would it be? Emma
25. If you had one wish, what would it be? For a rainbow to come every day. 

seven

We are in countdown mode for our late summer beach trip. We are so blessed that both my parents and Matt's parents include us in their beach trip every year and foot the bill for the condo. We would never be able to afford to go if not. Usually my dad rents for a month and we rent to family/friends for a couple weeks and use the rest of the time ourselves. My parents, the kids, and I usually stay sometime between 15-18 days, but this year since Briley is officially in K5 we are only letting her miss one week of school and I was jokingly whining about only getting 9 days at the beach this year with my family. My SIL said she would be crazy if she spent 9 days at the beach- that by about Day 4 she is ready to just be home. I reminded her that the Thomas' live from vacation to vacation, but I also explained that my people are my home. If they're with me I'm good.

And this guy? 

He is my home.

Today marks seven years that I chose him for life. Best decision I ever made. I know who my Savior is and I know that all the hard things I have gotten through are nothing but the grace of God, but let me tell you: I also know who put this man in my path and chose him to be my protector on this earth. I could not do it without him. Here's the other truth? I wouldn't want to either.

On our honeymoon in St. Thomas (overlooking Magen's Bay)... 

I promise, hubs, one day we will make it back there!

Matt, it won't hurt my feelings if life wants to slow down and we take up residence on Easy Street, but I somehow feel like as long as you're by my side (and we keep Jesus in the middle) we will make it through whatever else the next seven years throws our way. I love you so much. Thank you for being all the things I didn't know I needed. Thank you for being my best friend and the best father to our children. Happy Anniversary, love!

What's wrong with him?

We've been lucky. We've yet to be asked "What's wrong with him?"  I know it's coming. We've had variations of it- from the kid who asked, "What's wrong with his eyes?" to the "Why is he doing that?" to the stares. Like I said, I know it's coming. How to respond is my question. I was talking with a friend of mine this week... she's a few years ahead of us in this road and though their diagnosis is different she's "been there, done that" when it comes to a lot of the situations we're starting to face. Last week she got the, "What's wrong with her?" from a passerby. "Nothing. What's wrong with you?" was her response. I'm kind of leaning toward that one too. ;) I read another account of a dad who was shopping with his daughter. She was in a wheelchair. A stranger asked what was wrong with her... well in earshot of this child totally old enough to get it. "Nothing. Well, she's a little stubborn. What's wrong with yours?" Love that. 

I know some people actually care and want to form a connection. There have been many times I noticed a special needs child and wanted to reach out to the family and connect, but finding the right words without being offensive... that's HARD. I usually just smile and hope the conversation goes from there. It's not that I mind your concern or even curiosity... it's that the thought that because he is different means something is WRONG with him doesn't sit with me. He is perfect. And he is as perfect to me with all his needs as he would be without them.

I can probably thank the first diabetes educator I ever met for this mindset. I was a few days shy of 13 and recently admitted to Children's Hospital being diagnosed with type 1 diabetes. She looked at me, smiled, and handed me a gift with her words. "You are not diabetic," she said." "You have diabetes. It DOES NOT have you." So I didn't form my identity around being diabetic. Having diabetes is just a small part of me. That's what I want for River. I don't want him defined by a disease because he is so much more than a diagnosis. 

I'm going to share now... not what's "wrong" with him, but just a little piece of the puzzle that makes up my beautiful little gift. 

River was diagnosed with Cerebral Palsy when he was 8 months old. He was just a baby. We were at our routine neurology check up and the doctor mumbled some medical term under his breath as he was examining River. "And what does that mean?" I asked him. "CP," he said. 

I guess I was being positive, maybe I was being naive, maybe it was just an ignorant moment, but when he said "CP" so callously I honestly thought he just mean it was a sign that a CP diagnosis could be looming, or it was a symptom of CP, or something we needed to keep an eye on. I was sad to even think we could be heading towards that diagnosis (even though CP is such a broad "disease" and can range from extremely mild to severe). 

I didn't know till months later when I had to request River's medical records that he had actually diagnosed River that day. I found out sitting at my kitchen table sifting through medical records. I called him. I told him I would have appreciated a conversation before saddling my son with such a weighty diagnosis. He said he felt certain he wouldn't have diagnosed him and included it in his notes without telling me. I must have "misunderstood" he said. "Or maybe you weren't clear," I told him. Then he said it wasn't really a big deal, CP can be very mild. I gathered my composure and I told him, "I realize this isn't a big deal for you. I realize you deal with this every day in your job, but I don't. This is my son. This IS a big deal for us."

There's this thing called compassion. The matter wasn't that at 8 months old we didn't know what a diagnosis of CP was going to look like for his future. We didn't know if mild or severe was going to fit him, but did it really matter? It didn't matter to me. I didn't birth this child and imagine a diagnosis of CP coming. Ever. This wasn't just a patient for me, it was my son. My hopes and dreams rolled up into one little person. I needed to have my moment regardless of whether or not some doctor thought it was a "big deal". I needed to have my moment regardless of the severity of the diagnosis. 

We left that doctor by the way.

It's 7 months later now and though we still don't know what River's future looks like it's safe to say mild probably isn't the best way to describe it considering he isn't walking, crawling, or holding his head up at two years old. But it's still just a part of River. It doesn't make him or define him, but it does influence his life and our decisions.

So why CP? How'd that happen? The brain damage caused by River's brain bleed in utero led to his diagnosis of CP. It's likely the motor control centers of his brain were damaged and so that usually manifests by delays and disturbances in the movement of one's body, but it can also cause problems with vision, behavior, cognition, etc. It really all depends on what area of the brain were affected... and with River, it is a lot of areas. There's no cure for CP, it's not contagious, not progressive. The best way to treat is with therapy, therapy, and more therapy. ;) That's why we are enrolling River in a preschool type therapy program on top of the therapy he already gets through Early Intervention (which is PT once a week, OT every other week, and speech once a month.) It can do nothing but benefit him. There are some meds to treat the symptoms of CP and River is on a couple, but by and large we have found the best thing for him is therapy. That's why we use a gait trainer, why we have a wheelchair, why he needs braces for his feet/legs, etc. 

So if you ask me what's wrong with River I might tell you he's a little rotten or he fights sleep like a hot mess. I might tell you he's incredibly stubborn for a two year old. I'll probably also tell you he's been one of the biggest life lessons I've ever had, that he loves music, and is generally (finally) a happy kid. I won't tell you he has CP... because it's not wrong. It's just different from you and me. 

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.