Before Raising River

Our story starts long before River came along, but I feel like to understand better where we are you also have to know where we've been. :) Matt and I were married in August 2006. I was in school at The University of Alabama so we bought a house in Tuscaloosa and Matt commuted to his job in downtown Birmingham. 

Honeymoon- 2006 in St. Thomas

We were married about 14 months when I became pregnant with our daughter, Briley. I was due in June 2006 and in April we found out Matt (25 years old) needed open heart surgery. A week later I was diagnosed with chronic low platelets further complicating my current pregnancy. Both events took us by complete surprise, but we had the sweet, sweet peace that only comes from the Father. We had decided early in my pregnancy to move home and had put our house on the market. We knew we did not want to move with a newborn and M recovering from surgery so we moved into Matt’s parent’s river house and left our home vacant and for sale. Matt had open heart surgery when I was 31 weeks pregnant and did great. Recovery, however, was long and hard and it was a close to a year before he was himself again. Briley and I came through delivery just fine and we praised God for his mercies. 

Welcome to the world, Briley!

We always wanted our children to be close in age and planned to try for a baby after Briley’s 1st birthday. One month before that Matt lost his job. Again we were in shock, but we trusted God. We put our plans for a baby on hold. Matt worked odd jobs and did everything he could to provide for our family while looking for a full time (with benefits) job. The Lord definitely provided as we never had to take government assistance during this time period and were able to continue to make house payments on the house we still had on the market in Tuscaloosa. We were able to keep our health insurance for 18 months from termination and wouldn’t you know that at almost exactly 18 months Matt received an offer for a full time job with benefits. God’s timing. 

I don’t think there was a day that passed that my heart didn’t ache for another child while we waited for Matt to find another job. We had always wanted a big family and our children close together in age. It was hard knowing that God was calling us to more children, but also knowing He was calling us to wait on His timing. I wasn’t on birth control because it really seems to aggravate my blood sugar so we relied on natural family planning. We never had a single pregnancy “scare” in the year of using NFP. Finally, Matt was hired on full time with benefits in November 2010 with a company he’d been working PRN for. We prayed and immediately began to try for our next child. In the year of NFP I had noticed my cycle was a bit messed up, but nothing too concerning. We tried for one month and then I decided to call my OB and run everything by her. I felt like we’d waited so long just waiting that I wanted to jump on top of any potential problems that would make it difficult to get pregnant. They did some testing which revealed I had low progesterone levels (one of the most common causes of infertility in women.) I knew this could be remedied with a certain prescription from my OB so I didn’t worry too much and we entered month 2 of trying. I remember precisely Matt, Briley, and I were on the way to a Christmas parade a few weeks later when I got a call from my OB’s main nurse. She said they wanted to check my levels one more time with this cycle and then they would refer me to infertility. WAIT A SECOND. I was under the impression low progesterone could be easily fixed with a simple prescription. “Well, it can,” the nurse said, “but she doesn’t deal with that a lot so she’s just going to send you to infertility.” In shock, I got off the phone and I can remember being SO MAD. Being referred to infertility meant waiting at minimum a month for an appointment then going through a full work up before anything would be done. I’ll admit to a break down in the shower the next day with a conversation that went A LOT like this:  “Are you kidding me, Lord? We’ve waited 18 stinking months to start trying to have another baby and now THIS? Now I have to WAIT EVEN LONGER.” My attitude wasn’t the greatest and I forgot whose timeline I was on, but He gently spoke to me. I very clearly felt in my spirit he reminded me He was still in control and I chose at that moment to let it go. I even thought to myself that perhaps I was overreacting a little, but I was due to start my period the next day so I chalked it all up to PMS. Have you figured out how this story ends yet? Two days later with two pink lines. 

I want to remember this, to hold it close because I need to remember how God ordained my son’s life before it began. It was not a mistake, it was by His perfect timing, and it was against the odds.

Pregnant here and keeping it a secret from everyone, except Matt and B :)

Big Sister announcement 

I had a fairly easy pregnancy my first and second trimester. We started high risk testing in the 3^rd trimester and it all went downhill from there. I was having twice weekly BPP’s and River was not passing them. This typically led to my OB sending me for evaluation and then I would either be sent home in a couple of hours or admitted for a couple of hours and then sent home. This cycle went on for about 2 weeks. (Oh, and remember that house on the market in Tuscaloosa? It finally sold during all this. 3 years and 10 months on the market.) On July 14^th I went in for a BPP and appointment. At the appointment I expressed my concerns that River was less active and that this cycle of being admitted and sent home constantly was exhausting and worrisome. I asked how much longer they were going to continue this “plan”. The doctor stated she was waiting for River to declare whether he was safer out of the womb than in and I respectfully told her I felt like he had already made that declaration. We were basically waiting on an emergency. I was sent for my BPP and River failed. Again. This time with the lowest score thus far. The tech went to consult with the OB while we waited. She sent her head nurse back who told me I was being admitted. “To have a baby…?” I asked. She said the plan was to watch me for the day and possibly induce later that evening. When I arrived on the L&D floor the attending on the floor took one look at our chart and his BPP and called for an immediate emergency c-section. She likely saved River’s life and I will be eternally grateful.

                     

Mommy's First Look and In Love

Hours after birth

Loved him from day 1

                                       
                                         
                                      We celebrated our 5th anniversary in the NICU

He was born with an apgar of 3. I have no memories of his birth as I was completely under and no one was allowed in the delivery room with me. He was immediately taken to NICU and intubated shortly after. Two days later, by way of routine head ultrasound and then a MRI to follow, we found out he’d had bilateral grade 4 brain bleeds. The next few weeks were a blur as he worsened in the NICU and had to fight for his life. He stabilized and we were sent to the local Children’s Hospital for a possible shunt due to hydrocephalus from the damage of the bleed. We spent weeks being followed and evaluated by the neurosurgeon.  “Wait and see” became our motto. We are incredibly blessed in that River never needed the shunt and after 8 long weeks (and surgery for g tube and fundoplication) we discharged home. We are still “waiting” to see how the rest of his story plays out; but know this- God is good and He is able. Every good thing we have in this life is from the Father and we praise him for his mercy and grace over our lives. 

                                   

                          

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.

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.