Drinks in the Desert
Family and Friends,
There are a few updates on Nathan, which you will find in bullet points below. A little further down I have shared some more personal thoughts for those who have been asking and want to know. Thank you so much for your continued service, support and prayers for us. To say thank you again and again on a blog seems so shallow but please know we mean it deeply.
Nathan's Updates:
* Nathan is breathing on room air - no oxygen support!
* Nathan is finally experiencing less pain and seems to be weening well from the drugs... finally!
* Nathan will have a sleep study tonight (Wed.) and then should be release from the PICU after 23 days and send to a normal floor
* Towards the end of this week and early next week Nathan will have a few digestion tests done to try help us decipher if his digestion troubles have anything to do why he aspirated. Our prayer is for clarity and unity in all these tests to help the us know how we can best proceed. Obviously, we want to be able to continue feeding Nathan orally if we are able to safely. If they are concerned that Nathan isn't going to be able to keep taking a bottle and then solid food safely, there will be more serious discussions about a more permanent feeding tube. Please pray that this is not the case.
* Please keep praying for the logistical details regarding using the Dr. in Dallas for Nathan's ongoing Apert related needs. There are some road blocks with insurance etc. I won't bore you with the details but it is pertinent that we get everything settled well before Nathan's first surgery. Please pray that that doctor and our insurance will be able to agree on prices that will allow us to use this Dr. Please also pray for these answers to come in a timely manner so that we have time to work out a plan B if we have to.
My brother is getting married to a wonderful woman this weekend so Madison got her first (and long overdue) haircut. I wasn't able to be there so Jonny took a picture...
Drinks in the Desert
“I will make a roadway in the wilderness, rivers in the desert. The beasts of the field will glorify Me, the jackals and the ostriches, because I have given waters in the wilderness and rivers in the desert, to give drink to My chosen people. The people whom I formed for Myself will declare My praise.” Isaiah 43: 19-21 (emphasis mine)
How I came across these verses yesterday I cannot even remember but I read them and my heart stood still. The imagery and truth in these few sentences resonates so deeply within. The ridiculous paradox - rivers in the desert - is a great description of what I feel like we have been experiencing.
The desert...
In many, many ways the last 23 days have been a desert type experience. In fact, it is like these 23 days have been a desert in the midst of another, bigger desert (or maybe tornado?) that life has felt like since October... but I digress... For the record, everyone, everyone, everyone has desert experiences. And I know that. It’s because we live in a broken world. And most of us have multiple desert experiences. Some are short, some are life long...the point here isn’t to compare them, or to address them on a larger, philosophical scale. This is just me (Jen), on a personal blog sharing about my current experience.
In my current desert, my 3 month old son was on a ventilator for 9 days, while I sat and watched and wondered if he would be able to come off. I watched him lay paralyzed, with a tube down his throat and a machine forcing his lungs to expand while I wondered if whatever was causing his respiratory system such distress would go away or if it would only get worse. In my desert, there have been very real, very terrifying questions of, “are they going to take him off only so that I can hold him in my arms while he takes his last breathe?” In my desert, doctors use phrases like, “life and death situation” and “he may need a more permanent feeding tube put in and not be able to eat for a few years” so casually while I find myself having to stand there and nod and will myself not to cry and to stay engaged and to listen and think. Think, think, think, and don’t cry so that I can ask questions. In my desert sometimes the enormity of it all hits me and I just want to sob but in walks a doctor or nurse or therapist... In my desert I realize it’s my son’s 4 mo. old birthday only because his dad sees the date on the screen of a computer while they try to thread a tube into a small intestine through a narrowed opening so he can have food. In my desert, my 20 month old daughter who is learning to talk starts saying, “Nay-Nay, Hopa” because whenever she asks about her brother she is told “Nay-Nay is at the hospital.” In my desert, my children haven’t been able to be in the same room for over three weeks. In my current desert, saying “good night” means saying goodbye to my husband and at least one of my children. In my desert, there have been nights that I have opted to stay at the hospital rather than go home because home is a hallow place without either of my children in it.
And lots of things die in deserts... Some big and some little. But even the little deaths begin to accumulate, compounding sorrow. There are deaths of plans to have Nathan dedicated at church on my birthday. The hopes of introducing Nathan to my extended family at my little brother’s wedding are now gone. Jonny is supposed to officiate... that dream is now also being held loosely. Then there smaller ones, like having to miss my daughter’s first hair cut. There are little deaths of another small group missed, another week (make it three) of relationships I long to invest in but can’t... None of these are that important in light of what has been going on but again, they add up. And they are added onto a pretty crazy last three months.
BUT... Waters in the wilderness and rivers in the desert...
I am humbled and blown away to realize that even in my desert, I am being sustained. Even in a dry, hard and wearisome place I am given sips of water. Just enough to keep me alive, to keep me going. Just often enough to assure me that I am seen. I am known. Someone hears my heart, sees the tears -those shed and those withheld- and He will hold and sustain me. It reminds me of another verse in the Bible that says, “We are hard pressed on every side, but not crushed; perplexed, but not in despair;” (2 Corinthians 4:8) He provides relief, even in the desert. Some things die, and yet there are new things he is doing... The question is, will I perceive them? I just have this image of God providing “sips of water”, sips of relief, a million times a day in a million ways. A friend coming to the hospital on Sunday morning, my small group meeting me and praying with me there, a best friend flying in to be with me, an email, a text of encouragement, a card, a card made and sent to Nathan, lunch with someone speaking truth, women offering to be available at any moment, (and meaning it!), Jonny’s mom coming in to help ensure that at least I can be at my brother’s wedding, people loving on my daughter in my absence, friends staying at the hospital for a night at home, getting to meet with a college girl after Maddie goes to bed while I am at home one night, people cleaning, cooking, driving, praying, giving to us financially.
These verses were spoken through a prophet and they actually reference a real time where God provided real water for real people (the Israelites) in a literal desert. God is using his prophet to remind his people of his literal, tangible faithfulness to them. God is still faithful today. I believe that with all my heart. Even in the desert, He will sustain me. I can choose to dwell on the fact that I am in a desert or the fact that he is sustaining me, sip by sip. It does not feel lavish right now but the truth is, he is still upholding me. I am one of his chosen people which means I am formed, for him... My essence is his,as are my days. I was formed FOR him. Lastly, he says his chosen WILL give him praise. He is confident of the fact that he will receive praise from me, from my lips. He can be confident of this for the same reason that I can be confident that I will not be crushed or abandoned, even in the desert... Because my being sustained and giving him praise are both a result of HIS faithfulness to me, not mine to him.
There are a few updates on Nathan, which you will find in bullet points below. A little further down I have shared some more personal thoughts for those who have been asking and want to know. Thank you so much for your continued service, support and prayers for us. To say thank you again and again on a blog seems so shallow but please know we mean it deeply.
Nathan's Updates:* Nathan is breathing on room air - no oxygen support!
* Nathan is finally experiencing less pain and seems to be weening well from the drugs... finally!
* Nathan will have a sleep study tonight (Wed.) and then should be release from the PICU after 23 days and send to a normal floor
* Towards the end of this week and early next week Nathan will have a few digestion tests done to try help us decipher if his digestion troubles have anything to do why he aspirated. Our prayer is for clarity and unity in all these tests to help the us know how we can best proceed. Obviously, we want to be able to continue feeding Nathan orally if we are able to safely. If they are concerned that Nathan isn't going to be able to keep taking a bottle and then solid food safely, there will be more serious discussions about a more permanent feeding tube. Please pray that this is not the case.
* Please keep praying for the logistical details regarding using the Dr. in Dallas for Nathan's ongoing Apert related needs. There are some road blocks with insurance etc. I won't bore you with the details but it is pertinent that we get everything settled well before Nathan's first surgery. Please pray that that doctor and our insurance will be able to agree on prices that will allow us to use this Dr. Please also pray for these answers to come in a timely manner so that we have time to work out a plan B if we have to.
My brother is getting married to a wonderful woman this weekend so Madison got her first (and long overdue) haircut. I wasn't able to be there so Jonny took a picture...
“I will make a roadway in the wilderness, rivers in the desert. The beasts of the field will glorify Me, the jackals and the ostriches, because I have given waters in the wilderness and rivers in the desert, to give drink to My chosen people. The people whom I formed for Myself will declare My praise.” Isaiah 43: 19-21 (emphasis mine)
How I came across these verses yesterday I cannot even remember but I read them and my heart stood still. The imagery and truth in these few sentences resonates so deeply within. The ridiculous paradox - rivers in the desert - is a great description of what I feel like we have been experiencing.
The desert...
In many, many ways the last 23 days have been a desert type experience. In fact, it is like these 23 days have been a desert in the midst of another, bigger desert (or maybe tornado?) that life has felt like since October... but I digress... For the record, everyone, everyone, everyone has desert experiences. And I know that. It’s because we live in a broken world. And most of us have multiple desert experiences. Some are short, some are life long...the point here isn’t to compare them, or to address them on a larger, philosophical scale. This is just me (Jen), on a personal blog sharing about my current experience.
In my current desert, my 3 month old son was on a ventilator for 9 days, while I sat and watched and wondered if he would be able to come off. I watched him lay paralyzed, with a tube down his throat and a machine forcing his lungs to expand while I wondered if whatever was causing his respiratory system such distress would go away or if it would only get worse. In my desert, there have been very real, very terrifying questions of, “are they going to take him off only so that I can hold him in my arms while he takes his last breathe?” In my desert, doctors use phrases like, “life and death situation” and “he may need a more permanent feeding tube put in and not be able to eat for a few years” so casually while I find myself having to stand there and nod and will myself not to cry and to stay engaged and to listen and think. Think, think, think, and don’t cry so that I can ask questions. In my desert sometimes the enormity of it all hits me and I just want to sob but in walks a doctor or nurse or therapist... In my desert I realize it’s my son’s 4 mo. old birthday only because his dad sees the date on the screen of a computer while they try to thread a tube into a small intestine through a narrowed opening so he can have food. In my desert, my 20 month old daughter who is learning to talk starts saying, “Nay-Nay, Hopa” because whenever she asks about her brother she is told “Nay-Nay is at the hospital.” In my desert, my children haven’t been able to be in the same room for over three weeks. In my current desert, saying “good night” means saying goodbye to my husband and at least one of my children. In my desert, there have been nights that I have opted to stay at the hospital rather than go home because home is a hallow place without either of my children in it.
And lots of things die in deserts... Some big and some little. But even the little deaths begin to accumulate, compounding sorrow. There are deaths of plans to have Nathan dedicated at church on my birthday. The hopes of introducing Nathan to my extended family at my little brother’s wedding are now gone. Jonny is supposed to officiate... that dream is now also being held loosely. Then there smaller ones, like having to miss my daughter’s first hair cut. There are little deaths of another small group missed, another week (make it three) of relationships I long to invest in but can’t... None of these are that important in light of what has been going on but again, they add up. And they are added onto a pretty crazy last three months.
BUT... Waters in the wilderness and rivers in the desert...
I am humbled and blown away to realize that even in my desert, I am being sustained. Even in a dry, hard and wearisome place I am given sips of water. Just enough to keep me alive, to keep me going. Just often enough to assure me that I am seen. I am known. Someone hears my heart, sees the tears -those shed and those withheld- and He will hold and sustain me. It reminds me of another verse in the Bible that says, “We are hard pressed on every side, but not crushed; perplexed, but not in despair;” (2 Corinthians 4:8) He provides relief, even in the desert. Some things die, and yet there are new things he is doing... The question is, will I perceive them? I just have this image of God providing “sips of water”, sips of relief, a million times a day in a million ways. A friend coming to the hospital on Sunday morning, my small group meeting me and praying with me there, a best friend flying in to be with me, an email, a text of encouragement, a card, a card made and sent to Nathan, lunch with someone speaking truth, women offering to be available at any moment, (and meaning it!), Jonny’s mom coming in to help ensure that at least I can be at my brother’s wedding, people loving on my daughter in my absence, friends staying at the hospital for a night at home, getting to meet with a college girl after Maddie goes to bed while I am at home one night, people cleaning, cooking, driving, praying, giving to us financially.
These verses were spoken through a prophet and they actually reference a real time where God provided real water for real people (the Israelites) in a literal desert. God is using his prophet to remind his people of his literal, tangible faithfulness to them. God is still faithful today. I believe that with all my heart. Even in the desert, He will sustain me. I can choose to dwell on the fact that I am in a desert or the fact that he is sustaining me, sip by sip. It does not feel lavish right now but the truth is, he is still upholding me. I am one of his chosen people which means I am formed, for him... My essence is his,as are my days. I was formed FOR him. Lastly, he says his chosen WILL give him praise. He is confident of the fact that he will receive praise from me, from my lips. He can be confident of this for the same reason that I can be confident that I will not be crushed or abandoned, even in the desert... Because my being sustained and giving him praise are both a result of HIS faithfulness to me, not mine to him.
Believing and praying for you!!! Keep speaking life into Nathan and believing and prophesying over Him that God WILL heal Him! Standing in agreement with you!!!
ReplyDeleteoh Jen,
ReplyDeleteI found myself going from smiling, to laughing, to tears and then returning to smiling reading this blog. I wish I could write my thoughts as eloquently as you, not my gift, obviously. All I can say to you is..your thoughts are so inspiring; your desert, so insightful. There is no one like our God.
John 7:37
On the last and greatest day of the festival, Jesus stood and said in a loud voice, “Let anyone who is thirsty come to me and drink.
Praying for miracles to happen and you will get the necessary insurance coverage that you need. Thank God for such great Christian parents and grandparents (Mark & Lu). How we miss that couple you will never know. Continued prayers for you each day.
ReplyDeleteHugs and continued prayers
ReplyDeleteMay God, to whom we forever Praise & worship, continue to uphold and sustain you and Jonny. For Nathan we pray for healing!
ReplyDeleteYou guys are amazing. Jen, the Lord is being so glorified in you right now. We will continue to pray. I have to say, too, that that picture of Madison getting a haircut made me laugh outloud. So sorry you had to miss that!
ReplyDeleteRemember, Jen, that when something blooms in the desert that it is glorious !
ReplyDeleteYou will all bloom !
From a friend of Judy Watkins