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 

River's Story: the beginning

“I've discovered that sometimes God wants us to live inside of the questions. Sometimes he wants us to linger in the waiting, hoping, praying. In fact, sometimes it's right in the middle of our darkness, in the middle of our crisis, in the middle of our Plan B struggles that God speaks most clearly.” –Pete Wilson, Plan B: What Do You Do When God Doesn’t Show Up The Way You Thought He Would?

I bought this book when I was pregnant with River. We’d been through A LOT the 3 years before (high risk pregnancy, being diagnosed with 2 more autoimmune diseases -for a total of 3-, open heart surgery for Matt, Matt losing his job and being without a full time with benefits position for 18 months, financial troubles, etc) so I thought we’d been through our Plan B. I thought we were on the other side of it. I had no clue where we were headed. I’ll be honest: I still haven’t finished the book. River was born and I learned God had a whole other Plan B for me and my family and I’m still trying to wrap my head around that.

(Disclaimer: I didn’t blog about this in real time, I didn’t facebook it, and other than with very close family and friends we didn’t talk about it. That was just our decision and it’s still one I feel was the right thing for us. It wasn’t easy and we didn’t have the full support of family and friends at times… they wanted to share everything, but we never had peace about that. We knew God was calling us to wait on Him, to be still, and to trust in Him for His timing. I knew that people were praying for us even without knowing all the details and I knew –and know- that God moved. He had the details after all. In times of crisis yes, you do want people praying… but what I didn’t want? I didn’t want my son becoming the dinner table gossip. If you weren’t going to be lifting him up in prayer then quite frankly I didn’t want you talking about him or us. I believe there is power of life and death in the tongue (Proverbs 18:21) and while my sweet boy’s life hung in the balance I only wanted edifying, encouraging, LIFE spoken over him.)

When God tells you to be still you do it… and two days after our son was born and Dr’s were telling us he’d had a brain bleed while in the womb God told me to be still. He wasn’t done with River. He’s still not, but He’s made it clear He is ready for me to be the vessel in sharing parts of  this story and to bring glory to His name. River’s story is already written and God knows what that entails, but I do not. I don’t know what the future holds for my sweet boy, but I know who holds it.

Back to the beginning… despite my high risk pregnancy I never for a second was worried about the health of River until the finals weeks of our pregnancy. (At the end I did become concerned as he started failing almost all of our BPP's which would lead to being admitted for observation, but without fail I'd be discharged within 24 hours and we'd start the whole process over again.) Because of my high risk pregnancy I’d had a targeted ultrasound (basically an hour and a half long ultrasound where Dr’s look at the heart, lungs, brain, stomach, everything for potential problems) at 20 weeks which showed a perfectly healthy baby. We were thankful, but not surprised. We’d already had one healthy, beautiful baby with no issues.  I don’t know if I was just naive or if God was protecting my heart by not allowing me to think of any other outcome other than a healthy baby. All I know is I was not prepared… that’s probably a blessing in disguise. After all if I had known there would have been nothing I could do about it. It would have been just months of fretting and blaming myself, months of tears, months of worry, months of stolen peace.

I think I was still in a haze of pain meds and shock over an emergency c-section and having River in the NICU when we were told about the bleed. I don’t remember who told us, I don’t remember much at all about that conversation…other than being scared. That conversation just seemed to be the starting point for millions of more that scared us. The bad news kept piling up and it got harder and harder. It didn’t stop at Day 2 when we learned about the bleed (by way of routine ultrasound). On Day 4 River was struggling to breathe (even though he’d been extubated days before and doing great on room air) and spitting up blood. He was re-intubated for bad blood gases and tests were ran- we were told he’d had a pulmonary hemorrhage. (Days later one of R’s neonatologists hypothesized he hadn’t had a pulmonary hemorrhage, but rather a clot from his brain had broken off and caused the distress and blood in the lungs, but we’ll never know.) He was given blood and plasma and started on antibiotics in case of infection. In the NICU you learn to be thankful for stable. You stop caring about progress and good reports and start praying for stable days where nothing happens… even the good days wear you out because you’re waiting for the other shoe to drop. We had a couple days of stable and felt comfortable enough to sleep at home instead of the hospital. Our first night home (Day 7) the phone rang at 1 AM. River’s sats were dropping even though he was still on the vent, his blood sugar had shot way up (a sign of stress in infants), his hematocrit and platelets had dropped. He was transfused platelets. They switched him to a different vent, an oscillator. Imagine a jack hammer and you’ll understand what an oscillator is. It makes the same noise as it literally shakes your child. It’s heartbreaking. Dr’s weren’t sure what was going on- maybe he’d had another bleed, maybe a clot had broken off, maybe a seizure. When some tests came back and his CO2 was through the roof (it was 180 during the episode during the night) we learned that most his vent had gotten clogged. They weren’t suctioning his vent because of the pulmonary hemorrhage so his C02 went sky high and likely caused his body to go into distress. On Day 9 he was able to be weaned off the oscillator and back onto a regular vent. On Day 10 he was extubated. On Day 11 despite great blood gases and high sat’ing River kept having moments of dropping his sats, holding his breath, gasping, etc. They ran labs which were mostly normal aside from his calcium and sodium being low. They adjusted the meds and he stopped de-sat’ing. On Day 12 we had a stable day. On Day 13 River stopped breathing. Multiple times. I will never forget holding him in a rocking chair as I watched him very simply stop taking breaths and go blue. I will never forget standing behind the nurses as they bagged him. The doctors were baffled. One minute he’d be high sat’ing and the next he wasn’t breathing as we watched his sat’s and heart rate plummet. One of our sweet resident’s came to talk to me. He said they weren’t sure if they should place him back on the vent considering he was high sat’ing most of the time. I asked him to please reintubate and they did. They ran labs and once again calcium and sodium were low.  They adjusted his iv med’s to straighten this out and in less than 24 hours we were back off the vent and stable. It seems his body had a metabolic reaction to his calcium being low. Calcium causes our muscles to contract and when River’s got low his muscles (lungs) stopped contracting. Through all these ups and downs the news of the brain bleed  had slipped to the wayside. We simply had too many other scary things happening from one moment to the next to even think about the bleed. All we’d been told was the damage was done and at discharge we’d be set up with a pediatric neurologist who would follow River. 

My sweet River on a bad day at UAB

On July 30^th we left the NICU and went downtown to eat dinner. When we arrived back in the room our nurse (one of our favorites, Amanda) was trying to calling me. She looked heartbroken and my heart sank. I don’t know who started the conversation, but we learned we were being transferred to the local Children’s Hospital for neurosurgery observation. Over the last couple of days River had started to exhibit some symptoms of increased pressure in his brain from his brain bleed (clinical term being IVH- intraventricular hemorrhage). His eyes were drooping, he was irritable, and his head circumference had suddenly shot up after weeks of being stable. When these things start happening it usually means the person needs to have surgery to have a shunt placed. UAB doesn’t do pediatric neurosurgery, so we had to go to Children’s to simply be evaluated. I cried and cried. The RNICU at UAB had become our home and more importantly we had hand-picked our care team and I completely trusted them with my son’s life. There were a few of them who I knew had come to love my sweet boy and we loved them right back. We did not want to, but we had no choice- we had to go where River could get the help he needed.

River a couple of weeks into our stay at Children's Hospital

We transferred to Children’s July 31. (I was blessed that one of my wonderful friends works there in the NICU and I was able to have some peace of mind because of her and a few other nurses we came to know and love.) “Wait and see” become our motto at Children’s. Once River was assessed by his neurosurgeon (who we are grateful we have not needed his services, but also love him!) we felt better as he let us know River was not an emergent case and at this point our game plan was to “wait and see”. We established a plan of twice weekly head ultrasounds and twice daily tracking of his head circumference. I spent most of my days texting my close friends and family, “Head circ up. Ultrasound the same. Keep praying.” Or, “Stable head circ, ultrasound same. Keep praying.” While we were grateful River wasn’t requiring surgery we were exhausted not knowing what was coming.

River was now having stable days and even making progress. We’d had no scary episodes since a few days before we left UAB and we fell into a predictable pattern at Children’s- except for feeding which was a nightmare. While at UAB he’d been on and off the vent so much he’d not had a lot of chances at bottle feeding, but when he did River had done great. Once we got to Children’s he wanted nothing to do with his bottles and most of his feeds were given through the NG tube down his nose. He started refluxing and projectile throwing up feeds and meds. We started working with Occupational Therapy. We very slowly worked up to taking an ounce by mouth during day feeds, but he seemed to stall out at an ounce and rarely did more than that. Doctors began encouraging us to think about having a g tube placed. Let me interrupt here by saying we have another child and she was 3 years old at the time… I told my mom one day that I had never questioned any decision I made for Briley. I’d never felt unsure, but with River…from the moment he was born I felt unsure. I had no clue what was best for my son and that was very hard to stomach. We weighed the pro’s and con’s of a g tube. Agreeing to the g tube meant we could come home from the hospital and work on bottle feeding at home. We’d be away from the risk of infection, we’d be together as a family, we’d be HOME (after 8 weeks in the NICU and living in a hotel this was rather appealing). I was struggling with the thought that if we agreed to the g tube did that mean we were giving up on River and not giving him a chance. Some well meaning people made me feel like we were giving up God by agreeing to the g tube. We prayed about it. We talked about it as a couple. Over and over. It was and remains one of the hardest decisions I've ever made. We told the doctors we’d like to give it a week and see what kind of progress River made with bottle feeding. If it was a lot of progress we would continue to work on feeds in the hospital. If not we would set a date for g tube surgery. 10 days later he had made no progress. On August 25^th he had surgery to have a g tube placed and for a fundoplication (a procedure where surgeons wrapped part of his stomach around his sphincter to control reflux). We began to learn the in’s and out’s of his g tube and prepared to go home. We experienced some mild set back’s (bleeding around the g tube site, brady’s during bottle feeds), but we finally brought River home on September 8^th, 2011 (exactly 8 weeks old).

Heading HOME!!!

Where we’re at now is a whole other post in itself. I would like to say that God moved mightily and we’ve seen no issues stem from the brain bleed River experienced in utero, but that is only half true.  We HAVE seen God move mightily… he spared my son’s life and he is here, on this Earth, with our family and for that I will give Him eternal thanks. Unfortunately though River does have damage from his bleed and that has led to a lot of developmental delay. Like I said… another day, another post.

So there it is… 13 months later (on God’s timeline, not mine) my sweet boy’s story… but just the beginning. I don’t presume to know the plan God has for River, but I know it’s big. When River was in the NICU I would stand over him and pray many, many things, but always that he would one day “stand, walk, talk, and proclaim the works of Jesus” in his life. I believe that with my whole heart and I hope if you’ve made it this far and read this short novel ;) you would be encouraged to only speak encouragement over and about River. We welcome any question’s you might have, but do understand that at the heart of this it is intensely personal and there are some things that we choose to keep confidential because we feel it best for River and best for our family. “Wait and see” still remains the mantra for life with River. He is on his own timeline and he’ll do things when he does them… it’s just our job to believe he WILL do these things and to work with him on these things. 

Thank you for all the love and support our family and friends (that have known all this) have shown us. There were many days when a text from one of my best friend's, a card from my mom, or just a hug and someone to cry with were the only things that got me through the day. I have seen the love you have for my son (and I get it... he's pretty impossible not to love ;) and it means everything to us. Please keep praying for him, for us, for Briley. We love ya'll!

His Timing

Matt and I have always wanted a big family. We wanted to have our children close together in age and planned on getting pregnant again when our daughter turned 1. Matt lost his job when she was 11 months old so we put that on hold and we waited on God. It was 18 long months until Matt was employed full time (with benefits), but God met our every need during that time. I don’t think there was a day that passed that my heart didn’t ache for another child. It was hard knowing that God was calling us too 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. If you’ve ever gotten into a conversation about NFP with anyone you know the biggest argument against it is how unreliable it is. We knew there was a chance of getting pregnant, but it was always my prayer that God would open my womb in His time and I knew He would. 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 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 odd’s which has proven to be a theme for River.

Back in the beginning...

I can't share our story without going back a few year's... because we wouldn't be where we are now without walking through what we did then.

Matt & I were married in August 2006 & we knew without a doubt that God had ordained our marriage. Matt is everything I never knew I always wanted. I have felt my share of heartbreak & I would walk through every second of it again knowing it would eventually get me to him. We had an amazing first year of marriage & I remember thinking, “If the first year is the hardest, bring on the next 50 years!” Over the next four years we have walked through things I would never imagine or could have prepared for.

In October 2008, we found out we were unexpectedly expecting. We have always known we wanted children (many), so for us this was a huge blessing. However, I have type one diabetes (was diagnosed in 1997 at age 12) so there were some concerns with how my body would handle an unplanned pregnancy. God was faithful and I had ZERO complications or problems from diabetes with my pregnancy.

In February 2009 we found out Matt needed open heart surgery to repair his mitral valve. He had not seen a cardiologist in 7 years because his MVP was considered very mild. He received a random email from UAB looking for people with MVP to join a medical study. Imagine our surprise when we were told Matt had a severe leak & would need to see a surgeon asap. I've come to know what it means to be surrounded by chaos & only feel sweet, sweet peace. I sat in a waiting room at 31 weeks pregnant while my husband was wheeled off into open heart surgery &my faith in my Lord never wavered. I had complete peace. That was not me. That was only God in me.

Then in April 2009, through a blood test my doctor didn’t even order he noticed my platelet count was low & consulted with my OB to follow up. To make a long story short I was diagnosed with an additional autoimmune disease, ITP. A normal platelet count is 150,000-400,000. When found mine were at 76,000. I saw a hematologist & had an IVIG treatment at 36 weeks pregnant. The treatment was supposed to “reboot” my immune system in the hopes my body would recognize my platelets & they would rise making labor & delivery safer for me & my unborn daughter. One week later I developed preeclampsia & had to be induced at 37 weeks. They did a CBC & we were expecting to be told my platelets were in the 200,000’s. They were 56,000. This meant no epidural… gulp. To make a very long story very short- 22 hours later Briley arrived. Upon which my platelets plummeted to 32,000. But God is good & He is faithful. Platelets began to rise within 24 hours & Briley was (& is) an absolute blessing. She never had one second of problems & was born completely healthy without any indication of the stress my body had been under. As a side note I was diagnosed with a third autoimmune disease 9 months postpartum. Despite a very high risk pregnancy that seemed to be complicated with everything it could be God kept me from total harm… yes, my medical chart probably seemed like a trainwreck, but nothing ever came from any of my health issues. God sustained me & protected me. He is good! If you read that & take away only one thing take away this: God had MERCY on us. He spared my life, he spared my husband’s life, & he spared my daughter’s life.

We welcomed our sweet, sweet girl into our world & felt like things were finally on the upswing. Satan saw we had not wavered in our faith in God nor had we stopped to question “why”… knowing that God has called us according to His purposes & His plans was enough. Things, we have learned, can always be worse.

In May 2009 my husband lost his job. It was a shock. We were hurt, we were scared, we were… a million emotions, but in the stillness there was hope. You see- on May 4^th we had started a prayer journal. The FIRST thing we had written & given to God reads, “For Matt to be able to quit his job.” It had become very negative work environment, all the therapists were overworked, underpaid, and unhappy. It was very clearly affecting Matt outside of work...he would come home exhausted, frustrated, and just plain down. 11 days later God answered our prayer. Who am I to question HOW he answered it? Through that period of unemployment God provided for us in ways I could never imagine. No, things were not perfect. Things were not easy. Sometimes we forget to lay it at the foot of the cross. Life is so much harder when I try to carry it on my own. It was 18 long months before a job even opened up in Matt's field and praise God, he was hired for it. During those 18 months he worked his tail off starting a side contracting and landscaping business. God provided so much work for Matt and Matt enjoyed what he was doing. Losing his job turned out to be such a blessing to him- he was completely different and it was like a literal load was lifted off of him despite the fact that we were struggling financially. One of the biggest worries when he lost his job was our health insurance. We were able to stay with our same provider and pay through Cobra for 18 months from the job termination date, but after that we would lose coverage. We knew we couldn't let that happen... with three autoimmune diseases if I had a lapse in coverage I would never be able to picked up again. It was almost 18 months to the day when Matt was hired full time with benefits. Isn't God on time? We seemed to be walking hand in hand with God during that season of our life and He poured out his blessings upon us. Sometimes it was through strangers- we had a complete stranger send us a check for $500 after hearing our story. Friends and family allowed God to use them as well- whether it was taking us to dinner, buying diapers, sending Matt work referrals, hiring Matt for work, or just flat out sending us money. They went above and beyond anything we expected, deserved, or imagined. One friend (though she will never tell me where it came from!) showed up at my house with coffee cans full of loose change... to the tune of over $500. Through it all we prayed that God would give those who has blessed us back ten fold what they had done for us.

This doesn’t even mention the countless trials & tribulations we watched our families walk through as well. We have seen deaths & births, surgeries, cancer diagnoses, & more. We had a house on the market for 3 years and 10 months and because of that we accrued a lot of debt, but through Him we were able to avoid foreclosure. Through the period of unemployment we felt like we had to put our lives on hold for a lot of things we were ready for, but not financially ready for. It was sometimes hard to remember we were on God's timeline and not ours, but we can see now how involved He was. Our lives were not and are not perfect, but my God? My God is.