3 Years and an Update

Today Eden is 3! When she was born, I wasn't sure we'd see this day. When the doctors said they didn't believe that she would live beyond infancy, I didn't know what infancy meant- maybe a year, two, even 3? 

The truth is that her birthday is always a little hard- the memories of her birth and the shock, sadness, and grief that surrounded those initial days. And then the present reality of a child that hasn't changed one bit or reached one milestone (besides smiling!) since she was born. It's not the fact that she isn't reaching milestones that makes birthdays hard, it's that she can't enjoy any of the fun things that make birthdays with kids so special. She can't see the balloons or taste the cake or delight in the presents. And that feels hard on special days like birthdays. 

This year I've really tried to reframe my thinking though and focus more on the celebration of her life- who she is, not the loss of who she might have been. And to take time to think about the kindness of God in giving us Eden, and in giving us 3 years with her. As I was thinking about this the other night, two words came to mind: joy and gain. 

It is a great JOY to care for Eden. I think of the verses "whatever you do for the least of these, you do for me" (matthew 25:40) and "it is more blessed to give than to receive"(acts 20:35). Eden's complete helplessness and intense care make the truth of these verses so sweet. The joy doesn't come at all from what she's giving back because she can't give anything back (though her occasional smiles do light up our days!), it comes from God and serving God in this role that he's given us. 

It has also been great GAIN to our souls to have Eden as our daughter. How else could we begin to grasp the utter brokenness of the world and the far reaching effects of the curse than to see Eden suffering everyday through muscle spasms, seizures, feeding intolerance, tight muscles and joints, and a host of other things most of us will never face. How else could we begin to come to terms with our own mortality and the mortality of the ones we love than to have such a fragile one living amongst us? In our family, we talk about death and the precious promise of Jesus' return probably every week. I don't think we would've been like that apart from Eden. 

There are so many things I'd love to share- I always thought I'd write a few blog posts called "Lessons from Eden". I'd share as much as I could of all the ways God has used her precious life to change me and our family. Time doesn't allow for that today, but I'll end with a couple quick stories from just yesterday.

On our way to swimming lessons, Eden started to shift in her car seat. Maybe I didn't have the straps tight enough, but either way, her lack of trunk support caused her to basically fold in half. She was coughing and there was mucus all over her arms and face. Without being asked, Josiah got up from his seat, repositioned her in her car seat, completely wiped up all of the mucus and got her situated perfectly. Josiah said, "Mom, I got her all cleaned up and I fixed her in the seat. She looks better now, doesn't she?" 

And then later that same night while I was giving Eden her medicine, she started to cough and began to vomit. I flipped her over my shoulder so she wouldn't aspirate. Just as she was beginning to vomit, Jacob walked in the room and said, "Mom, her suctioning machine!" He grabbed the suctioning wand, I turned on the machine, and he held her head gently as he suctioned the vomit from her mouth. 

Some people might feel bad for the boys hearing those stories, but I couldn't be more proud or thankful. No amount of soccer goals or good grades could compare with boys who are growing in their love and compassion for helpless ones, like Eden. And that's just one of the ways I've seen growth in them. One of my prayers since the beginning has been this: God, don't let us waste any part of this. Accomplish every bit that you intend, in my life, in Don's, and in our boys as well. We don't always see the answers to those prayers, but we do get glimpses now and then. And I'm just so thankful. 

When people see our family (and we tend to stick out), I'm sure they see loss, but I wish they could step inside and feel the joy and see the great gain she has been to all of us. We're the *lucky* ones. 

**** I'm sure many of you are wondering how she's doing and the truth is she's doing ok. Nothing has really changed over the past year. She still has seizures, she still doesn't sleep much, she still needs a lot of suctioning. Her body has grown bigger, so her scoliosis is worse and it's harder to get her arms and legs to stretch out due to the tightness of her muscles and joints. She's on a lot of medication and most of those meds have increased greatly over the past year. So is she better or worse? She's worse, but we've been able to maintain some stability for her by constantly increasing her medication. One huge blessing of the past few months is that we were approved in January for nursing care and medical assistance from the state. She received a waiver for medically fragile children that allows us to get a ton of nursing hours that are covered by the state and now all of her medical expenses (outside of what insurance covers) are also paid for by the state. This has been HUGE for us and we are so thankful. We currently have 3 wonderful nurses that work with Eden giving us some respite 4 days a week and 4 overnights a week. ****

A New Year

So teach us to number our days
that we may get a heart of wisdom.

Psalm 90:12

2017 was a hard year. A good year, too, but also a year of learning a new normal- or maybe better explained as a year of realizing that normal will never look the way it once did.

Just before Eden's first birthday, we put her on hospice care. And while we've known that her condition is terminal since the very beginning, signing those papers and taking that step was very hard. But working with hospice has also been a huge blessing- they've helped to remove much of the burden that was on me regarding medications, prescriptions, insurance, doctor appointments, therapy, and on and on. They've also been able to help Eden in many areas that have made our day to day life much easier- she cries much less than she once did, she actually sleeps now (though she does still wake up throughout the night), and overall her comfort and disposition have improved greatly. 

So, in many ways, I'd like to say she's doing better. And in the ways that impact our family, she is doing better. But the progressive nature of her disease is taking its toll on her growing body and we are also seeing those signs. She struggles now with temperature regulation and often is warm in certain areas of her body and very cold in other areas. She has a neurogenic bladder and that has gotten worse over time- meaning, her brain doesn't tell her bladder to empty regularly so she often goes at least 24 hours without urinating, putting her at significant risk for bladder infections. The issues with scoliosis in her spine are worse and at her last appointment we also learned that her hips are out of socket due to her lack of mobility. We have some things in place to try to help with some of these issues, but we also know we are fighting a losing battle- we will do what we can to improve her comfort and preserve her quality of life as much as possible, but this is the nature of her disease. Things will get harder as she gets bigger- and we are watching that slowly unfold. 

So when I look ahead to 2018, I don't presume that it will be any easier or better than any other year. Of course I love fresh starts and I love setting goals and thinking about the things I want to improve in the coming year, but as it concerns our little baby, there is no happy ending in this life, and the forward march of time puts us closer to her last days. And only the Lord knows if that'll be in 2018 or not. 

But I can trust God with that. And I'm learning that in every area where there's the sting of grief and loss, I can trust God with that, too. 

When I woke up this morning thinking about the coming year, some of my favorite verses came to mind from Lamentations 3, verses 21-23 "But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." And that's my hope for the coming year- whatever it brings, whatever trials we face, God will be with us and his love and mercy will never end.

Because it's been so long since I've posted an update, here are some pictures of our family from the past several months.

 Luke turned 3 at the end of May. He is a happy, delightful little boy and I'm so thankful for him!

We enjoyed a nice long weekend in Michigan over the summer- beach days, ice cream, and lots of fun. 

The twins turned 6 and we celebrated with a little family party. They are curious, adventurous, happy boys and they fill our home with so much life! 

Don and I celebrated 14 years of marriage. He's such a great husband and father- I'm so thankful for him. 

The twins started kindergarten this year- they love school and are doing great! 

The weather this fall was beautiful and I was able to bring Eden's chair outside on many occasions and enjoy sitting on the porch with her. 

We had Eden dedicated at church this fall and she looked so pretty in her little pink dress. 

Jacob continues to be an adoring older brother; he's a big help to me in how well he cares for Eden. 

The boys ask often if Eden can sleep on them- they love snuggling her. 

Luke also loves to "play" with Eden- I'll admit these moments are almost always joy mixed with sorrow- so thankful and happy for the love they have for her, and yet sorrowful too over the things that will never be. I know they'd love to have a baby sister crawling all over the house, laughing at their silly faces, and actually playing with them. But God knows this, too, and I believe that God is doing something special in their hearts as well. We talk a lot about what Eden will be like when Jesus comes back and our boys enjoy talking about how Eden won't have a tube and she might love pizza like they do, and she might run faster than them, and on and on. 

This is one of Eden's pieces of equipment. It is a stander that is helping her put some weight on her bones to try to strengthen them and slow down the process of osteoporosis. 

We had some family pictures taken over the summer. Our crew is not what I would have imagined. The other night Don held Eden as I fed her manually through a tube in her stomach (our feeding pump wasn't working and I had to push the formula through by hand). I looked at him and said, "Did you ever imagine this is what life would be like?" We both smiled at each other and I knew we were thinking the same thing- it's actually better than we could have imagined. Harder, yes- no question about that. But richer and fuller, too.

**************************************************

I had the opportunity to share Eden's story a few weeks ago at an event at our church for people who are grieving during the holidays, and though it was our story, it was ultimately the story of how grief and the gospel intersect, and the hope that we have because of Jesus. You can listen here if you are interested. 

Living on the Rock

There are a few perks to a hospital stay. One is curly fries in the cafeteria. Another is HGTV. Recently I saw an episode where a family was purchasing a second home in the Caribbean. They wanted to be able to give their children an amazing childhood- snorkeling, parasailing, beach days, a beautiful view, etc. all a plane ride away. At one point in the episode, as the husband was looking out over the ocean on their new balcony, he said, "This is living on the rock." I almost laughed out loud. 

To be clear, there's nothing wrong with a second home or wanting to give your child a really fun childhood, but what does living on the rock mean? Well, to this man, it appeared to mean living a life of luxury- beautiful views off your balcony, a short walk to the beach, and endless entertainment.

Psalm 18: 1-2 says, "I love you, O Lord, my strength. The Lord is my rock and my fortress and my deliverer, my God, my rock in whom I take refuge, my shield, and the horn of my salvation, my stronghold. And then verse 31 of the same chapter says, "For who is God, but the Lord? And who is a rock, except our God?"

I began this post back in February when Eden was hospitalized for a respiratory infection, her second respiratory infection of the season and her fourth hospital stay since she was born. For various reasons, I didn't get around to finishing the post. 

A couple of weeks ago, Eden was hospitalized again, but this time it was for uncontrolled seizures. She began having seizures several months ago, but they were very short seizures and generally happened infrequently. This time, her seizures were lasting longer and were happening so frequently, that I feared that her little body would not be able to recover. We were told on her second day of life that she would likely not live beyond infancy and that due to the severity of her brain damage we would always need to hold her loosely. This week we were told again by a new neurologist that kids like Eden usually die from respiratory infections or seizures, and that she would be susceptible to any type of seizure at any time for any reason and that any of them could be fatal for her. And should she live to 5 (his words), she would have a very tough road ahead of her. 

So here's what's true and has been true from the beginning: She is a blessing. We love her and she gives us lots of joy. Her life is not in vain. She was made with purpose and intention, and God will complete his purposes for her life. One day she will be made whole and perfect and she will no longer suffer.

Here's what's also true: This is very hard. Not only a hard prognosis, but hard day to day living. Managing doctor's visits, therapies, insurance, medical bills, pharmacies and prescriptions, medical supplies and equipment- that's all surface level annoyance. Hard, but more in the annoying category than in the suffering category. Lack of sleep, lack of freedom and time, having Don and I pass like ships in the night. Certainly not ideal. Hard. But the hardest level yet (apart from a very hard prognosis) is watching your child suffer. Watching her body stiffen and tremble and shake uncontrollably time and time again during seizures was probably the hardest thing we've witnessed to date. We feared that maybe our time with her was coming to an end, and there were many times that I kissed her cheeks or rocked her in the night and wondered if she would still be alive in the morning. 

I've wanted to hide under my covers and cry and maybe even sleep for days, but life goes on and has to go on. There are soccer games and birthdays and end of the year parties and children that need snacks and baths and a baby that needs medication and laundry and on and on. 

So how do you endure and persevere and get up each morning and do the same hard things over and over again? You put your hope in the true rock, Jesus Christ. You believe God more than what your eyes can see. And you trust that his word and his promises are true, no matter what it looks like in the short term. And you don't believe the lie that ease in life leads to happiness in life.

But we are weak and often grow weary, so for those that are praying for us, here is how we would love for you to pray:

• Pray for Eden's comfort and joy. We want her to be as comfortable and as happy as possible for whatever time she has. We began hospice care this past week and will likely eliminate some of her therapy in order to preserve her comfort.
• A note on hospice: we've been told that pediatric hospice is not like adult hospice- so in other words, they don't wait until the very end to come into a person's life. Their overall goal is to keep her comfortable and add to her quality of life and also to remove some burdens from us. We will now get all of our prescriptions and supplies delivered to our house through hospice. We will also have drs and nurses visit her and treat her at home. This will be a good thing! But, it's also hard and I've struggled more than I anticipated this past week being confronted again with the severity of her condition and the reality that we will not have long with her, though the timeframe is still very much unknown. We've also been adjusting medications and she's been alternately super agitated and super sedated. The past day and a half she has basically slept day and night, her eyes are hardly open, and there haven't been many smiles. We will need to try various combinations to find the right mix that makes her comfortable but not totally sedated. I miss her smile and the little spark in her eyes. 
• Pray that God will complete his purposes for her life and that he would get much glory from her life. 
• Pray for our faith, that it would not fail. Pray that we would be strengthened and renewed day by day and that God will give us faith to endure. Sleep is good, help is good, but faith is what we need.  
• Pray that God will complete his purposes for our lives through all of this and that we will submit daily to his will and his plans for us. Pray that as we look to Christ, we will be conformed more and more into his image.  
• Pray for our boys. They love their little sister so much and sometimes watching that love gives me a pang of sadness. Pray that God will use this for their good as well. 

And Happy 11 months to our baby girl! You have brought us so much joy and have ushered in a richness to our lives that we never could have imagined. We love you for eternity. 

Revelation 21:4-5 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” 

From one of my favorite songs (From the Depths of Woe):

Therefore my trust is in the Lord, And not in mine own merit. 

On Him my soul shall rest, His word upholds my fainting spirit. 
His promised mercy is my fort, My comfort, and my sweet support. I wait for it with patience. 

What though I wait the live-long night, And ’til the dawn appeareth. My heart still trusteth in His might, It doubteth not nor feareth. Do thus, O ye of Israel’s seed, Ye of the Spirit born indeed, And wait ’til God appeareth. 

Though great our sins and sore our woes, His grace much more aboundeth. His helping love no limit knows, Our upmost need it soundeth. Our Shepherd good and true is He, Who will at last His Israel free, From all their sin and sorrow.

This is also helpful: 

Embrace the Life God has Given You

Six Months

Eden is 6 months old today! On one hand, the time seems to have flown by, and on the other hand, it feels like the longest, hardest six months of our lives. 

Shortly after my last post, Eden began having seizures. At first, I wasn't sure if the unusual behavior was a seizure or not (though my intuition was telling me it was); I had never seen someone having a seizure and didn't really know what to expect. For Eden, her face turns off to the side and her body becomes rigid with rhythmic, pulsating movement in her arms and legs. The first one didn't last very long, but when she had another one within a couple hours of the first, we called her doctor to see what we should do. They recommended taking her to the ER right away so that she could be monitored to make sure that her body was responding to and recovering from the seizures. Even though the seizure activity was unsettling, I had been expecting it- it is one of the major symptoms associated with her diagnosis. I packed up a to-go coffee (since it was late at night) and headed to the hospital. When I walked in, Eden was crying really hard from the car ride, and I felt like every eye turned to watch us. I stepped to the back of the line to check-in, but was quickly rushed to the front of the line, and was barely asked my name before being rushed to the pediatric section of the ER where swarms of nurses and doctors immediately took her from me and began hooking her up to all kinds of monitors. When I left our home, I wasn't scared- I figured they'd actually send us home and just tell me that this was to be expected. When the doctors began surrounding her, I broke down and started to cry because it all felt more serious and grave than it had a few hours earlier. I remember a moment later when I was alone with her in the room and I started taking pictures and videos of her because I started to worry that this might be the end. That the seizures might start up and she'd have a bad one that she couldn't recover from. I took pictures of her feet and toes and close ups of her eyes. It all seems a little silly now because she's doing pretty well but that memory is etched in my mind and more vivid than most of my memories. 

We ended up staying in the hospital for two days after that first episode, and the result of that was an increase in some medications- one for the seizures and another to dry up her secretions. It also put us on the fast track to get some nursing help at home and to get in with a developmental pediatrician in the area. Eden is seeing one of the best doctors in the area who specializes in kids with complex medical needs. She is a real blessing and truly cares about Eden. Each time we've seen her, she has held and kissed and rocked Eden as if she were her own grand baby. I'm so thankful for her and that she is the one overseeing all of Eden's medical care. 

With that said, there are still a lot of unknowns- she still doesn't sleep very well and often cries during her feeds and we're trying to figure out if these issues are because of reflux, muscle tightness/spasticity, or if it's a separate neurological issue. The doctor believes that because of her visual impairment, she may not be distinguishing day and night, which is why she doesn't appear to have a true night sleeping schedule. Basically, we just need to pray for wisdom and help and for God to give us insight into how to help her best- I'm comforted in knowing that he knows her issues; he knows her inside and out, and he loves her, and I believe he'll give us the wisdom we need.

The nursing care has been a huge help and blessing as well. We often have a nurse as many as 4 days a week and 4 nights (though some weeks we have less days or less nights). It has helped us resume some normalcy and I feel like I can get to the grocery store or take the boys to the library or just spend some time playing with them again. 

At the same time, it isn't exactly natural to hand your baby over to someone to care for her. It feels a little strange to go out as a family and not have her with us and it's an adjustment having someone else in the house with us most of the day. On the day of the nurses' orientation when there were six women in our house being trained on Eden's care, I had to hold back tears the entire day because it all felt so overwhelming and not how I would have chosen life to be. But running through my mind was the reminder from a recent sermon our pastor had preached where he said that the path ahead of us is laid with the stones of good works that God has prepared in advance for us. I kept thinking, "There are good works on this path, Sara. God has prepared them for you so that you would walk in them, so walk in them, don't be afraid, just keep going." I think it was God's kindness to remind me that this is not about me or how I wanted life to work out, that there is more going on than what my eyes can see, and that I can trust that this is for my good and for his glory. And when I'm thinking rightly, I want those things more than I want my own comfort. 

So, this may seem like a sad update, and there are still some sad days, but we are finding our new normal and there are also lots and lots of good days. We love our little Eden girl and she gets all kinds of kisses from us and from her brothers. She has started smiling more frequently and often will smile just upon hearing my voice when I come into the room. She also does a little giggle when I tickle her belly or when Don tosses her in the air (the same way he tossed her brothers when they were little). She is a delight and despite the difficulty, I truly count it a privilege to love and care for her. I believe she is one of God's special ones and there is something that just feels so right about tending to her and sweetening her days with songs and kisses and snuggles. 

The other day we even joked that she might end up being our easiest child. The twins were fighting over a Ninja Turtle robe, Luke was crying for milk (milka as he calls it) and Eden was just content being held. I thought, she'll never fight with her siblings, she won't have her heart broken, she won't struggle with jealousy, she is being spared a lot of heartache. And it feels pretty simple to see the task of parenting her as just loving her, taking care of her, and praying for her. 

The song we usually sing to the boys before we put them to bed is "Tis So Sweet to Trust in Jesus" and I often sing that to Eden as well. 

'Tis so sweet to trust in Jesus,

Just to take Him at His Word

Just to rest upon His promise,

Just to know, "Thus saith the Lord!"

Jesus, Jesus, how I trust Him!

How I've proved Him o'er and o'er

Jesus, Jesus, precious Jesus!

Oh, for grace to trust Him more!

I'm so glad I learned to trust Him,

Precious Jesus, Savior, Friend

And I know that He is with me,

Will be with me to the end.

Anyway, we really are doing well. Eden continues to have seizures, but she hasn't been sick in quite a while and her overall temperament seems to be improving. There is lots of laughter and joy in our home and God is at work in us and (I hope) through us. This is the path that he has chosen for us and there is freedom and joy in submitting to that path and saying "Yes, Lord". 

3 Months

Eden is 3 months old today! Wow- it has gone so fast- partly because she's our fourth, partly because we've been in a bit of a tunnel, and partly because we're making it one day at a time. 

In truth, the past two weeks have been very hard. We've struggled with finding the right formula- one made her constipated, another caused too much reflux. We've struggled with way too many appointments, not enough sleep, and a baby that cries almost constantly when she isn't being held. We would worry about any baby that cries a lot (even though some babies just cry a lot), but because of her condition, we're constantly asking if she's in pain- is her feeding tube the wrong size, is this normal aspiration or too much, is she having seizures (what is that even going to look like in a baby- will we know?), can we just let her cry (is that even safe for her?), and the list goes on. She's doing well and yet she's fragile, so when she struggles we wonder if this is just her getting worse. 

She will have good days and bad days (and we've experienced both), but she will not get over this- this isn't just a phase. There is no treatment, there is no cure, no exploratory medicine or therapy- just working with what she has and hoping to maximize that and keep her as happy and comfortable as we can. In some ways, there's freedom in that kind of diagnosis- we don't have to spend hours searching for specialists or have the burden of finding the just right care or treatment that she needs. We just need to love her and take care of her for as long as we have her. But the days and nights can be very, very hard. 

Two take aways from this, stemming from one truth: God often does give us way more than we can handle (the popular phrase that he doesn't give us more than we can handle is dead wrong), but there are at least two reasons why he gives us more than we can handle. 

One is to make us depend on him. In 2 Corinthians 1:8-9, Paul says, "we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead." I have often been burdened beyond my strength and I have despaired of life itself, but it's teaching me to look away from myself and to look to God who "raises the dead". Sometimes that "raising" comes in God providing the strength to bear up under the trial, to have joy in the midst of it, to run that feed one more time even though she may scream a solid 45 minutes during it, sometimes it's merely giving me the ability to just put one foot in front of the other, and sometimes it's sending women to come and clean my toilets, which leads me to a second reason God often gives us more than we can bear.

We are given more than we can bear so that others can minister to us and the beauty of the church can be shown, to the glory of God. We have been the recipients of so much love and kindness over the past months. We have received countless cards, gifts, flowers, meals (I think we were brought over 50 meals!), notes and texts of encouragement, and prayers from people literally around the world. Yesterday was so, so hard- Eden slept about an hour all day, cried most of the day, and we were all a wreck (okay, mainly I was a wreck, but when Mom's a wreck, it's hard on everyone). And in God's providence, today a group of women came over and cleaned our house and brought a meal. A neighbor girl came and played with the boys (for free! because she wants to help). Many people texted and messaged me to say they were praying for us. And today was much, much better. I was at the end of my rope and God provided the help and rescue that I needed through the kindness of others.

It isn't easy to ask for help or to admit that I need it- I'd rather be the one serving, bringing meals, and supporting someone else. I'd rather be able to take care of everything on my own, but I'm not able to do that right now. Right now, I'm the recipient of all of this kindness, help, and support, from God and from others. And it's a bit humbling and overwhelming.

So, thank you- thank you to all that are praying for us, helping us, and providing for us in many practical ways. Thank you for extending grace to me when I haven't returned your phone call or texted you back or sent you a thank-you- I will get to it, I want to get to it. All of your kindness is seen and appreciated, and I wish I could hug you all and tell you how much it means to us.

I'll end with some family pictures- again, gifted to us.

A Neurology Update

I decided after my last post that I wanted my next post to be really "normal" and encouraging... happy family pictures maybe. And we are a happy family and I have many pictures I could post for that, but I'm sitting here in a quiet house looking at my baby girl and thought I'd give a quick update on our last neurology appointment, mainly to give some specific prayer requests. 

On Monday we saw our neurologist and she evaluated Eden for the first time since we left the NICU. I was hoping for an encouraging appointment, but sadly that wasn't the case. 

The cliff notes version is that she evaluated Eden's response to light and to tracking movement and she doesn't believe that Eden will be able to see. We won't know for sure for a few more months, but she expressed quite a bit of certainty regarding this (more certainty than I would have liked). She also checked her muscles and she believes that Eden is already showing signs of cerebral palsy because her muscles are quite tight. These things may seem relatively minor compared to her major diagnosis of microcephaly and lissencephaly, but it was still hard to hear. 

Additionally, she recommended that we begin palliative care for Eden. This is going to be a good thing because it will put one doctor in charge of all of Eden's care and this doctor will help to coordinate the other care that Eden receives. This is a hard thing because palliative care is for terminal patients... it's like hospice but for patients where the time limit is more uncertain. She was very concerned with how often Eden is aspirating and believes that she's at a pretty high risk for developing lung infections, which would likely be fatal for her. There is a medication that we could put her on to help dry up her secretions, but there are adverse side effects so I'm not sure that's a route we want to take. She also brought up again "end of life" care and that we'll need to think through our main goals in determining the care and interventions we decide to take for Eden. 

There's much more to this, but you can imagine why it was a hard appointment. 

Here are a few specific ways I'd love for you to pray for us and Eden:

• Pray that we find a great palliative care doctor. Someone that will be helpful and honest, but also compassionate. 
• Pray for us as we continue to monitor and manage Eden's secretions. 
• Pray that we'll have wisdom and be able to care for Eden with excellency. Lots of things come up that I don't know how to handle- like today when there was blood surrounding her g-tube. It's all foreign, so please pray that we'll be given the wisdom and insight that we need. 
• The cherry on the top of this is that we'd love for her to be able to smile- really smile. It would delight us and her adoring brothers. 
• We'd also really love for her to see. I'd love for her to be able to see our faces and to see the world around her. We do know that she can hear, and I'm thankful that this is a way that we know we can connect with her- every day she hears that she is loved, that she is precious, and that's she's just the sweetest little thing. And we mean it, and I think she knows that we mean it. 

As I've said before, I really can't think about the future too much, but when I do and the dark clouds start to gather, I remind myself that that grief isn't for today. Today she is doing great, so today we can celebrate. For now we're going to hold her and enjoy her, her doting brothers will kiss her endlessly, we'll go for walks, play at the park, and be thankful for the blessings we have today. 

Some Random Thoughts on Grief and Grace

I know many of you are wondering how we're doing. And I wish I could answer that easily. 

On the one hand:

• We are adjusting to caring for Eden. 
• We are getting used to sleeping less. Really.  
• I'm more relaxed about a messy house. 
• We've had lots of wonderful meals brought to us (thank you!)
• We are getting out of the house more and returning to some normalcy. I even took all 4 to the doctor the other day. We showed up a little late, and Josiah had no shoes on and only one sock but we made it. 

On the other hand:

• This is hard and there's no end to that in sight. 

The same goes for Eden. On the one hand, she's doing great! But I'm not even sure what I mean when I say that; I guess I just mean that she's home, she's eating and sleeping, and nothing tragic or too frightening has happened yet. On the other hand, she struggles daily, sometimes hourly, with her secretions. She aspirates regularly, she sleeps sporadically (and her sleep is often interrupted because of the discomfort from the secretions pooling in her mouth), her g tube site is healing somewhat normally but has needed some extra tending to over the past days, and we're still trying to figure out how much food to give her and how often and over what length of time to help control her reflux (and it's a huge guessing game since the poor thing can't signal when she's hungry or full because we are artificially filling her belly). But we have made some strides in the past couple of days, and I'm thankful for that. 

So I weigh all of those things and feel like we still come out ahead. We're doing good. God is providing all that we need each day. 

I've been reading through 2 Corinthians regularly and in chapter 6, verse 10, Paul talks about being sorrowful, yet rejoicing. And I think that sums up our new reality. 

There is real rejoicing. We delight in Eden as our daughter. We enjoy her. I love to kiss her sweet cheeks and rub her little baby feet and legs. There is real celebration over her life. And there is real joy in knowing that God is in this for our good, that he has ordained this for our good, and that all of the suffering that we (and Eden) endure will be for our present and eternal joy.


There is still a lot of joy in our home. At any given time, you may find the boys jumping into piles of pillows with their bellies out or having a dance party in the living room. Luke provides almost constant entertainment for all of us as he's learning new words and phrases daily and has stepped right into his role as "little brother". The twins are constantly asking him to chase them or wrestle them or jump on the trampoline with them. He's delighted to join in on whatever escapades they are involved in, and the three of them have a good little thing going. They adore their little sister and are completely unaware that there is anything different about her. 

And Eden really is doing well- especially when you consider that the neonatologist in the NICU recommended that we make a DNR (do no resuscitate) plan before leaving the hospital, and the nurses recommended that we learn CPR right away, and that our home health nurse advised that we know where the nearest hospital is before we left for a family vacation. Basically every doctor or specialist we've seen has made us feel like our baby is a ticking bomb, but from our view she is doing so, so good! 

So why title this grief and grace? Because we're up to our ears in both, and it's seeming like that may be our new reality, some days leaning a little more heavily to one side or the other. 

There is so much grace! That there is still tons of laughter and JOY in our home is grace, grace, grace! That Eden is doing so well is grace! That we now feel like it's no big deal to suction her or hook a tube to her belly to feed her is grace! That we function pretty well on relatively little sleep is grace! We have all that we need every day- grace upon grace. 

And yet there is real sorrow, too. 

Many times when I hook the tube to Eden's tiny belly, my heart hurts because it's not supposed to be this way. Or when she wakes screaming because her mouth is full of saliva and she's scared and doesn't know what to do. (I think she's learned that it's not good to swallow, so she pools the secretions when she sleeps and sometimes they become too much for her and it seems to scare her). It scares me too and it makes my heart hurt. Or sometimes when I wake up and hear her breathing become high pitched and rapid, and I wonder if this is going to be the time when she just stops breathing and I fly out of bed to check on her. She's been fine every time, but I still return to bed and pray that God will help me not to worry about that day but to trust that he will be sufficient for that day, whether it's soon or years from now. 

So how do I wrap this up? We're okay to live with this tension. It's okay to live with a seemingly paradoxical set of emotions regarding Eden's life and disability, sorrowing and also rejoicing. I know many people (ourselves included) would like to just hear that we're fine and then put a nice little bow on that package and move on. This trial just isn't like that. 

But we know this isn't the final chapter- we live with this tension now, but one day it will be all joy. One day Eden will be freed from a broken body and a broken world, and she'll live in a perfect body, perfectly enjoying her God. And as Don reminded me early on, we'll have all of eternity to enjoy her as our daughter with no sorrow or grief or sadness. Lord, haste the day. 
  

On Eden and Glory

I've wanted to post more and have lots of jumbled thoughts on grief, grace, disability, and living a new normal, but whenever I have some free time (haha!) my pillow beckons me and I don't get around to writing the things I want to remember. 

So today I'm posting something that Don wrote the day that Eden had her surgery. He was helping me think through how God is using her life and the good that is coming of it, even if it ends up being short or marked by suffering. I'm posting this today mainly because I needed to remember this today.

*******************************************

Earlier today while Eden was having surgery Sara asked me how Eden's life is giving God glory. I did a little writing to clarify my own thoughts on this, and I thought I'd share it with you all. 

We can't and never will never know all that God means to accomplish in and through Eden's life. We see things from one little angle. We have a limited perspective. God is infinite in wisdom; he sees the whole picture with perfect clarity. "In his sight all things are open and manifest, his knowledge is infinite" WCF. His wisdom sometimes appears mysterious to us because we only see a small slice of reality.  So we can't know all that God is accomplishing. But we can know a little bit about what he's doing. We can know that he's glorifying himself in the following ways.

1) "For you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sake he became poor, so that you by his poverty might become rich" (2 Cor. 8:9). Though he was rich, he became poor. This is the gospel. Sara and I are rich -- rich in health, rich in energy, rich in resources. Eden is poor. Our glad giving of our riches to care for the poor is a reflection of the gospel. That we didn't end Eden's life like the doctor wanted us to, but are instead giving of ourselves to care for her is a reflection of the very heart of Christ. God is glorified in this. The angels are watching this. 

2) Scripture tells us that when we serve others we should do so "as one who serves by the strength that God supplies--in order that in everything God may be glorified through Jesus Christ."  God has shown himself to be abundantly sufficient as we seek to care for Eden. "I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me" (Phil 4:12-13). The sufficiency, grace, comfort, and power that Sara and I have been given these past two weeks does not come from ourselves. It comes from God. In this he is glorified. 

3) Then God said, "Let us make man in our image, after our likeness" (Gen. 1:26). Eden has worth because she was made in the image of God. In stark contrast to the mindset of the world, Eden's worth does not increase or decrease based upon her ability to contribute or give back. Her worth is fixed because she is a "little god" -- made in the very image of God. It is from his worth that she derives her worth. Our love for this little one made in God's image honors the worth of God himself. It says something to the watching world about God's glory. God is glorified in this.

4) Prayers, compassion, gifts, visits, help, support, kindness have flowed to us from Christ's body, the church. Because of Eden's life, the beauty of the church has shined to the glory of God. God is honored and glorified by this. 

5) Eden's sufferings, which are causing all of this glory to go to God, will be abundantly rewarded on the final day. "For this light momentary affliction is preparing for us an eternal weight of glory far beyond all comparison" (2 Cor 4:17). If much glory is going to God as a result of one of his children's suffering, God will most certainly richly reward that suffering. Therefore, in that day, when God anoints Eden with immortality and everlasting beauty, God himself will be seen to be abundantly gracious and generous as he rewards Eden far far beyond what her suffering deserves. Her beauty is diminished here; her radiance will be the brighter there. "The sufferings of this present time are not worth comparing with the glory that is to be revealed to us" (Rom. 8:18). When we see the glory that God bestows upon Eden, it will result in the "praise of his glorious grace." He will be glorified.

4 Weeks and Home

I've had so much I've wanted to write about and never the time to do it, and now I have a few moments and my mind is virtually blank. 

So, a few things: Eden is 4 weeks old! How did that happen?! I've learned the feeding tube and have had to troubleshoot a few times and I feel pretty good about the whole thing. In fact, hooking her up to the feeding tube is one of the easiest things I do! I clean her g-tube site twice a day and so far, so good. I took her in yesterday because it looked infected, but thankfully it's not and the redness and discharge is normal. It should be pretty much healed in the next two weeks. Thankful for that! 

She was doing pretty good with her secretions until yesterday when I tried to do some swallow therapy with her. I'm supposed to use a syringe to put one little drop of breastmilk on her pacifier and listen for her to swallow, giving her the chance to practice swallowing with a very small amount. Yesterday, as I tried this at home for the first time alone, I accidentally squeezed out 2-3 drops of milk instead of one. (I was doing this one-handed while holding her sideways on the boppy pillow, holding her with one hand and holding out the pacifier and putting the drop on with the other hand.) Getting those extra drops in her mouth resulted in about a half hour of congestion and labored breathing. It was pretty scary. She has struggled a lot over the past 24 hours with her secretions and I've had to suction her often to help her clear her mouth; this is probably the hardest part of her care because it's when she is in the most distress and I just feel bad because she's uncomfortable and upset and I see her frailty more clearly.  

Other than that, she's a typical newborn. Her brothers love her and ask to hold her all the time. Luke has decided he wants to be the baby and wants to have all of her pacifiers. (Even though I tried to get him to take one as a baby and he refused! Little stinker!). Jacob is the most tender with her and would hold her for hours on end if he could. Josiah loves her as well, but is usually too busy to sit and hold her for any length of time. 

At the time of this picture, Jacob literally asked if I could get her a little closer to him! He loves her so much! 

Josiah's first response to Eden was to sniff a few times and say, "She smells like cheesey noodles!" 

Jacob really is a great help and I trust him with Eden because I know he would never hurt her and he's very careful with her (and if you know him, you know he is not normally a careful boy!). 

Things we're learning: There's a lot of grace in the command to not worry about tomorrow. That was actually one of the first things Don said to me after our 20 week ultrasound when they noticed the missing corpus callosum. The weight of Eden's care is exactly enough for one day and I can't possibly think about tomorrow let alone 2-3 weeks from now or a year from now. I'm getting about 4 hours of sleep a night and that's interrupted by 3 feeds and checking on her 20-30 times to see if she's handling her secretions ok. I can hear her high pitched breathing and the sound of her trying to spit and I just can't ignore that. Many times she's perfectly fine and is just working on clearing her mouth herself which is a very important skill for her to practice. During the night I often feel like I'm literally going to die- I'm so tired and it's so hard, but I wake up in the morning with new strength and usually feel just fine. Help always comes. 

A dear friend sent me an article related to this- here's an excerpt: "His command that we “not be anxious about tomorrow” is a great mercy to us. If we obey him, he will relieve us of a burden too heavy for us to carry. We lay aside the weight of tomorrow’s trouble by exercising two simple acts of faith: we receive and we cast. We receive from God his sufficient grace for today. And we cast our anxieties for tomorrow on God because he cares for us (1 Peter 5:7)." The full article can be found here: http://www.desiringgod.org/articles/lay-aside-the-weight-of-tomorrow-s-trouble 

The other thing we've been thinking about a lot is that joy comes from God. It doesn't come from getting loads of sleep, having healthy children, a big home, lots of money, or everything working out exactly as you hope it will. It comes from nearness to God and him giving you joy in lots of simple things, like watching your two year old coast on his balance bike, or watching your twins bounce on the trampoline, or sitting on the couch with your husband to celebrate your 13 year anniversary with chocolate covered pretzels after a long day. We did this last night and I'm sure had as much joy and good conversation as we would have at a great restaurant.  

Don has been the one to help me think through this and has been a constant source of encouragement and help to me and has been husband and father extraordinaire over these past weeks since Eden has arrived (He's always been a great help and encouragement but since Eden, he's taken on full care of the entire family- he gets our meals on the table, changes Luke's diapers, puts all the boys to bed at night, gets up with them early in the morning, bounces on the trampoline, reads stories, builds with Legos, and on and on. I only have care of Eden, which is probably light in comparison!). Last night as I lamented that we may not be able to get out for dates as much or take vacations or really enjoy a lot of freedom that other families may have, he reminded me of this truth (that joy comes from God) and said that we'll have as much joy as we ever did, and in some ways probably more. And that really has been our experience, despite a hard diagnosis, lack of sleep, scary times of trying to help the baby work out her congestion, and a daily routine that leaves little time to even answer the phone. We're not going to lack for anything and we won't miss out on anything either. Our lives are richer and fuller because of Eden- she brings out the best in us all! 

Sweet Pea tired after another appointment at the hospital. 

Little Peanut watching the lights while letting me type. (And in case you're wondering, she goes by lots of names right now: Peanut, Sweet Pea, Little Sweet, Cookie, Honey Girl and Girl- as in, "Hey, Girl"or "Come here, Girl"- my grandpa used to call me "Girl" and my dad does the same, and though it sounds like it would be cold, it's actually very affectionate and loving. 

And at the time of publishing this post, I do believe she may have smiled at me. It could have been a sleepy smile or passing gas, but I'll take it and say, "Thank you, Lord!" 

"Oh, taste and see that the LORD is good! Blessed (happy!) is the man who takes refuge in him!" Psalm 34:8