Let's talk about one of the most common health conditions associated with DS: heart defects.
According to the National Down Syndrome Society (ndss.org), about half of all people with DS have some sort of congenital heart defect. Some sources reported a higher number, even up to 65%.
When Eliyanah failed her newborn heart screening, this was our first indicator that our hunch about her having DS was correct. I remember the terrified and helpless feeling of not knowing if she would be ok. Would she survive? Would she need open heart surgery? Would she be on medication throughout her life? The questions just ran over and over in my mind. I have a photo that I am not yet ready to share with the world, of me with tiny Ely, tucked into my shirt, trying to get some skin on skin to help her regulate her body temperature, breathing, and heart rate while we waited to take her to the doctor. In the picture, I was a mess of tears. I did not know or understand what God was doing.
In that moment, someone knocked at our door to tell us a package had arrived on their doorstep by mistake. It was a rocking chair for Eliyanah. Someone had anonymously sent it to us (I still don't know who it was!) When the box was brought in, I looked at it and wondered if I would even get to use it. I must have voiced some of my fears outloud, because I remember Chloe saying, "Mom! The brand of the chair has the word 'angel' in it. It was sent by an angel to let us know that Ely is going to be ok!" Oh, the wisdom of my sweet girl. The beauty of her faith in that moment still brings tears to my eyes.
When we arrived at the doctor's office, I remember feeling like my mind was disconnected from my body. Part of me wanted to rescue her from all the poking and prodding, and the other part of me wanted to run away and hide from the reality of what we could be facing. What stood out to me is that they did not seem overly concerned about her. This was baffling to me. How could they be cracking jokes and acting like this is just another day? Couldn't they see that this was one of the worst days of my life?
The doctor ordered the ECG for the next day. One more day of not being sure what we were dealing with, but at least we could wait it out at home. I will never forget sitting there in a dark ultrasound room, holding my brand new baby while she slept and the technician scanned her heart for over an hour. I could not help but reflect on the irony of how joyful my other ultrasound experiences have been. And here I sat, trying to make sense of the images of her heart on the tiny screen next to me.
At some point, I accepted that she might need to have surgery. But looking at how fragile she seemed, with my maternal instincts in full gear, with adrenaline as the only energy I had to even be out of bed 3 days postpartum, I just prayed and prayed for her to be ok. For the strength to face whatever we needed to face. To be able to accept what He was calling us to.
A couple of days later, we got the ECG results. I could not make sense of the diagnosis. Without hesitation, I sent the results to a dear friend who understands how to read these reports. She immediately responded, "This is great news!" She went on to explain that Eliyanah had the two most common holes in her heart, that can happen to any typical child and almost always close on their own or remain open and asymptomatic. I couldn't believe my ears. Her heart was going to be ok? She might not need medical intervention? I still didn't know what this meant for her future, or if her heart would fully heal, but what I did know in that moment was the sweet feeling of relief. Of finally letting myself breathe just a little. Right after this, I got a call from Derrick. He had taken the kids to grocery shop and was now sitting on the side of the road with a flat tire. My response? Laughter. 😅 There was a time in my life where these things would cause frustration and stress. Now it just seemed so ridiculous to ever be sad again about a minor inconvenience.
In October of last year, when she was 5 months old, we were given the joyous news by a pediatric cardiologist that Eliyanah's heart was, in his words, "Normal". In fact, he also added, "Don't come back!" And we have gladly complied with that order. He explained that of the two holes, one had completely closed. And the other, while still open, was asymptomatic and common for even a typical person. He also looked me in the eyes and said with sincerity, "You DO realize how unlikely it is for a child with DS to have nothing wrong with their heart, right?" To which I tearfully nodded. I sure did know. He continued, "You have been blessed! And there are so many resources and opportunities for her to have success. Children with DS are able to be very much like their peers in many ways."
We walked out of that doctor's appointment beaming with joy. Praising our God all the way. Eliyanah's heart was healthy. Hallelujah!
I love reading. My kids are absolutely obsessed with reading. One of the things I love most is that the end of one chapter and the beginning of the next are always the most interesting and exciting parts. And that is where our family is at right now!
We just closed a 6-year chapter living in New Town/Plaza and serving with our church family there. They are wonderful. I can't describe fully just how amazing our time has been with them, but I will sum it up by saying that they are absolutely our family and that will never change, regardless of the distance.
I will be honest that I sensed for a while that this chapter was coming to a close, probably around the time that Eliyanah was born. God has been doing a lot in my heart and in all of us, and it seemed He was preparing us for something new. We had no idea exactly what that would be, though.
When the opportunity to apply for a pastoral position first was presented to Derrick, we were hesitant. Not because he doesn't want to serve in this capacity. In fact, we had been praying about this for a long time, and very much wanted to. To be honest, we were wanting to make sure that we didn't get ahead of God, and were trying to remain content in our circumstances. He had a job that paid the bills, we had a place to live, and we were starting to get to know our community a little better. We were doing ok on the surface. But deep down, oh we both longed for more. More of "doing life together" with people in the church and in our neighborhood. More of living out our faith. More opportunities to build relationships for both me and the kids. A better setup for Eliyanah when she needs medical care or therapy that doesn't involve long drives. I have felt like I am missing something for a long time. Winters are hard, especially, because I could easily go a week or more without even speaking with another person besides Derrick and the kids. I knew I couldn't continue in that way of life for the long haul. Not that there's anything wrong with it, but at times it was not good for my mental health, especially since having Ely. I need a network, a support system, and I want to BE that support system for others as well. I was also exhausted from all the traveling. We enjoyed going to Minot, but we were there 3 times a week, even during the winter. It just was starting to feel like too much.
Still, Derrick applied for the position with the attitude that if this wasn't meant to be, it was ok. We would make the most of wherever He has us. As long as we are following what God wants for us, that is all we wanted. It is how I felt, too.
The process went smoothly and before we knew it, we were at the church meeting everyone! I will never forget how daunting and overwhelming that seemed. It's hard not to worry about what people think of you when you are literally there for the purpose of people deciding what they think of you. ;) But honestly, it was beautiful. Easy. Comfortable. Real community. We sensed that this was what God was calling us to, but didn't want to talk about it as though it were a definite thing until it was official. We wanted to be sure to let God lead every step of the way.
Derrick got the official call on June 30th. He accepted. Now we could start making plans!
July 1st, we hit the ground running. Projects around the house, and even some packing. Keep in mind, we were not ready to list the house yet, we did not have a clue where we'd live, or how long all of this would take. We just started wrapping things up little by little. The hardest part of this process was telling all our dear friends who we have grown close to over the years. It was a bittersweet time, but also a time of experiencing confirmation that this was truly God's plan and we were ready to follow His calling.
We listed the house for sale on July 18th. We had an offer on July 20th. It went under contract a week later and we are just waiting now on the appraisal, which won't happen until early September. (That's how hard it is to get an appraiser to come out there.) Prayers appreciated that this last hurdle before closing will go smoothly!
On July 24th, we found an apartment. Less than a week after listing the house, which I know sounds absolutely crazy. But this is how God works! When He moves, He doesn't waste any time. By the 31st, we had checked in and officially had an address in Dickinson. Praise the Lord!
In the two weeks that followed, it was a whirlwind of packing, leading VBS in New Town, saying goodbyes, selling things, and finishing up their summer Bible Bee study in Minot with our dear friends there.
We got here on August 15th, and it's been amazing, and I'll be honest, exhausting as well. We have met many wonderful, generous, thoughtful people. Many of those people moved us out of our house and into a 2nd floor apartment. No small feat, but with so many people, it went incredibly fast. It was such a blessing for Derrick to not have to do it almost completely by himself, which is what happened with our last move! We have settled in (mostly) and will still have boxes to unpack for a while, but it feels like home, and that's all that matters to us. We have done the apartment thing before, and I truly enjoy it! I have often missed those days in New Hampshire. It may not be for long, as we will be looking at houses once our house is officially sold. But either way, I will enjoy this little "break" from all the responsibilities that come with owning property!
Derrick started right away on Monday this week, and he is excited to dive in. We are so thrilled to be a part of this community of believers and to start building relationships. It's just the beginning, but we are looking forward to seeing what God will do in and through us, and how He will cause us to grow in our faith and in our relationships with Him and with each other as a family!
To God be the glory for this new chapter. We have LOVED the last one, and have cherished the time He gave us to be a part of the ministry in New Town. We know that those wonderful people are still our family, and are praying for us, as we pray for them and the ministry there. And as we turn the pages, we are eagerly anticipating the story that is about to unfold here in Dickinson and at EBC. We know that it's going to be exciting, because when God is the author, it is certainly never boring!
It was Wednesday afternoon. We were getting loaded up to leave for New Town to bring the kids to their practice for the FLL State Competition. It was a gorgeous, sunny day, and they were excited to work on some new ideas and improve on how they performed at the qualifier.
I put the key in the ignition....nothing. Tried again....nothing. "Well, guys, I guess this isn't happening." I put my head on the steering wheel and let the tears fall. My desperate prayer was more of a complaint. "Why is there always so much stacked up against us, God? Why is life so HARD?"
Let me back up a week or so. After weeks of not really being around people at all, we finally got out of the house and enjoyed some time with people over the weekend. Two days later, we were dealing with yet another bug in the house. Elijah was miserably sick with a stomach bug. This is the fourth illness we have had in the house since Thanksgiving, and all of them have been back-to-back. I was hoping and praying it was just short-lived, but by Friday, we were still trying to decide if he should even attend the Lego Robotics competition. He just wasn't back to himself. Everyone else had experienced mild symptoms and it was still life as usual. But he wasn't bouncing back. I agonized over it, but we finally decided he should go. I was going to stay home with Eliyanah and drive over the next day, just to keep from having to pack up ALL her equipment, supplements, etc. Friday night, Elijah was still sick at the hotel. But Saturday morning, had a miraculous recovery and was fine all day. I, however, started feeling extra exhausted and not my best. I decided, reluctantly, that I needed to stay home and not try to drive over there by myself. It was a heart breaking decision, since I have been coaching for the past few years and did not want to miss anything! I was thrilled that they did so well, but felt defeated as a mom that I couldn't be there for them.
Saturday night, Esther woke up shaking. I thought it was just maybe she got jolted out of a sound sleep, but instinct told me she was probably coming down with a fever. I realized when we put her back to bed that I was actually feeling shaky, too. By Sunday morning, we realized that both Esther and I were coming down with what Elijah had. I'm so glad he was back to himself, because we needed his energy to help with all the things around the house! Oh, and did I mention Sunday was the day we needed to pick up the puppy? Yep.
Derrick left with the boys, and Chloe stayed home to take care of me, Esther, and Eliyanah. She is such an amazing young woman. Sunday night, I was as sick as ever, so we had new puppy, sick mommy, and Derrick trying to take care of all of the things, including feeding the healthy ones. It was extreme chaos and I wondered if maybe we had made the wrong decision to add another pet to our already stressful and overwhelming life.
Monday, though Esther was much better, I turned out to be very weak and exhausted. Derrick stayed home because I could barely even get out of bed, let alone take care of Ely. We thought I was on the mend, but we were wrong. By Monday night, I was much worse and ended up being awake all night long. I truly thought I might end up needing to go to the hospital. Nursing a baby and losing fluids, all while being unable to eat, was taking its toll. Derrick stayed up all night with me, trying to figure out how to help. We prayed. We pleaded with God to heal my body. It was a long, long night. By God's great mercy, Ely slept through the night for the first time in a while, which gave me a break from nursing. And shortly before the kids got up on Tuesday morning, I finally got to a point where I could keep water down and sleep. Again, Derrick had to stay home because I was even weaker than before and could not stay awake.
Tuesday was a day of healing. God had answered our prayers and I was getting hydrated and building strength. All while being able to still feed Ely enough to keep her hydrated. This is nothing short of miraculous, as sick as I had been all night long. Finally, Derrick could go back to work!
Wednesday morning, I was still so weak and exhausted, but was determined to get out of the house. The kids needed me to get them to their practice. Honestly, I wasn't well enough and should have been in bed, but Derrick needs the little sick time he has left after all the struggles we have had over the past year and I needed to tough it out. I prayed. I got protein into me and lots of water. The kids did everything to pack up the van, all while taking care of the dog completely on their own. They have been AMAZING with this! I am so impressed with their ability to step up. They know I don't have time to take care of him, so they have done all the potty training, all the walking, all the feeding. They were definitely ready for this! It was for sure a good decision. He is therapeutic for all seven of us and has adapted really well to our routine.
We were a few minutes late, but were finally ready to go. I was even finally going to bring some work to the church to catch up on bookkeeping that I am so far behind on thanks to....well, everything! And then....Click. Click. Nothing.
Yep. Back to the present.
The kids sat there in silence with me, listening to me cry. I heard Esther sniffle and I could feel her shaking a little while she was hugging me. She was crying, too. Chloe was rubbing my shoulder, and Judah was looking on sweetly. I went back to my prayer, "Why can't we ever just have a break? Why has life been so impossible for over a year now? Not one moment to breathe!"
Elijah broke the silence.
"He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the LORD, "My refuge and my fortress, my God, in whom I trust." For he will deliver you from the snare of the fowler and from the deadly pestilence. He will cover you with his pinions, and under his wings you will find refuge; his faithfulness is a shield and buckler. You will not fear the terror of the night, nor the arrow that flies by day, nor the pestilence that stalks in darkness, nor the destruction that wastes at noonday."
He had found Derrick's Bible tucked into the side pocket of the door and had randomly opened it. It fell on Psalm 91, and he said it just seemed to fit, so he started reading it. He didn't even know it's one of my favorite Psalms. Of course I cried more tears. And God's voice broke through all the noise my heart and said, "Don't miss this. I want you to see this. Yes there's struggle, sickness, missed plans, broken vehicles. But guess what. Right now your 10-year-old son is consoling you by reading Scripture. Is there anything better than that, in the whole world? Does anything else matter more than the spiritual health of your children?"
Of course, He already knew that I knew the answer. Given the choice, I will always choose eternal value over temporary. My children know Jesus. They love Him. They have experienced His goodness. They have had to wrestle with a lot of doubt, grief, fear, and hurt over many things over the past year and a half, as we were already wrestling with some painful things that were out of our control even before Eliyanah was born. It has matured them in ways I never imagined possible. They are strong. They have a fierce faith and a deep understanding of God's Word. They are a force to be reckoned with against the Enemy. They are God's Kids, and it brings me peace and joy that I can't even describe.
"Well, I guess God wants us home today!" I said, letting go of my sadness and deciding to embrace our circumstances. Let's go for a walk, it's gorgeous outside. And it really was. It was over 50 degrees and sunny! We all went for a walk together (a slow one, since I was still recovering), and just talked about all sorts of things and laughed together. I forgot about the van. I honestly couldn't have cared less about it at that moment. I knew we'd figure it out.
Derrick came home and attempted to jump start the van, just to rule out the simple solution of the battery needing a charge. It would not even turn over after trying for a while, so he gave up and we decided to call around to mechanics in the morning. Yesterday, I began calling around and our local shop told me it would not be fixed until the end of next week. I decided to call around in Minot and quickly learned that it would be even longer than that. So I started the tow truck claim and continued on with our day. A few minutes later I got a call from who I believe is quite possibly an angel sent from heaven.
I had shed a few tears that morning thinking about how it used to be when we lived near family and had car troubles. We would have not had to get a tow truck and find a mechanic, because usually Derrick's dad would come by and help him figure it out and they would go get the parts and fix it together. That seems like a lifetime ago. However, in these years since we have lived without our families nearby, I have learned a greater and deeper dependence on our great and loving God. He is our Father. He cares, He understands, and He knows our needs before we do. I have seen Him provide for us time and time again when we have had no one to call on. He has increased my faith and proven to me that I need only to rest in Him and trust that He is good and He has a perfect plan.
When the tow truck driver (I wish I knew his name!) showed up, he immediately asked me what was wrong with it and tried to start it. He said, "Oh it's just the battery." Just like that. I told him that we had tried to jump it, but he said that he was going to try anyway. He grabbed his fancy charger box thing (yeah I don't know much about this stuff) and hooked it up. The van started instantly. I'm standing there in disbelief and he's chuckling. Normally I'd be embarrassed and feeling dumb, but truthfully, I didn't even care that it was our mistake. I have been completely overwhelmed with life, and so has Derrick. We are allowed to not be on top of our game in every area! 😅 What we didn't realize is that the battery was SO dead, Derrick's little car plus our less than fancy jumper cables were just not enough to get it going. Because I had been sick, we had not driven the van in nearly a week. I discovered that two interior lights had been left on and the doors had been unlocked. Rookie (or kid) mistakes, I know. But again, I don't really care. Laugh at us all you want, I am just happy our van is running!
What really struck me about this man was his kindness. I love all my North Dakotan friends, so please don't get me wrong if you are one (because this is also something I love about midwesterners), but some of y'all can be kind of blunt at times, and it's hard for this sensitive, exhausted, overwhelmed New Englander to always know how to handle it. lol. He wasn't like that at all. He gently explained to me why our attempt at jumping it didn't work and patiently waited while I figured out if I still wanted him to tow it. He told me that he's worked with cars for 40+ years and that he likes to take the time to educate people. I thought back to my sadness from earlier that day and realized God had sent me the exact right person. Someone who cared, was gentle, smiled, listened, and didn't judge me for not knowing better. He didn't send me a family member or friend, He did something even better. He sent me a stranger. So that I would know without a doubt this was all God. When he left, I teared up and thank him and told him how we had been praying for a simple solution. He just grinned, shook my hand, and said he was happy to help.
(For all of you smart mechanically-minded people, yes I drove it down to the shop while it was still running to get the battery load-tested and the alternator tested, too. It was all perfectly fine! Shut it off and started it again, left it running for a LONG time, and started it again a few times later just to be sure. We are still good!)
Now here I am, at the end of the week, in big time reflection mode. The question still swirls in my mind occasionally. "Why IS God allowing one struggle after another in our family right now?" I don't know the full answer, maybe I never will. It seems like things have just been HARD since August of 2022 when I found out I was pregnant with Eliyanah. Sickness, major car troubles, terrible weather, no heat during extreme cold, and this was all before she was born and we knew that our life was starting a brand new chapter we never saw coming. Since then, it's been recovery, processing, doctors, therapy, and so many questions about the future. OH, and also car troubles, sickness, and extreme cold (we had heat this time, though! lol). I could wallow in this land of self-pity where it's all about me and how hard or easy my life is. But what is the point in that? I think we all have a tendency to want to do that when things aren't going the way we would like, and I get it. Sometimes it does seem unfair. Sometimes we look around us and it feels like everyone is having an easier time than we are. We all like to be comfortable and truthfully, I have not been comfortable for a long time. With this in mind, I return to Psalm 91:
"Because he holds fast to me in love, I will deliver him; I will protect him, because he knows my name. When he calls to me, I will answer him; I will be with him in trouble; I will rescue him..." (vs. 14-15a)
The answer to my question is not to look at my circumstances, but to keep my eyes fixed on Jesus. To keep holding on to Him and not letting go. What is more important. A comfortable life, or a life of growing closer to the God who made us and loves us? What will matter at the end of our lives? These are hard questions, but the only ones that matter. I once heard a pastor say, and I am paraphrasing here, but basically, imagine you go to church and Jesus is there. He gives you one of two choices. You can choose an easy and carefree life, but in the end, you will not be close to Him or really know Him at all. OR, you can choose the pain, the suffering, the struggle, and through it all, you will be rewarded with a deeper relationship than you could have ever experienced otherwise. You will know Him in ways you never thought possible. You will have strong faith and trust and know He is with you every step of the way.
I used to think that was a hard choice. I don't anymore. I want to be close to my Father in heaven. I want to rely on Him to get me through every moment, every second of the day. I want to know Him as well as I possibly can this side of heaven. And as I've walked a road I never expected to walk, I have found a million little mercies and blessings along the way. It's like a rocky, thorny path surrounded by beautiful, sweet-smelling flowers, refreshing streams, thick green grass to rest in, and fruit trees and berries to your heart's content. This is because Someone already walked this road before us. He carried the weight of this world on his shoulders so that it wouldn't crush us. We still have to live in it, but we get to experience the joy of knowing we are not alone. We are loved, cared for, and every single one of our needs are met. Nothing is a surprise to Him. He makes sure we are provided for, so that we can rest and even enjoy the journey, no matter how hard it gets. And, really, what would a good adventure be without struggle? Pretty boring, I'd say.
I will choose this every day over an easy life. Always.
I'll leave you with my new life anthem. What is even more special about it is that Rend Collective played this song when we saw them in August of 2022, a week before I found out I was pregnant. It was a new song to me, but I had no idea the meaning it was going to hold in my life.
Lamentations 3:21-24 - "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. 'The LORD is my portion," says my soul, "therefore I will hope in him."
I want to take a quick pause in the story to mention some of the many mercies of God that we experienced throughout this time. I think part of what makes God so good is that even in the suffering and hardship, He gives us little blessings that make things so much more bearable. I found so many, and I have probably forgotten some by now, but I think it is so important to share them because we really do have a loving, kind, and gracious God!
1) We believe it was a blessing that Eliyanah was sent to Bismarck after Minot turned us away. They have a well established PICU with highly trained staff. She was in excellent hands!
2) Shortly after Derrick arrived at the hospital, two dear friends from our church family showed up! They brought a little gift for Ely and just sat with us. It was a beautiful picture of how the body of Christ works. We visited for a couple hours and they just spent those first moments in the hospital by our sides. It was such a comfort. They prayed over us before leaving. It was a sacrifice they made to support us and it meant so much!
3) The first Respiratory Therapist we had was a kind and gentle lady named Medgy. She told me that evening that she had lots of children, too, all grown up. She encouraged me to trust in God, to remember His promises that He is with us every step of the way. She was very obviously a woman of strong faith and I honestly believe she was praying over Eliyanah when she did her CPT therapy. I can't prove it, but it's just a feeling I have. :)
4) Because I am a nursing mom, the hospital fed me whatever meals I wanted, for free. I could order anytime I wanted and they brought it right to me. It was a huge blessing to be able to eat without needing to go anywhere!
5) Derrick and I realized this was the most alone time we have had probably since Chloe was a baby. We have not had even so much as a date in over 3 years, so 5 days with just Eliyanah was a time of reconnecting and even resting once we knew she was getting better. We knew our children were in GREAT hands and we had complete peace that they were well taken care of, physically, emotionally, and spiritually!
6) The prayers! We had so many people reach out to us from all over the country who were praying. Entire churches, even people who did not know us where praying. It was extremely humbling and overwhelming, in the best way possible.
Back to our story now....
Wednesday was a GOOD day. Eliyanah got officially downgraded to intermediate care. No more PICU! Brooke had been off Tuesday, but when she came in Wednesday, she was thrilled at how much better she looked! We also had the same RT we had when we got to the ER. He hadn't seen her since Sunday and he was also excited to see her looking so well. They switched her to regular oxygen before the kids came to visit. It was a little less restrictive and we didn't have to keep her so still. The kids were greeted by the nurse and by the Child Life specialist who explained the tubes and wires and put them at ease. They got to eat lunch with us and just have some family time. The hospital gave them activity bags and let them borrow a game to play. I think they thoroughly enjoyed their visit. Mostly, we were just so happy to see each other again. I have never been away from my children longer than 2 days! And we have never BOTH been away from them more than one night. It was just such a relief to be able to hug them and love on them again.
The rest of the day continued just to keep on improving. They scaled back Ely's albuterol treatments to every 4 hours, and cancelled CPT. This was huge! It meant she no longer needed help getting the fluid out of her lungs. We were even given a possible release day of Friday, if all went well! But of course, one more test of faith, just for good measure. ;)
Wednesday night, we were assigned a different nurse we had never met before. She was not PICU trained, and while she was pleasant and attentive, she did not seem overly comfortable with the oxygen weaning process. They were supposed to be slowly weaning her overnight by 1L every 2 hours. She was at 6L when Brooke left, at 5L at 10 pm, and was due to be switched to 4L at midnight. The nurse came and left, and I dozed in between while the tube feeding happened, which took about an hour or so. By 1:30 am, I checked the oxygen and it still said 5L. When the RT came in to give her albuterol, I asked about this and she also did not seem overly comfortable with weaning. All this to say, she was still at 5L by the time shift change happened. I was so discouraged. I knew that I would get to nurse her again as soon as we were at zero oxygen. At this rate, it was going to be many more hours! Or so I thought anyway. It was just another moment where I had to release this to the Lord and trust that His timing is perfect, and that's what I did. I realized that maybe we were just still walking through the Red Sea, and just hadn't reached the other side yet. I knew that it could be a lot longer, but I needed to trust and keep walking. I braced myself to be patient for even longer, possibly much longer. Shortly after this, Eliyanah was resting on me and it was time for the new doctor to visit. Right before she stepped into the room, Brooke poked her head in and said, "We have some good news coming!"
I want to back up to add that the doctors were really big on making sure she pooped (sorry for the TMI, but this is parent life) before she could leave. We asked them to give more time before giving her anything like Miralax (I am not a fan of this, especially for a baby with DS). Eliyanah has a really slow digestion and it can sometimes be up to a week waiting for her to go. They heard us out and waited, but I knew it would be on the checklist of things that needed to happen before releasing her. About 2 seconds before the doctor walked in, she very happily filled her diaper! lol. This was so shocking to me, because it almost never happens that easily for her. When they came in, I announced the good news which the nurse then also happily announced to the doctor. She then told us that this was the exact thing the doctor had just asked about before they opened the door! Miracles happen in all sorts of ways, and this was definitely one of them! Such perfect timing. The doctor then gave me some of the best news I think I have ever heard in my life. "We are going to zero oxygen, and as soon as this tube feeding is finished, it's breastfeed on demand. If she sleeps tonight well with no oxygen, she's discharged tomorrow." Just like that! I burst into tears, really, REALLY happy tears. The night that I thought had set us back actually turned out to be no big deal at all. She was better and they were ready to move her out of there. Not long afterwards, the kids were supposed to be coming for a visit again. Brooke really wanted to get her unhooked from everything before they arrived. Derrick had stepped out to grab something, so she decided it would be a fun surprise for him to have Ely free when he got back! And that's what we did. In a matter of 5 minutes, she had tape, wires, and tubes all off of her. The only thing left was the IV. She said, "you can nurse her anytime you want, even if you want to do it RIGHT NOW". lol. She didn't have to tell me twice! I had been so worried she would forget how to eat. That fear was soon a distant memory. She did perfectly fine with eating and pretty much did not leave my arms for the rest of the day. It was one of the most joyful moments of my life!
The kids came back for another visit and were overjoyed to see Eliyanah looking more like herself. They all ran to her (I was walking with her around the room, such an amazing feeling!), and said, "Can I hold her?" They were so excited! It was one of the most joyful things I've ever experienced as a parent. The nurse came in and asked the kids to "help" her get rid of the IV. They all stood around as the last bit of medical intervention literally disappeared before our eyes with the help of what she called "magic spray" that made the tape disappear! From that point on, she felt like ours again. They were in and out to check on her, but a LOT less often. Derrick took the kids to go do something fun, and I rested with the baby. That evening was joyful. It was the last night we would have to be apart from the kids. She slept perfectly all night, with no oxygen trouble or lung congestion! Praise God! The next morning, the discharge orders came earlier than we thought. We packed up and got OUT of there!
I have so much more I could share about all that God showed me through this experience. I will try to summarize with just a few major things.
First of all, we learned so much in the hospital. We learned how to better take care of her and how to watch for early signs of respiratory distress. We also learned how to help her and hopefully avoid that kind of emergency, should she get that sick again. I think this time was invaluable. Things were explained to us so well and we became so familiar with the things they were doing and why. We are better prepared and equipped to help her in the future. I would love to be able to avoid all of that medical intervention if we can help it!
On that note, many of you know I am not one to typically use conventional medicine. When Eliyanah was born I had to reconcile that with what I knew about Down Syndrome. I knew it was possible that I would have to release that to the Lord. Like I said before, I have always stated that there is a proper place for conventional medicine. She is more likely to need some of those things. And I am grateful that they exist. I am also grateful that with the medications they did give, she did not experience really any noticeable side effects. This was a concern of mine, as even the doctors don't like to give all this stuff to babies if they can help it. But she tolerated them well and was off them as soon as possible. I also believe that all of the non-conventional things we do for her health on a daily basis are some of the reasons why she is so strong and why she recovered so quickly. Her pediatrician told us that her recovery is clinically much more like a typical child. And I am certain that it is because she's so healthy. Praise God, again, for that! We give Him all the glory!
Another takeaway, and this one is a bit hard for me to talk about, but here goes. Many of you know I was pretty devastated when Eliyanah was born. And honestly when I see posts or read articles about parents who are thrilled to have a child with DS, I struggle with guilt. I did not feel thrilled. I was heartbroken. I love my child to the moon and back, and she is really nothing like I thought she would be when I found out. God has been merciful to make this a lot easier on my heart than I had feared. But I was definitely not excited when she was born. It was a very difficult several months. I really did not start to emerge from the fog until she was about 6 months. I cried a LOT. I was depressed. I didn't feel that people saw or understood what I was feeling. Maybe people just thought it wasn't a big deal and eventually I would see that for myself. Maybe they were giving me space. But it felt as though most people forgot about what I was going through and just moved on with their lives, while mine was at a standstill.
My point in saying all of that is that this is no longer how I feel. I am head over heels in love with our little angel baby, as Esther calls her. She is quite possibly the best thing that has ever happened to all of us. We adore her to pieces, and she makes our hearts soar. Not that there isn't pain, and difficulty, and exhaustion, but there is so much reward in all of the hardship. Still, I wish I could go back to that first day. When I first learned that she has DS, and could smile and be grateful. Just snuggle her and love her and not worry about her future. Just gush over her and beam about the fact that she's MINE. I couldn't do that then, as much as I wish I could have. But you know what? God is so amazing! So much of our time in the hospital felt like labor. Waiting and waiting, an agonizing kind of wait. Time moving in a weird, sped up but also slowed down way. Exhaustion. All of these things that felt like having a baby. And then, after all that pain, there was so much overwhelming JOY. We were going to bring her home. She was our sweet, precious baby. The doctors and nurses were smiling and congratulating us. We were all smiling. There was recovery and healing and REST. I got to show her off and then pack her up and take her HOME. There was so much redemption in it all. God gave me do over. We don't get those often in life, hardly at all. But in that hospital, after some of the scariest moments I have ever experienced, God gave me a chance to relive the past with a different outcome. And wow, did I ever embrace it! I LOVE my girl so much! I am so proud of who she is and who God made her to be. She is stunningly strong, beautiful, brave, and determined. I cannot wait to see what her very bright future is going to look like! I think we are in for quite the adventure! And I'm here for it!!
I will close with this. We never know what is around the corner. But wouldn't it be great to just stop fearing the worst and just to trust and rest in the fact that God knows what is coming and He is already preparing us for it? I will tell you that this experience was one of the worst of my life. And you know what? It was also, by far, one of the BEST experiences of my life. I can't explain it, except to say that I knew God's goodness and love in a new way. I saw Him work miracles and renew my faith. He took care of my baby, my other children, my husband, and myself. I didn't have to do anything, just rest in Him. I didn't need to be in control in order for things to work out for good. I just need to let Him be in control. I pray that this encourages you all. Many of you are facing extremely difficult circumstances. You can fight against them and become overwhelmed and discouraged by the struggle, or you can see God's hand in it all. You can hold on to Him and let Him carry you through. He will not only walk with you, He will bring you closer to Himself in ways you could never have possibly imagined before. He will give your life purpose and meaning, and direction. Life may be easier without trials, but I can say from experience that life with hardship, when following Jesus, is a lot more fulfilling! I have never felt more alive than I have in the last year. I hope and pray this for you all as well, especially as you walk into a new year, not knowing what is ahead. Trust in the One who does know. "He who began a good work in you will be faithful to complete it!"
I want to make sure I mention that up until the end of my last post, we were getting comments from her doctor and nurses about how strong Eliyanah is for a baby with Trisomy 21. They were following the protocol they would follow for a baby with low muscle tone, but she was quickly proving to them that she was anything but weak. Monday night was the last day her first doctor would be there. He was going to be off for the rest of the week and the regular head PICU doctor was going to be taking over. As Monday afternoon and evening wore on, she started showing signs of responding to the albuterol and CPT treatments. She was coughing more, breathing a little better, and beginning to progress in the right direction. The voices of the nurses and respiratory therapists started to sound a little less serious. They started to smile a bit more. When the doctor was getting ready to leave, he stopped me outside the room with a smile and said, "I'm really happy with her progress." I will never forget those words! What a relief! She was not completely out of the woods, but her body was finally beginning to clear out the fluid from her lungs and she was turning the corner a bit. I felt hope and for the first time since we had gotten there, I felt like I could take a deep breath.
The doctor really did try to work with us. He knew how badly I wanted to at least start getting milk back into her through the feeding tube. She had been crying for at least a solid hour that afternoon because she was so hungry. I can't tell you how many people asked us if she takes a pacifier. They tried giving her one and it just made her even more angry! I did feel that he really did listen and try to accommodate, or at the very least, explain his thought process to us. He made the call to switch her to C-Pap to see how she would do, and if all went well, she would be able to start NG feeds the next day. It was not as fast as I wanted it to be, but throughout this whole experience, I knew I just needed to accept that this was the path we were on and not fight for my own way. I also wanted her on the quickest possible trajectory towards going home, and I didn't see how showing impatience and frustration would help that at all. So we took it as a victory, she was heading towards at least having a full belly again!
We had the same nurses for the first three nights. One of them is pregnant with a little girl and due in March. She seemed to connect with Eliyanah better than any other nurse there. When I could not calm her down, she held her for me and helped her settle. We had a great conversation and she told me how she just does not seem like a baby with Down Syndrome at all. She's so strong, it really just amazed and impressed everyone! It helped to know she was being cared for by a nurse who thought she was so precious. That night, she slept really well. I think Derrick was even able to put her down and lay down. This time, they had a courtesy room for us that was way down the hall from her. I just couldn't bear to sleep that far away, so I ended up in the recliner in her room for most of the night. At some point, I did finally switch with Derrick and get a few hours of sleep. During that time, Eliyanah had woken up and finally peed (they were monitoring this closely because they still were not giving her much for fluids). It was so much that it leaked through and she needed to have her IV tube retaped (they had splinted her foot and taped it halfway up her leg just to make sure she didn't pull it out since it was so hard to get it in). This was quite an ordeal, but I guess I never actually heard any of this, because I was sleeping so far away.
Tuesday morning rounds came, and with them, our new doctor. I was nervous to meet her, because I had been told she's even more cautious than our previous doctor had been, and I just wanted to get milk into my baby. When she came in, I was so encouraged. She was immediately impressed with Eliyanah's muscle tone and how well she was responding to treatment. It was time to start tube feedings! Finally, my baby wasn't hungry anymore. She couldn't have the comfort she wanted, but it was a relief to know she was moving yet another step in the right direction. As the day went on Tuesday, she started to show signs of healing. Less fluid in her lungs, more productive coughing, and just a little bit more like herself. Before the end of the day, we were told that they would be turning down the Fi02 gradually from 50% to 40%, and if she could get to 40% by morning, they would switch her to high flow....which is just the regular oxygen! They also moved us next door, to a room that was not technically the PICU, because they planned to change her status the next day. Our baby was getting better, and now we could all stay in the same room!
I remember feeling a lot of peace Tuesday night as Derrick laid her down in the crib and she slept peacefully. We expected a rather easy night. she was doing better, getting milk, and resting comfortably. We felt like we could finally relax a bit. But God had one more lesson for me and one more test of my faith and resolve.
Sometime around 1 am, I woke up to the nurses coming in to do a tube feeding. They didn't realize I was awake, but I was listening as they checked the tube to make sure it was still placed properly. For those of you who don't know, this means they would squeeze a tiny bit of air through the tube and listen to her stomach with a stethoscope to make sure they could hear the air. I had watched them do this several times, but this time I heard, "I don't hear it." Uh-oh. I hoped and prayed that it was just a mistake. They tried again. Nothing. They called another nurse in for a 3rd ear. She didn't hear it either. By this time I was standing up and asking what was going on. The one who seemed especially fond of Ely tried to sound confident, but she was upset. She felt terrible that she thought she had woken us up to 3 nurses standing over the crib. She said, "I'm so sorry, but we can't do her feeding right now. If the tube is in the wrong place, it would be dangerous. The doctor is already on her way in to see another patient, so we will ask her what she wants us to do. She may want us to replace the tube, which means retaping everything and doing another chest xray to check for placement." My heart sank. I didn't think I could bear watching her go through that again. It was bad enough witnessing all of that when we arrived! I walked out a few minutes later to discuss it with her some more, and she had tears in her eyes. She was so frustrated. It didn't make the problem go away, but it did ease my sadness to know that she was sharing the same feelings. She didn't want to wake her up and do a whole bunch more invasive measures anymore than we wanted her to. I chatted with them some more, and asked if they could ask the doctor if we could just take the feeding tube out since we were so close to the oxygen weaning goal, and so close to me just feeding her again. I was hoping maybe she'd just speed up the process a bit so we didn't have to put her through all this again. Keep in mind, my sweet girl was sleeping away so peacefully, completely unaware that they were about to put her through so much stress yet again. The nurses were supportive, but were at the mercy of whatever the doctor decided. I went back to the room and just sat with Derrick and all I could think of was Israel and the Red Sea. There was an enemy pursuing them and they were surrounded. Then God opened up a way of escape. I prayed hard over her, that God would give a way of escape and that she wouldn't need to go through this again. But we both just asked God to do whatever is best for her, not our will, but His be done. I truly felt His peace wash over me. No matter what happened, she would be ok and it would be for the best. We laid down and fell asleep. I don't know how long we were sleeping for, but I woke to the nurse gently shaking me and telling me how sorry she was. The doctor had ordered the NG tube to be replaced. They had to get her up and do it right at that moment. I was shattered, but rather than stay in the room knowing I could do nothing to make it easier, we decided to take a walk down to the lobby and have a few moments alone. I couldn't bear to hear her screaming again. As we walked down the stairs, I asked Derrick if she would be traumatized by this. He reminded me that kids are so resilient. We might be a bit traumatized as her parents, but she would not be in the long term. I knew he was right. A dear friend who taught me so much about brain development told me that kids' brains actually grow more when they experience hardship. Not that we want them to struggle, in fact I think sometimes I want to wrap my kids in blankets and protect them from all potential harm! But God has created us to be able to power through adversity and to be stronger and better because of it. So while it broke my heart, I knew that she would be ok. In the Red Sea scenario, the only way out was through. We had to walk through, and so did she.
When we got to the lobby, the most beautiful thing awaited us. Worship music was playing over the sound system. Just gentle, relaxing, praises to our great God. It was just us and the night security. We sat on a couch and it was just a really sweet moment of rest. Resting in our Savior, together, as one unit. Both so sad, but also both knowing that God loves Eliyanah even more than we ever could. That He sees our hurt and also was making her well. I was heartbroken, and also felt like I was being ministered to in that moment. After about 20 minutes, we went back upstairs. They were all done and Eliyanah was calm. In fact, one of the nurses was pulling her up to a sitting position and remarked, "You are just the strongest baby in the world!" She got another feeding right away and went quickly back to sleep. She still made it to the 40% oxygen goal by morning. There were no real setbacks, and all was well. We learned that the NG tube was in the right place, but completely clogged with mucus. I also realized when she woke up later that morning, that milk was exactly what she needed. It was good for them to continue with tube feedings throughout the night. For those of you who may not know, mother's milk is an incredible miracle. Not only does it give her all the nutrients she needs, along with fat, carbs, protein, etc, but it also has this incredible ability to adapt based on her needs. When I kiss her, her skin tells my brain what it needs, and my body will make exactly the right composition, including the exact antibodies she needs to fight illness. I was pushing hard for her to get milk, not just because she was hungry, but because I knew it would literally speed up the healing process. And boy did it ever! When we saw her in the daylight, her normal color was back. She was pink again! The fluid in her face had gone down and she looked so much more comfortable and happy. God did just what she needed. I was so glad that we had trusted Him. I have never once regretted trusting in Him, and I am sure I never will!
I can't think of a better way to finish out 2023 than to reflect on our recent experience in the hospital with Eliyanah. Truly I want to summarize it in a nice, short, concise paragraph and be done with it, but I need to process through it all and I think the details of all that happened and all that God did are worth sharing. He deserves the glory and praise! So I will do my best to recollect every aspect of this recent journey. If it is too long for some, I apologize! I have been picked on over the years for typing long messages and texts. haha. I suppose it's just that I can type almost as fast as I think, so I am telling you this story on the screen like I would be telling you in person. I know many of you were praying and still are. We FELT your prayers. I was floating on them, quite literally. They were like life preservers in a sea of uncertainty! I am overwhelmingly thankful for each time someone went to the throne of our Good and Loving King on our behalf!
The week of December 11th, we all came down with something. I don't know what, but it was pretty rough. Just when I thought Eliyanah was spared, she started in with just a tiny little cough. It wasn't a big deal and she was acting completely like herself. On Friday, she sounded congested but was crawling more than ever and so happy. On Saturday, she seemed tired, but we just thought it was because she had a slight fever and needed rest. By Saturday evening, she was seeming to struggle a bit with breathing. But she wasn't retracting, just had a bit of a croupy sound. I tried to use the nebulizer with her, and it started to get worse really quickly. I decided to call the Plaza ambulance to see if they could come check her oxygen level and tell me if she needed to go to the ER. I am thankful for rural ambulance services. They are not like other places. They have a lot of capabilities that you won't see in more populated areas! They came right away and looked her over. This was around 9 pm. She was still not retracting, her color was good, and when they did get an oxygen reading, it was 95%. We thought she was ok, and the paramedic told us that if we took her to the ER, they would probably send us home and tell us to do what we had already been doing. So, we decided to see how the night went. After they left, she got gradually worse throughout the night. We were taking her outside, trying steam, and it just seemed to only help a tiny bit, or not at all. Finally at around 3 am, she had been sleeping for a bit on me and I realized her breathing was faster. Derrick took her outside one more time, and this time it did not help. I took her in the bathroom and tried steam again, and she started grunting. This was something the paramedic told me to watch for, and I just knew. We immediately woke up the kids and headed straight for the ER. I prayed the whole time that she would make it there ok. It was a 45 minute drive. The kids did not realize how serious it was, but we did. Praise God, one of my dearest friends lives near the ER and I texted her and she immediately came and got our kids. That was the last I saw of them for nearly 4 days.
At the ER, she was visibly worse. Her color was not good, and they couldn't get an oxygen reading on her. I felt like screaming, "Just put a mask on her!" because I knew it was low, but they didn't do it until they got an accurate reading. It was 78%. I remember saying, "Is it really that low?" All the while knowing that it really was that bad. They did a chest x-ray and said it was probably pneumonia and that she needed to go to Minot. We sat there in silence, holding a mask on her face. I will never forget that moment. It was surreal. The next thing we knew, the plan changed to Bismarck because Minot was full. And then suddenly, I was sitting on a stretcher holding my very sick baby with an oxygen mask, and we were off on a nearly 2 and a half hour ride. We had thought the ER would maybe to do a breathing treatment and would send us home with instructions. And here we were, being rushed to the hospital. I remember being so terrified and yet so calm. Derrick brought me some things on the ambulance before we left and that was one of the most painful moments of my life, saying goodbye to him. Knowing he could not be with me. I will never forget driving away, hearing the paramedic tell the driver to put the lights on the whole way. As we rode through the darkness, I remember seeing the reflection of the lights and through the back window I could see several vehicles on the side of the road. It took me a bit to realize they were pulled over to let us go by.
That was one of the longest trips I have ever been on. Her vitals were ok, but her fever was worse and they had not given her anything at the ER, just oxygen. The trip was hard on her body. She was much weaker when we got to Bismarck. As we got into town, I noticed her breathing was a lot more labored and she was retracting. The paramedic gave her albuterol and it did give a little bit of relief. He then said, let's do sirens to the hospital. He was trying to make it sound like it was no big deal, and it was just because he didn't feel like getting stuck in traffic. But I knew it was because she was getting worse. We finally arrived at the ER to a whole team of staff who got right to work.
It took a while to get her stable, put in an IV, NG tube, figure out the oxygen level she needed, etc. By the time we got settled, she was exhausted. The amazing thing is that she was alert, screaming, kicking, and crying all during this time. She was incredibly sick, but had not lost her fight! This gave me hope. But I saw the faces of the staff. They were concerned. They kept looking at me, very quiet. Speaking in hushed tones. I remember in the ER, I was sitting on the bed with her while a very sweet, kind of older man (not very old, but older than me, and most of them were much younger than me, lol) named Bob was trying to get an IV in her foot. It was difficult, because at this point she was very dehydrated and finding a vein was almost impossible. He felt so bad, and I was just sitting there with my eyes closed, praying he'd get it. He finally did. I looked straight at him and said, "Is she going to be ok?" He didn't hesitate: "YES".
"Are you sure? Have you seen a lot of kids like this?" He looked me straight in the eyes and said, "I tell the truth, and I don't give false hope. I have seen many kids come back from this." I don't know if he really knew she was going to be ok or not, but his confidence calmed me. He wheeled us up to the PICU and I never saw him after that, but he was a Godsend. Another man in the ER patted my shoulder and was admiring Ely's red hair. He had a little baby at home, too. He was so kind. I just felt like they were saving her life and also taking the time to care about me. It was so beautiful and painful all at the same time.
In the PICU room, we were met with even more staff and even more chaos. The doctor was trying to explain to me what was going on while they were poking and prodding her and she was screaming. I felt like I couldn't even hear what he was saying. Our main nurse, Brooke, looked me in the eyes and said, "We need to get all this stuff done, and then I promise we will sit down and talk this all through." By the time they got her fully settled, with tubes and wires, she asked if I wanted to hold her and I practically shouted, "Yes!" They put her on me and she almost instantly fell asleep. Brooke was trying to ask me general questions and I could barely hear her. I was so distracted by my brain, all the things they were trying to tell me, everything they were doing to Ely. She finally said, "Let's do this later." I just couldn't answer questions and she was so patient. I just kept thinking, how is she going to heal if they won't let me feed her, and they won't even let her have milk in the feeding tube? What if I lose my supply? They need to let me pump. How do I pump while I'm holding her? I need to keep eating and drinking. I also need to stay calm. How far away is Derrick? Are the kids ok? All these thoughts were just racing until Derrick walked through the door. It was the most beautiful sight. He almost immediately took her so I could stand up and try to drink and eat something. If it weren't for the fact that I am a nursing mom, I would have had no desire to do these things, but I needed to do them for her. And after Derrick watched the ambulance drive away and then had to pack up the kids to go stay with another dear friend and take that long drive to the hospital, he was more than happy to sit and hold his little girl.
At first, I was extremely upset that they wouldn't let me feed her. I did not argue with them, but I questioned them every time they came into the room. I just could not process what was happening. I didn't get a full explanation about the oxygen until after they had already begun weaning her days later when she was doing better. But for the sake of telling the story, I'll just say that she was on Bi-Pap oxygen, at 60% Fi02 (We typically get about 21% from regular air) and 15L of pressure. This is a LOT. There is no way she could have eaten at this level of pressure. It would have been a huge risk of aspiration, which could be extremely dangerous with already infected lungs. I could hear the air going in and out, like a whooshing sound. I can't imagine trying to swallow with that, even as an adult. It was awful, and also amazing. It very likely saved her life, because this amount of pressure pushed her lungs open and helped them to stay open so she could finally move the fluid out. I told Derrick after a couple days that I hated that machine and also loved that machine because it helped my baby heal.
The doctor also decided to give her only a minimal amount of fluids, basically only to keep her just above severe dehydration. He felt that it would help her lungs dry out and clear out faster. I'm not one to argue with an ICU doctor, but I will say it was horrible to see her so dehydrated and miserable. And yet, after just an hour or so on the high pressure oxygen, she was sitting up on Derrick's lap, trying to play with a toy and wiggling all over the place! This gave us so much reassurance that while it might be a long stay, she was going to get better.
Sunday night I ended up sleeping in the recliner with her. They came in every half hour or so to check on her, do breathing treatments, and CPT, which is tapping on her back with a soft cup to break up the mucus. She seemed to be doing ok. In the morning I switched with Derrick and went to try and take a quick shower. When I came back, there were 3 staff members over her looking very concerned. The shift change had happened and Brooke was back. She listened to her breathing and felt like it was very diminished and not enough air was moving in her lungs. I just really appreciated her throughout the week, as she was the most proactive nurse we had who seemed to always be a step ahead of what she needed! As Monday went on, they started to sound more nervous. They had warned us that it could get worse before it gets better and that Monday could possibly be the worst day. And they were right. The doctor started saying things like, "We don't want to have to intubate her." This is when I really got scared. I thought she was doing better and now they were talking about taking more measures. They started doing continuous albuterol and gave her iv steroids. It was such a helpless feeling. I could do nothing for her. If she sat with me, she just cried because she couldn't nurse. She was so hungry and thirsty! I couldn't comfort her and if anything, being with me was just making her more upset. Derrick was able to keep her calm for the most part, so at some point after the doctor came in, he told me to take a little break. I stepped into the other room and called a very dear friend. All she did was answer and I just let out all the tears at once, like a waterfall. I hadn't cried like that yet, even with all the exhaustion and almost no sleep for two nights. I just remember her crying with me and saying, "Oh Melyssa, I know, I know. I'm so sorry, I know." She spoke what was in my heart, which is that our children are often the one thing we can't give to the Lord. We tell Him, take everything, do whatever you want, just please, please, don't let anything happen to my children. This is what had been in my heart for 11 years. She just read my mind without even hearing me say it and knew exactly what I was feeling. She prayed over me, and we hung up. I immediately felt calmer. I took a walk to the main floor and tried to go outside, but I had forgotten a coat and it was too cold. So I wandered into the prayer room. It was so peaceful and just...quiet. That is where I heard God speak as clear as ever. He said, "This is your Abraham and Isaac moment. You need to put her on the altar and trust Me with the outcome." Actually, it isn't the first time I heard Him say it, but it was the first time I listened. He had said it in the ambulance, and countless times throughout the first day. But in that moment, I knew my answer. He was right. I had not fully surrendered her or any of my other children to Him. I was trying to remain in control of every aspect of their lives, as if I really ever had control. I was too afraid to release them and accept that they actually belong to Him, and not to me. Peace washed over me and I prayed for the first time since becoming a mom, "OK. If you take her, then so be it. Not my will, but Yours be done. If You take her, I will still worship You. I will still praise Your name, and You will still be good. Oh God, please don't take her, but if You do, I know that the answer is the right one and I will trust in You."
It was truly a defining moment in my life. I went back to her room, still not knowing what would happen, but finally believing that I could face whatever happened, even if it was the one thing I feared the most.
So much has happened since the last time I wrote, I am not sure where to begin.
When I was first pregnant with Eliyanah, I thought I knew what I was in for. Sleepless nights, nursing, diapers, baby wearing, etc. Been there, done that. But then she arrived and nothing was like I expected at all. It was a period of confusion and sadness for me. I honestly felt that the baby I was pregnant with was not the baby I got. Like someone had switched babies on me somehow (pretty hard to do with a home birth, huh!). I grieved the loss of the baby I didn't have and tried to grasp the reality of the baby I did have. I am not going to lie...it was painful.
I still have my days where I feel this in a very intense way. I cry tears of wishing for what I had wanted. I ask God why He chose to do things this way. I fear the future and wonder what trials are ahead. Those are my days where my faith is weak and I am like Peter who stepped out of the boat and then took his eyes off Jesus and sank. I'm like the person without faith that James talks about who is blown and tossed by the wind. I cry until I have no tears left and I am a pretty pathetic version of someone who is supposed to believe that God is good all the time and that He is faithful and trustworthy.
ALL those things are completely true of Him. I know this. But I feel like the disciples must have felt when He asked, "Oh you of little faith, why did you doubt?"
And the answer is deep and has brought up all sorts of things that I thought I had worked through years ago, especially over the last 10 years. I thought I had grown in a lot of areas....and perhaps I have. But now God has been saying, "That's great! You've grown so much. Time for the next level."
Yes, I'm comparing my walk with Jesus to leveling up in a video game. It's a silly analogy but it is absolutely how it feels. We never achieve perfection. We are always growing and maturing, always improving in little ways. Then God works on us to refine us even more. Thus, trials. Challenges. Ways to cause us to step up our game.
I'm not calling my sweet baby a trial. Not in the least. She's a pure joy and I love her to pieces! She's this amazing little person who looks into my eyes and I am convinced she can see right into my soul. Which is quite a feat for a 3-month-old! She smiles and almost laughs and there's something about her little face that heals the brokenness I have felt over the past several weeks. She brings so much light into our family. But to say I haven't been hurting would be a lie. I want better for her. I want her to be well, and I know she will never be completely well this side of heaven. It is heart breaking and at the same time, when she achieves even the most basic milestone (and she's on track or ahead with every one of them so far!), it's a thrill that I have never experienced before, not even with my first baby. It feels like we have been graced with a real live miracle. I witness this daily!
Recently I read some incredible insight about Down syndrome. It changed my perspective and brought me one step closer to the peace I have been longing for. It basically said that it's a scientific mystery how people with DS are even alive, let alone walking, talking, and learning! This little baby had a 20% chance of surviving the initial egg release. Only 20% of those eggs survive fertilization, and only 20% of THOSE even survive the first cell division! I'll let you do the math, but those are some pretty incredible odds. And not only do they survive, they are able to learn and grow and have a happy and meaningful life. How is this possible? My only answer is that it is all God. And yes God sustains all of us, He gives us the ability to take every breath. But most of us aren't a scientific wonder. Our cells are in order and everything makes sense. But for people with DS, their cells are basically in a constant state of chaos. And yet.....they are ok! More than ok. How do we explain this but that a loving, faithful, kind, compassionate God has chosen to work miraculously to make it this way?
I re-listened to an old sermon from Paul Tripp the other day. It was from I Peter 1. I remembered that I had listened to it when I was pregnant with Esther, and I knew the general topic, but I didn't remember any of the details. It was like he reached into the future and preached it directly to me. He spoke about how we are to rejoice in suffering. My biggest question about this has been, How? How in the world do I rejoice when everything I expected for life has been turned upside down? I felt this sermon was the answer I had been searching for. He shared that when we are upset about the things that happen in life that go against our plans, it's because are not thinking about giving God glory. Instead, we are thinking about our own glory. Our own comfort. It's so true, though it was painful to hear. If I was really all about God's glory, I'd be thanking Him for this little miracle that I get to raise and love and watch what He does in her and through her! But I've been wallowing in self-pity and doubt, wishing she was more like my other kids, wanting her to be able to do all the things they did. Is it for her that I wish this, or for me? I already know the answer. I want her to be successful in the only ways that matter. Knowing Jesus, following Him, and sharing His love with others. This is all I want for my other kids, too. At the end of my life, I won't be wondering if I was smart enough or achieved enough by human standards. I will only be hoping that I lived this one life well. Just longing for those words, "Well done, good and faithful servant". Looking forward to an eternity of praising the One who deserves all the honor and glory.
I have had so many moments of God speaking to me, but it feels so hard to grasp what He is saying, I told Derrick that I have always heard Him loud and clear in the big life-altering events, but this time He feels more distant. Like I am under water and can't make out the words. Derrick so profoundly said that it's because all those other times, I was experiencing changes that I wanted...but this time it is painful and not what I wanted. So it is harder to hear His voice. And this is where I am reminded that my faith can't depend on my feelings. They will lie to me and make me think I am alone, forgotten, and abandoned. I need to remember God's faithfulness. The times He came through when it seemed that hope was lost. This is what I need to inform my faith with. Facts. Why is it so hard to remember truth when we are sad and hurting?
All this is to say that I have a lot of work to do in order to get where I want to be. I am trying to embrace this new path we are on as a family, but I have not done a very good job of it thus far. I am thankful that God is patient with me, and that He is forgiving and gracious. I have experienced that in a very real way many times in my life, and even more so now. I know He is near. I do hear His voice, sometimes a little more clearly, sometimes less...but He IS there. Each day I believe just a little bit more that things are going to be ok. And on the tough days, I still WANT to believe it. So at least that's something!
As for updates on how Eliyanah is doing, she is doing amazingly well. I still can't quite understand it. She's eating well, no more bottles needed! She is strong, in some ways even stronger than my other kids were at this stage. I smile when doctors tell me she has low muscle tone. They didn't feel her move every minute of the day like I did when I was pregnant! She is determined to crawl. It's pretty amusing to watch her push her legs up underneath her and try to lurch herself forward, which she now does regularly. Once she figures out the arms are a necessary piece, I think she will be going places! She loves for us to hold her in a standing position and she works so hard that her little muscles sometimes start to shake...and yet she doesn't quit. She is a fighter for sure! She "talks" to us with all kinds of sounds. Sometimes it seems like she's singing, other times she mimics what we say to her. She makes the sound "hi" and it sounds like a perfect little greeting. She smiles and almost squeals with excitement sometimes. Not laughing yet, but I think she will soon. She is doing so many things that she "shouldn't" be doing right now. And that reminds me that God is the one who decides every detail of her life. And every detail of each of our lives. We can fight Him if we choose, but we will be so much safer and happier if we just let Him take the reins and follow His lead. I have a lot to learn from this little miracle!
I titled this, "Overcoming or Being Overcome?" because sometimes I'm not sure which one is my reality. I know Jesus has already won the victory and He gives me the strength to overcome. But I still have to choose to fight. We love the song, "You've Already Won" by Shane & Shane. The chorus says,
"I'm fighting a battle You've already won
No matter what comes my way, I will overcome
Don't know what You're doing, but I know what You've done
I'm fighting a battle You've already won."
I still have to make a choice every day to fight. And that goes against who I am in my sinful nature, which is basically the opposite of a fighter. I like to give up when things get tough. I want to run away and hide. But that is not an option this time. My little girl needs me to be strong and I have Jesus who has already won so that I CAN be strong. It's one day at a time, but my prayer is that I will become a fighter just like Eliyanah, who defied all the odds to be here. She certainly is overcoming, and I pray I can follow her sweet little example.
Until next time, please keep us in your prayers and please keep on fighting, whatever your battle may be!
