River: an update

(I had every good intention of posting this almost a month ago, but Blogger ate my post and I was too annoyed to sit down and type it all out again until now. :) My whole point in doing this update then was because we were being sent to a new doctor at the Movement Disorder clinic. One of River's doctors felt he had a disorder called dystonia and referred him to this clinic. Dystonia is characterized by a lot of involuntary movement and abnormal postures. This would have been caused by the brain damage he suffered from his brain bleed in utero. The referring doctor thought he may need to go on meds to treat the dystonia and the doctor he sent us to is the head honcho of neurology at CH. The great news is that the dystonia doctor DOES NOT think River actually has dystonia and therefore will not be treating it. There are various reasons he feels River doesn't fit the mold for a dystonia diagnosis and he feels River's occasional involuntary movements are reflex issues he has due to damage on his brain. All in all, great news! We loved the new doctor, but it certainly didn't hurt our feelings to hear we do not need to return to him. :)

I suppose this is a long time coming. I'm so grateful to have people so often asking me how River is, but the answer to that is usually much more than I can belt out in passing at Walmart or school or wherever I may run into you. I usually just say, "He's great!" because he is, but I realize it's a bit more complicated than that. So how is River doing?

Well, he's great. (Sorry, couldn't help myself.) Truly he is and we are so thankful for his health. I know some people may not get that, but we realize how much worse we could have it and we are thankful that CP aside he is a healthy child.

Vision- The million dollar question is can he see. Yes, he can... we're just not sure how well. I recently learned that with cortical visual impairment (which is River's eye diagnosis and a fancy way of saying 'we don't know how well he sees') what River sees can vary from day to day. That makes so much sense to us as we often have days where we feel like he will track us or an object or make eye contact and other days where you can be right in his face and he will still jump out of his skin when you say something to him. He had a recent eye exam at school and the DR suggested we go back to our vision specialist for a recheck because she thinks his vision may have slightly improved. That is on my list of things to do so stay tuned. :) When River was an infant he was diagnosed with nystagmus (where the eyes constantly roam side to side, up and down). It's something that is NOT supposed to improve with time, but if you've been around River at all in the last year you know his eyes are ten times better at focusing than what they use to be. I would go as far to say his diagnosis of nystagmus is now null and void... and that is just God working. 

Hearing- River continues to seem to have super power hearing. ;) There were so many times when we was an infant that I wondered if he could hear at all (not to mention he failed his first two hearing tests due to fluid on his ears) so this is such a blessing. When he finally passed a hearing test (in November of 2011) he did show a slight delay in brain stem response on one side, but since then has had THREE completely normal hearing screens with perfect results. Praise God!

Cognitive- We continue to be blessed by signs of typical cognition in River. It's always interesting to be thankful your child has learned how to manipulate. :) He is following simple commands such as "No bite", "Open", and has recently started following commands in PT like "River, pick your head up three more times and we will do something else." He is able to show a preference toward toys, music (seriously- he is so my kid), people, and foods. He may not be talking yet, but he has certainly learned how to get the point across when he is not happy or wants something else. He understands far more than you would think he could or would and I am so guilty of often being surprised at the levels of cognition he shows. 

Speech- Not talking at this point, but babbling a lot. Making the same sound pattern over and over when asked if he wants us to turn the music on. Saying something that sounds extremely close to "yeah" and "momma". He is sometimes so loud that I have to cover his mouth with my hands so someone can hear me. In turn he just yells louder. Typical two year old. We are in the process of getting into an adaptive technology clinic and get River a communication device that can be adapted for his wheelchair. 

Eating- I'm guilty of forgetting exactly how far River has come in taking food by mouth. Often when one of therapists asked how it is going I say, "Eeehh." Then they watch him eat and are so shocked at how much better he is doing. Does he like it? No, we're not there yet; but he is definitely tolerating it and that is a far cry from where we started. He prefers things he can crunch and chew so we don't do typical baby foods with him. Lately we have tried poptarts, mini candy bars (thank you, Halloween), oatmeal with fruit chunks, pasta, scrambled eggs (with salsa, with ketchup, and with grape jelly). My new goal is to really buckle down with this eating and be consistent because I feel like that is what is going to help him figure it out. We're just struggling finding the time to fit it in consistently with everything else we have going on. 

PT/OT/Therapy- It's easy here too to forget how much progress River has made. Progress is just so S L O W and that's hard when you want to see your child making leaps and bounds. He does have better head control (though not total head control). He can walk in his gait trainer, but we cannot figure out why he won't do it consistently. We've felt like he was on the cusp of rolling for months now and still do, yet he isn't doing it. He doesn't seem to have interest in doing it on his own. We're not sure if this a muscle thing, a tone thing, or a 2 year old stubborn thing. He is not terribly consistent in any of his therapies- he may do something great one week and not do it at all the next. We just need to figure out WHY.

Docs:
GI- Though he still throws up on occasion we are in a much, much better place than we were a year ago. We love our (newish) GI and are so grateful to have found him. River is currently taking Prevacid and Axcid to control his reflux. He does 1 four once feed in the morning, and a six ounce feed for lunch and dinner. At night he gets about 17 ounces over his kangaroo pump. He is gaining weight well... in fact at his last feeding therapy appointment they reduced his feeds because he was gaining a little too quickly. 

Neurosurgery- We will see our neurosurgeon once more this summer (after going to 12 month appointments) and then we will be discharged from his service. Considering that at one point it was thought River would need a VP shunt placed for life we are extremely blessed and grateful to be 2 years out with NO SHUNT and about to be discharged with no need to be followed. Praise God!

Physical Medicine/Rehab- We see this doctor this week and I am anticipating med changes (not looking forward to that), possibly a second round of Botox, and maybe knee immobilizers. We're also going to see where we stand with afo's and discuss being fitted for a new pair (by a different company given all the issues we had with the last company). I will try to update about this soon. 

Thanks for caring, listening, reading, praying!

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. 

the hard road: how do you do it?

When I was 28 weeks pregnant with my first blessing I was diagnosed with an autoimmune disease that destroyed my platelets. When you couple that with the fact that I was due to give birth in a few short weeks and NEEDED those platelets to do that oh-so-important thing called clot to ensure a safe childbirth... well it was scary. Then days later we found out Matt needed open heart surgery. ASAP. 

Hi, God... I need you. 

I have often said I am the closest to God in times of trial and that was never truer than during that time in my life. To be fair he is ALWAYS close to me and never changes, but we, as humans, ebb and flow like the tide and when I need Him then I seek Him and I find he was there all along waiting for me. 

During those scary and uncertain months I made a playlist on my iPod titled "Through It All". I listened to it constantly. On the way to work, at work, on the way home, at doctor appointments, in the CICU waiting room waiting on Matt to come out of surgery, during my 22 hour labor with my baby girl. I survived off that playlist. It is full of encouraging, uplifting, and raw songs that met me right where I was at. It fed my soul and my spirit. 

When I need to feel Him extra close I still go to the playlist. Turn it up as loud as I can and cry out to Him. I needed to feel that this morning so as I baked cupcakes for Briley's end of the year school party (how did that happen so quickly?!?) I turned it on and River and I rocked out. 

You've heard of Selah, right? Heard of "All My Praise?"



Listen, we KNOW the valley. Sometimes I feel like we LIVE in the valley. But do I trust that God has his hand in every aspect of my life? Absolutely. I don't know if God tests us, I don't know if he allows things to teach us, I don't know...  what I do know is if there is one verse that resonates for us as a family it would have to be Genesis 50:20:  As for you, you meant evil against me, but God meant it for good, to bring it about that many people should be kept alive, as they are today.

And today as Selah sang, 

"You made every star,
and You taught it how to shine.
You knew my name before there was time,
and all this was just part of your glorious design.
Hallelujah, hallelujah!"

I lost it. The God of the universe knew every struggle before we were even born. He knew my son. He knew my son. And he knew what He was going to call River to long before I did. 

People often say to me, "I don't know how you do it," or "I couldn't do it." You know how I do it? With Him. I couldn't walk this road by myself. It is HARD. 

We have our days. Some days River eats real food and he crosses my room in his gait trainer and I feel so elated that I think I might float away. Some days he doesn't even want to hold his own head up and he gets so upset about something (and often we don't know what he is upset about) that he pitches a fit, holds his breath, and passes out. Some days he won't take a bite of real food and I am reminded that this g tube is life support for him as much as insulin is for me. I just want you to know that I could not do this without giving it all to Jesus. That I daily have to lay it all down at His feet and refuse to pick up my burdens. That if I sat and allowed myself to wonder what River's future will look like, to wonder if we will be able to be finacially responsible for him, to wonder who will care for Him if there ever comes a time when I or his Daddy can't... I couldn't get through a single day, I couldn't get out of the bed if I gave in to those thoughts. For us there is no other option than to trust Him. I appreciate the love and encouragement from my family, friends, and sometimes strangers commending us on staying positive and doing all we can for River (it means A LOT for someone to see your struggle), but know that what you're really seeing is God in me. And if you don't know him, you can. What He gives to me is not mutually exclusive. He offers it to us all. 

In Forgotten God Francis Chan wrote, "I don't want my life to be explainable without the Holy Spirit. I want people to look at my life and know that I couldn't be doing by my own power. I want to live in such a way that I am desperate for Him to come through. That if He doesn't come through, I am screwed." (He goes on to add, "I probably shouldn't write that word here, but it's how I truly feel about this." and I love that!)

That is where we live. Desperate for Him to come through.  

This is HARD: special needs stroller edition

I've been riding around with a special needs stroller/wheelchair in the back of my suburban all weekend. We picked it up Thursday and though I worried it would be hard emotionally I did fine. River was fussy (putting it mildly) and I guess I was too preoccupied to let it bother me. That and? Well, this little wheelchair is probably the cutest one I have ever seen. Dude's going to be riding in style, trust me. 

But then. Matt asked if I wanted him to bring it in the house last night. One of the main reasons our therapists recommended we go ahead and get it was for positioning during therapy. Getting him and keeping him in one spot where he can work on playing with toys, work on vision, strengthen his muscles, etc. They were quick to assure me, "Hey, this doesn't mean we are giving up on crawling and walking... this is just to help us out while we get there." So River's got therapy this week and I knew we needed to go ahead and bring it in. What I didn't know was that doing so was going to make it all too real. I'm going to be honest: Right now I hate seeing that thing in my house. Big Sis doesn't like the thing either... she can''t quite explain why, but I get it baby girl. Momma gets it. It just doesn't feel right. 

This isn't normal for me and if you're reading this you may be wondering who hijacked Mrs. Sunshine and took over? Sometimes we just need to say this sucks. So I am saying it. I am giving myself 24 hours to be sad and then I will move on. 

It's just that thing sitting in my living room...It epitomizes everything that has been hard about the past 18 months. It's something I NEVER expected to be dealing with... doing therapy, having numerous pediatric specialists, spending so much time at Children's Hospital, fighting insurance, cleaning up puke 3-4 times a day, g tube feeds. The list goes on. I dreamed of having a son and when I found out I was having one I saw a little boy in Carrharts following his Daddy around the yard, I saw baseball and basketball games, his first hunting trip, Friday night football games. I envisioned him following his big boy cousin's around and driving his sister crazy. I imagined my hands super full, but for completely different reasons. I'm not saying he can't or won't still do these things, it's just going to be different. And accepting that? Well it's an ongoing process. 

Here's what I am going to hold on to today: the vision of my son standing up and walking out of that wheelchair. That is what I need to hope for. Seeing it as a tool to help us get from point A to point B... well I can hate it a little less that way (but I still don't have to like it right? :)

(I have to end this post by saying THANK YOU to my best friends. The ones who received a picture of a wheelchair yesterday afternoon and let me simply say, "This sucks." They responded amazingly -the perfect balance of, 'Yes, it does.' 'I'm praying.' and 'Cutest. Wheelchair. Ever.'. They loved me right where I stood and I know they carry my hurt in their heart too. I am so blessed by their love for me and their love for my kids. I love you, K and J! And to my mom too, who went with me to pick up the wheelchair. I am sure it was hard on her too, but she never showed it. She is amazing.)