Praying for perseverance

Today is February 4th. I’m sure many are wondering if Zion made it home today. Well, the short answer is, “No”. The nursing agency wasn’t able to get us staffed with the nursing hours that we needed in time, so Zion’s departure has been delayed to an unclear date, possibly falling in the week after next. Now that the end is so close, surprisingly it’s getting harder for me to be patient and wait – because it’s so close I can smell it! I asked today if the team would be willing to let Zion come home now, without nursing, so he could be with us while we wait on nursing. I feel confident I could handle it, but it seems the team won’t allow it. Sometimes it all just feels so unfair. Caring for Zion, my other two children, and my husband in our home I truly don’t feel will be my greatest difficulty. Caring for Zion and the rest of my family while going back and forth between home and the hospital almost every day is my greatest difficulty. One of our favorite respiratory therapists came in recently and told me how she notices such a difference in Zion’s face when he’s sleeping alone there in his hospital bed vs. sleeping on my chest when we’re visiting him. She said how his face looks so much more peaceful when he’s with me. It was so touching to learn that. I told her that was the reason I wanted him home now, as I burst into tears. She comforted me sweetly by telling me how many on the floor admire me and how she feels that it’s so evident that God chose us to be Zion’s parents. Her words comforted me so much as I cried to her and said, “I just want him to come home.” She said , “I know. It’s going to happen,” as she rubbed my shoulder. She had a confidence when she said it that was like honey for my soul – it gave me peace. And she gave me that little bit of encouragement I needed to keep pressing on. This journey truly is a marathon, so with God’s grace I will keep being patient as we wait in hope. (My husband thankfully has a much easier time being patient with these sorts of things).

There is so much to share since my last blog update. Mostly things have been good, but there have been a few difficult bumps in the road (which we have now come to expect in this Trisomy journey). Where to begin??? I will start with one favorite thing that happened. The other day I bought my very first case of diapers to prepare for Zion coming home soon. I never thought buying a case of diapers might bring me close to tears before, but this is a very special case of diapers indeed. (Huggies size 4, if you’re curious). 😁

Some other things that make me smile are, for one, how Zion is really starting to grow up. Have you seen him – he is quite the chunky monkey! 🙂 His first little bottom tooth is working its way to full stature, while it feels like others are on the way. He’s really good at consistently getting his thumb or his “niblet” into his mouth now, which is perfect timing for his subsequent teething. But he’s just as happy to chew (very hard) on one of my fingers as well – OUCH! Another cool milestone developing is when I put Zion on my chest, how he tries to army crawl on my belly. This boy wants to crawl now! It’s so easy to forget that being just shy of 11 months, this is when many babies are beginning to try to walk. If only he weren’t tied to a ventilator. And I have especially cherished the moments as I hold Zion when he rubs my chest with his fist, back and forth, back and forth – oh how that comforts me! And then, as he falls asleep, I adore how he punches his fist into the crook of my neck. All these little Zionisms make my heart melt. It’s truly been a privilege to see him grow up in his own way, at his own pace, governed by the Lord. It’s awesome to see where we are today, when 10 1/2 months ago we were praying to just see Zion take a few breaths. God is so good. And in His goodness, He allows hard times as well to help us grow and shape our character.

Remember I posted a few months ago about how there’s “something about Sundays”? Well Zion had his first “code event” in a while, back on Sunday January 12th. It was while he was having a bowel movement, of course. Zion’s primary nurse said she was glad I wasn’t there because it was apparently hard to watch as our little guy actually went unconscious this time as his heart rate and oxygen saturation both plummeted to near zero during the event. Thankfully he recovered quickly as is his warrior fashion.

Because of this episode, I really intensified my “asks” of the team regarding his bowel regimen because these bowel movements were almost costing my son his life – and we simply had to exhaust every (viable) option in order to get him more stable in this area before going home. And based on what I learned from my Trisomy group, there were still other things to try. One of those “things” that caught my attention was learning more recently that rectal dilations have helped some Trisomy babies. This intrigued me. What if Zion’s issue was more structural in nature? The diagnosis of a smaller or tighter rectum was thankfully pretty simple (just very annoying for Zion). The GI surgery team came and did a quick digital exam (inserting a finger into his rectum). Zion DID NOT appreciate this, as you could imagine. Boy did he (silently) WAIL! My poor baby. But that pain was worth it, because that exam lead to him being officially sized down there. The results were soon in, Zion was indeed smaller in his rectum than he should be! He was sized at a “10”, but a normal infant his age should be a “14”. You guys, you have no idea how much relief and hope this news brought me. Because if this new diagnosis is indeed what is causing my son’s dangerous episodes, this is a relatively easy fix! Time will tell, but the dilations are already under way. We do them twice a day for about 4 weeks to get Zion to the correct size – we are already about halfway through the process. We will let you all know how it goes!

Another area of difficulty for me has involved some interactions with the medical team, or lack thereof I guess one could say. The liver team refused my request for a consultation about my son’s enlarged liver. My goal was just to ask some forward-thinking questions for planning purposes. They had their reasons I guess, but I don’t agree with the decision. That “no” was especially hard for me because it felt so unjust – and it really caught me off guard and was so unexpected. But who knows, maybe it was just God helping me to stay present in today and not be anxious about tomorrow? Another difficulty was finding out the other week that Zion has fully dislocated hips. This was actually caught on accident thanks to an abdominal ultrasound being taken at little bit of a “wider” view than normal. I was at first somewhat angry. How could this have never been caught before on x ray? I also learned that babies who are breech in the womb (like Zion was) are at a higher risk of hip dysplasia. Why didn’t anyone tell me this back when I was pregnant so that we could monitor for this in Zion? Had we caught it earlier, there’s a chance that we could have tried (non invasive) bracing in order to help the hips go back into proper position. But now, he was too old to try this. I was angry because I felt uninformed and that my son was robbed in a way. But God quickly softened my heart. The ortho team asserted that Trisomy babies often have difficult hip sockets that are more prone to the hips always coming back out. And the doc also assured me that he knows of many people who can stand and walk on two fully dislocated hips. That was news to me! There’s always something we can be thankful for, and in this situation, we are so relieved that at least the dislocated hips seem to cause no decrease in range of motion or pain to Zion. So I’m taking those tidbits for what they are, and am hoping that my son will indeed still be able to bear weight on his legs, one day. Because we know that with God, all things are possible! So far, he shows us little signs of hope as he frequently kicks his little legs and pushes on things with his feet.

But where I could use the most prayer would be for God to strengthen my inner man, as the Lord tests and refines me by fire in this journey. I have been meaning to write about the difficult side of this journey for some time, but am only just now getting around to it. Since Celia left us, life has grown increasingly more difficult for me. I think it’s so important for Christians, as they witness the gospel of Christ, to share the vivid realities in their very own lives of the struggles that God told us in advance that we would face – such as personal testimonies of sin, suffering, and how we experienced God’s help and deliverance. For those that don’t know me, I have always been a woman who has been known to “have it all together”. And if I ever didn’t for a short period of time, I was a master at hiding it (before I knew the Lord). As a new creation in Christ however, I am learning that weakness is the beginning of finding God’s strength (2 Corinthians 12:9,10). I’m a firstborn, “Type A”, somewhat perfectionistic, overachiever (God help me). I’ve always been organized and methodical and have a “driver” personality. I was encouraged a lot growing up and am used to doing well and succeeding at most things in my life – including my 15-year sales career in the corporate world. And above all, I was raised to be strong, self-sufficient, and to do things for myself. But this is what has been getting me into trouble. Because God doesn’t want you to do for yourself. He wants you to die to yourself as you rely on Him.

Where I am today, that successful woman I used to be seems like a distant figure of the past now as the Lord is bringing all of the above to a pile of rubble. To put my current struggle in a nutshell, I feel as though there’s not enough time in a day, and there’s not enough of me to go around. A stay at home mother can’t do her job very well if she’s not at home enough. My husband deserves more of me, my children deserve more of me, and I need to be a doing quite a lot more for my home as everything piles up around me. But most importantly, God deserves so much more from me. I’m chronically behind in everything now because I’m never in one place for too long. As my neighbor Judie recently told me, “You’re always moving”. It’s sad, but true. My (almost) 3 year old son and 4 year old daughter are in such crucial times. My son still isn’t potty trained and I know it will simply not be possible to execute this until we can consistently stay in the privacy of our home (but even when that day comes, we will have nurses in the home with us – so what will that look like?) I digress… My daughter needs so much more individual time with us as she’s growing and maturing and going through a really emotional stage. I realized the other day that, out of my entire family, Zion most definitely is getting the best quality time out of me in any given week. He gets on average 2 hours straight of pure love, kisses and affection as I hold him (on most days). I sadly can’t say I give my other two children and husband that. They definitely are getting my leftovers and I feel sad about that. And then there’s Jesus, my first love… He is who I should be spending the most time with in a day out of everyone. Just the time needed to be on social media to learn in my Facebook groups, attend to emails or even to write this blog has been a huge distraction to my walk with the Lord. I’m struggling in many areas right now because of this lack of time with God, and let’s just say, it shows. I’m just doing the best I can on my good days (which isn’t very impressive). And on really bad days, I’m sort of in this paralyzed state where I can’t bring myself to do much of anything. People often call or text me asking what I need. As you read above, these are things that people can’t help me with. These are things that only God can help me with. So I am praying and waiting for Him to deliver me. He never fails me. And so, I just ask people to PRAY.

I’ve always wondered what would be my “Achilles heel” that God would use to break me (so He could rebuild me in His glory). I think this just might be it. I’ve always prided myself on being able to handle and take care of everything, but I no longer can with this “double life”. I oscillate between not being home long enough to make any real progress anywhere, and being home yet having this strange and unusual inability to execute and DO anything. This is so different than who I used to be – before I was known to be someone who could get the job done, and get it done quickly. Also, when the Lord saved me and called me out of darkness in 2012, I finally saw my sin clearly, and one thing I learned was that productivity was most definitely an idol of mine. I’d be lying if I said that idol was completely gone at this point. If I can’t get things done, check things off my list, get somewhere on time, or make things better that I see wrong, anger can quickly arise because I cannot achieve my goals. I don’t like to be hindered. (Anger is always the tipoff that an idol is lurking in the background). I’ll also share that I’ve always had a strong disliking of incompetence when I see it in people (because I truly didn’t understand grace until very recently), and lo and behold – I am currently about as incompetent as I have ever been in my life! I put my shirt on backward this morning and almost left the house like that. I’m struggling. It’s like I’m slowly becoming my own worst nightmare. I truly don’t know who I am right now and am being greatly humbled by God.

As if you needed more examples, I’ve also been having a hard time with how little alone time I have. I am a very private person and need a lot of time by myself in order to have a clear mind and have peace. If I can’t get enough alone time in a day, I literally start to unravel and sin will abound. This journey simply doesn’t allow for that. In the hospital I’m basically in a fish tank where I’m always being watched or having to talk to someone. At home, we have frequent visitors because of all of the help we have been getting. And then when Zion comes home, we will have nurses, perfect strangers, in our home almost every day, for most of the day. I truly don’t know how my personality is going to handle that for the long term. I truly will need God’s help this entire way. Zion coming into our life has turned my little, simple world so upside down, that I’m just barely keeping my little nose above the water line. I literally feel like I have almost nothing at all to give to anyone anymore. More times than I would like to admit, I fall to my knees and throw my hands up at God in complete, desperate surrender crying out through tears, “How much more God!!! How much more?!! I can’t do this anymore. I’m failing. Help me God!!!” Sometimes I feel as though the only way I can sink any lower is to be in a dirt pile throwing dust and ashes on my head. I’m not there yet. But almost. As I said before, the old me is indeed dying. HOWEVER, I have been prepared for this because of God’s word…

Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy…

1 Peter 4:12,13

I know that this struggle is light and momentary in the grand scheme of things as 2 Corinthians 4:17 tells me. And I can have hope in the midst of it because I also know that it is preparing for me “an eternal weight of glory beyond all comparison.” I can keep going because of that truth, as it literally gives me strength to persevere because of the immense hope of what is to come for me in eternity. I wanted to share my current sufferings so that others can know that, YES, I’m having a very hard time right now. I’m more emotional than I normally am. I’m asking my children and husband for forgiveness all day long. I sometimes even leave the house looking like a hot mess. But NO, I am not depressed, I am not giving up, I’m not searching for medication or a strong drink, because I know that I HAVE JESUS. He is with me in this trial and has not forsaken me. And I believe He is answering my prayers by allowing me to come to this point. I often ask Him to grow me up in the Lord, to help me to be more like Christ. I believe He is allowing me to hit a sort of rock bottom in order to root out areas in my heart where I still rely on myself and not on Him. Old habits die hard.

A 100% trust in God’s sovereignty and knowledge of His character is what keeps me going. Knowing that He has a GOOD purpose in our pain and suffering is what keeps me from sinking into depression. God’s truths are anchors for my soul during this time. I will not be crushed by this current trial because God’s word has promised that it won’t. And I’m so thankful that my standing before my Heavenly Father has nothing at all to do with my terrible performance in life right now. But it has everything to do with what my Savior, Jesus Christ, did for me on the cross. My Heavenly Father is pleased with me because He sees Christ in me. These truths have brought me peace, despite my current failures and inadequacies. The scripture below is what it’s all about. It tells us in advance what will happen, and gives us hope attached to the suffering, along with a reason why we have to suffer. Worthy is the Lamb of God! And Zion as well is worthy of all of the “suffering” I’m currently enduring. Do you see how precious he is???!!! I love that little boy so much and wouldn’t change any of these moments. This is where God has me right now, and I humbly accept it. May the Lord’s will be done so that more of His life will be birthed in my body.

We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed— always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body.

2 Corinthians 4:8-10

So, as I endure this trial, I’m trying to keep focused on a few simple things. First, I need time with the Lord every day. Everything truly flows from that. I have embarked on a Bible study this year on womanhood that I’m excited about. It will be a change from my typical Bible reading plan or devotional that I do every year. Pray that this will be blessed. I also have set my phone alarm to remind me to pray three times a day (morning, noon and evening – just like Daniel did). Why? Because when the going gets tough, I put my nose to the ground and become so entrenched in survival mode that I truly forget to pray. That technology has helped me. For my children, I know that the most important thing I can do for them in this life is to teach them to know Jesus and to love Him. So the time I spend with my two older children is comprised largely of that as we talk (and sing) about the Lord as we go about our day. The Bible songs we sing daily to help my kids memorize scripture God has used in my life as a way to prompt me to pray in the moment and to encourage me. And with God’s help I’m waking up each morning with renewed energy to love and serve my husband to the best of my ability. I’m thankful that he has so much grace for me at a time when I’m not at my best. And when it all comes down to it, I’m continuing to learn grace. Grace for myself, and grace for others. There are opportunities to show grace all around us.

In closing, I officially finished my hospital training a couple weekends ago by completing a 24-hour “room in” with Zion. This is where the parent stays with the child for 24 hours straight and does virtually all of the child’s care alone. So I had the pleasure of changing all of Zion’s diapers (yes, I cherish even that), giving him all of his feedings, doing his AM and PM Trach/stoma cares, bathing him, playing with him and holding him all day (and night) long, and of course giving him his plethora of medications. Speaking of meds, Zion has eighteen medications that we will need to give him at various times between the hours of 6am and 10pm. I might as well become a pharmD! 😜 But seriously, the time with Zion all day and all night the other weekend was an incredible blessing to both him and I. It’s hard for anyone to understand unless they have had a child in the hospital long term, but when you can’t fully care for your child, it’s like a piece of your heart isn’t complete. Because, in particular for a mother, caring for the daily needs of your child is love; because the Bible declares that love is an action (1 Corinthians 13). So it’s like we are hindered, in a way, from fully loving the child God has given us. That has been very hard for me. So to be with him during that time, finally free to solely do all things for Zion, brought my heart so much joy and fulfillment for the very first time since he has been born. I cherished the time, and I could tell that Zion did as well by how happy and content he was the majority of the time. And I appreciated so much the real-life training that the rooming-in experience is giving both of us to prepare us for what home life will look like. In addition, it is instilling in us much needed confidence that God has indeed equipped us to properly care for Zion when he comes home.

Here are some more praises we want to share!

PRAISES:

  • Our “quarantine plan” for our family this winter cold/flu season has worked. Thanks be to God we have all stayed healthy so far, which in turn has kept Zion healthy. It’s been a big sacrifice for all of us, but was a necessary choice in order to not delay Zion’s homecoming. We’re so close and will continue to pray for health as the discharge date approaches.
  • Zion’s eye healed shortly after my last blog update. His baby blue is as good as new. Thank you for praying!
  • Daddy and I made Zion “portable” for the very first time! It took time to pack up all of his equipment onto our double stroller, but the effort was so worth it. It was so precious to watch Zion’s curious eyes looking around as we walked the TCC hallways for a short time! (See photo below). We can’t wait to do walks outside with Zion when the weather warms up.
  • When children discharge from the hospital for the first time, they must quickly establish care with a pediatrician. This is a little more challenging for babies like Zion as they require what’s called “complex care pediatricians”. These can be hard to find depending on the area where you live. Thankfully Zion was recently accepted into the Complex Care (outpatient) Clinic located here at the hospital. This team will handle all of Zion’s care once we step out of the hospital, and they also will do all of his sick and well-check visits. This center is ideal for where Zion is currently (health wise) because it has all the medical disciplines that he requires for optimal care all under one hospital roof. Thanks be to Jesus for this provision as this clinic apparently has an extensive waiting list.
  • We continue to receive blessings from the Lord through the hands of His servants. These blessings have included help watching our children, love offerings, gifts for our children, medical supply items Zion will need at home, more delicious home-cooked meals, and shoulders to cry on. Every blessing touches our hearts because we know it is Jesus Himself loving us.
  • We have made the decision to end the “family quarantine” once the cold/flu season is over. This means that come the early spring, our children will begin to attend their beloved church classes again. And in the fall Eden will be enrolled in kindergarten with our local Classical Conversations homeschool team. This will allow me to continue homeschooling our daughter while also giving her much needed time socializing with peers, building friendships and engaging with her other homeschooled classmates every week. While our children have sacrificed a lot in 2019, we are so grateful that they are young enough that they truly don’t know what they have missed. We appreciate those who have expressed genuine concern for our other two children. And we want to assure everyone that our children have been very happy and content this year despite what they haven’t been able to do. So we look forward to getting the kids back to church and school this new year, as we trust and hope in God to bless us with health… and as we diligently practice good hand washing and hygiene 😉

PRAYERS:

  • Please pray that George and I would make time every day to spend time with the Lord in His word and in prayer.
  • Please keep praying for home nurses who are brave and courageous. Zion always has, and continues to scare people because of his fragile state. I’ve met three so far – two of them didn’t work out (even though I liked them both a lot), and the other one can help us, but only on a limited schedule. So the search continues. The new discharge time frame they are hoping on is around 2/18, but that isn’t set in stone of course.
  • Pray that God would bless George to be successful as he finishes out his portion of the rooming-in training this upcoming weekend.
  • Thank the Lord for His goodness and ask Him to please keep our family and your family healthy in this new year. We have heard of a lot of illness and flu this winter.
  • In the same vein, please pray that the rest of Zion’s hospital stay will be comfortable and enjoyable for him, and serious event-free.
  • Pray that the rectal dilations will be the end of these dangerous and painful episodes during our son’s bowel movements. So far, so good!
  • We have lots to do in our home before Zion comes home. Prayers that we can complete the rest of the home organization and deep house cleaning that must take place before the medical supply company comes to set up our home before Zion’s arrival. In addition, pray that God will give us the wisdom to buy all the necessary supplies (not covered by insurance) for Zion in advance, so that we don’t have to do a lot of scrambling and running around after he comes home.
  • Pray that God would prepare our family’s hearts as we approach this new chapter of life. We know that God shapes our character through uncomfortable or difficult changes, so we pray for cheerful hearts during this time.

THANK YOU EVERYONE FOR CONTINUING TO FOLLOW ZION’S STORY. YOUR PRAYERS ARE PRICELESS.

The LTV ventilator – the sixth person in our family whom we love dearly for helping our son to breathe
Daddy performing CPT to help clear Zion’s mucus
rubbing mommy’s chest – back and forth
Zion’s first time sitting in a stroller to prepare for a future walk.
It’s been too long since we had a photo of all five of us!
Pure, Heavenly bliss, fresh from sleeping on mommy’s chest
Zion enjoying music therapy
Zion’s first time going on a walk in the stroller!
He was so curious at everything moving past him
I consistently know how to find my thumb now!
My lovely neighbor (aka my Kentucky mom) Judie who has been so helpful to us in watching our children. We love her!
“From Zion, perfect in beauty, God shines forth.” – Psalm 50:2

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