Life has been a crazy, chaotic whirlwind of craziness and chaos lately. Our little Ham Sammich (a boy) was born back in April, had his first open heart surgery at 6 days old, spent another 3 1/2 weeks in the PICU (Pediatric Intensive Care Unit), got discharged, spent about one week at home, got readmitted to the regular hospital floor, then transferred to the PICU once again about 5 days after that. And that is where he still is today.
During that time, I've learned and felt so many things. I now regularly get asked for directions to various parts of the hospital (I think I have developed that worn hospitalish look that shows I've been here too long), and I've gotten to know almost all the day nurses in the PICU. In fact, I've been hugged or patted by almost all of them, since the little guy has given me reason to worry to tears about him far too many times.
The other day, after tallying up Ham Sammich's inpatient days to over 40, compared to the 7 outpatient days, I felt this huge weight of despair wash over me. I realized he will soon no longer be considered a newborn, and I started thinking of all those experiences I'd missed out on during his time in the hospital. He's only had a handful of real baths--all the others have been sponge baths in a hospital bed. Those 7 days he was home were the only days he has not been stuck by a needle or had a line running through a vein or artery. The days I've not been able to hold him outnumber the days I have. Even though we only bought him a handful of newborn-sized clothes, he's only worn them a few times each--and one onesie hasn't been worn at all yet. Since I procrastinated during his short time at home, I missed out on getting a picture of all three kiddos together. He has been on medication since moments after his birth, and possibly will be on it for the rest of his life. He has spent nearly every day in a place where people die on a daily basis. A place where children are wheeled down the halls on stretchers as their parents follow close behind--mothers with their arms folded across their chests and tears running down their faces as fathers stoically hold the tears in and attempt to be strong for the both of them. A place where you're more likely to hear children and babies crying as they endure another procedure than hear them laughing. A place where parents are regularly asked to leave their children's room so they don't have to watch their child undergo those procedures.
And after thinking of all those terrible things all at once, I realized I hadn't actually stopped to think about them all before. I'd managed to go over 6 weeks without once considering all those things at once. Yes, one or two of them had crept into my mind once in a while, but I hadn't noticed how horribly depressing this whole situation really is. In fact, I've spent a good portion of these days laughing and smiling and talking. I've still been able to enjoy hobbies (in fact, I've taken advantage of all that extra time to knit and read in the quiet aloneness of the hospital room) and food and sleep (when I can get it). I've discovered that I don't have to be at the hospital all the time. In fact, I've learned that I can't be there all the time. I need to leave sometimes. I need to get fresh air and sunshine and listen to something other than the constant ringing/beeping/chirping of monitors and alarms. I've accepted the fact that--unlike with my other two kids--I am not the ideal and best-qualified caregiver for my baby. My instincts with him are often right on, but my skills and knowledge are severely lacking. With him, I have to back off and let the nurses tend to a lot of his needs, while I have to be satisfied with petting his head and telling him once again, "You're ok; it's almost over now." It's a weird and surprising way of life, but we are adapting.
While going through this, people keep telling us we're so strong or they don't know how we're doing it. The truth is, we're not strong, and we don't have any choice about doing it. He is our baby, our very much loved baby, and he's worth every bit of stress or fear or worry. Parents who love their babies are willing to do whatever they have to to take care of them--whether it's rocking a screaming, colicky baby at 3am or sitting by their hospital bed for hours at a time. Don't pity us, because I'm sure most of you would do the exact same thing if you were in this situation. Pray for us, but don't pity us. Our baby is still alive, even though babies like him didn't have a chance 30 years ago. We get to see him every day, even if we can't hold him. And while we don't get to be his main caregivers quite yet, we have the privilege to make these nurses, respiratory therapists, doctors, chaplains, and other staff a part of our family.
Friday, June 14, 2013
Monday, April 15, 2013
Walking the Unknown Road
For those of you following my journey as a heart momma, things are moving along just fine. We're in our final countdown (cue the magical entrance of Gob Bluth if you're an Arrested Development fan) until the moment we get to meet our precious little one and see what plans God has for us. At this point, I'm not taking the doctors' words too much to heart, because I know God knows more than even the best people in the medical field. I believe that doctors can only go by what they see now and what they've seen or studied about past cases, so they have a limited viewpoint. God, on the other hand, sees everything and knows for sure what's going to happen, not just what has the most likelihood of happening. At the same time, it's really hard to sit there in office after office, being told about scary surgical procedures and the risks that come with them, and all sorts of statistics that aren't nearly as comforting as I'd like them to be. I understand that this path might not be as full of rainbows and daisies as I'd like, but I believe that God is leading us to the place that will bring Him the most glory. It's not my job to be in control or to understand, but it's my job to trust that He does.
I also want to say that no matter what happens--good or bad, miraculous or not--I have absolutely no regrets about this baby or this pregnancy. When we were first given the CHD diagnosis, the option of "termination" (aka killing our baby because it wasn't perfect enough) was presented to us. I know that some people choose that option, because it's easier, less expensive, or--as some try to argue--more humane than risking any suffering on the baby's part. I disagree. I know this baby deserves every chance at survival, and I will not stop fighting as hard as I can to make that happen. Whether this baby lives a long healthy life or a short painful one, this baby has a purpose. This baby's life has been so precious already, and I can't imagine making the choice to intentionally cut it shorter than God intended. I don't know where this road will lead us, but I can rest in the knowledge that our baby has been loved and wanted for every single moment of his or her existence. And while my motherly heart is nearly bursting at the seams with love for my little one, I know that God loves him or her even more than I ever could.
You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You! Trust in the Lord always, for the Lord God is the Eternal Rock. Isaiah 26:3&4
I also want to say that no matter what happens--good or bad, miraculous or not--I have absolutely no regrets about this baby or this pregnancy. When we were first given the CHD diagnosis, the option of "termination" (aka killing our baby because it wasn't perfect enough) was presented to us. I know that some people choose that option, because it's easier, less expensive, or--as some try to argue--more humane than risking any suffering on the baby's part. I disagree. I know this baby deserves every chance at survival, and I will not stop fighting as hard as I can to make that happen. Whether this baby lives a long healthy life or a short painful one, this baby has a purpose. This baby's life has been so precious already, and I can't imagine making the choice to intentionally cut it shorter than God intended. I don't know where this road will lead us, but I can rest in the knowledge that our baby has been loved and wanted for every single moment of his or her existence. And while my motherly heart is nearly bursting at the seams with love for my little one, I know that God loves him or her even more than I ever could.
You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You! Trust in the Lord always, for the Lord God is the Eternal Rock. Isaiah 26:3&4
Thursday, April 4, 2013
Building Faith {Part 2}
If you remember, in my last blog, I asked for some suggestions of Bible verses that have helped you through situations and times when your faith was challenged. Since then, my faith has been challenged immensely, as doctor visits increase in frequency and the harsh reality of our situation keeps getting more harsh. In other words, I've been finding it very difficult to hold onto God's promises instead of the statistics and possible outcomes the doctors have been telling me about.
The verses you shared with me, along with the ones I found myself, have been a huge source of hope and comfort for me, and I hope a compilation of them will benefit others as well. To prevent typos and other such errors, I'm going to copy and paste the verses from Bible Gateway rather than typing them all out myself. I'll be handwriting them for my own portable copy, since writing helps me with my memorization as well.
*I love how bold and encouraging this Psalm is, and verse 7 in particular seemed to jump out at me this time. We've been plagued with the odds of this or that happening all throughout this situation, so that verse really shows that odds don't have to be in our favor in order for God to take care of us and keep us safe.*
6 Then he spit on the ground, made mud with the saliva, and spread the mud over the blind man’s eyes. 7 He told him, “Go wash yourself in the pool of Siloam” (Siloam means “sent”). So the man went and washed and came back seeing!
The verses you shared with me, along with the ones I found myself, have been a huge source of hope and comfort for me, and I hope a compilation of them will benefit others as well. To prevent typos and other such errors, I'm going to copy and paste the verses from Bible Gateway rather than typing them all out myself. I'll be handwriting them for my own portable copy, since writing helps me with my memorization as well.
Psalm 91
1 Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
2 This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.
3 For he will rescue you from every trap
and protect you from deadly disease.
4 He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
5 Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.
7 Though a thousand fall at your side,
though ten thousand are dying around you,
these evils will not touch you.
8 Just open your eyes,
and see how the wicked are punished.
will find rest in the shadow of the Almighty.
2 This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.
3 For he will rescue you from every trap
and protect you from deadly disease.
4 He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
5 Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.
7 Though a thousand fall at your side,
though ten thousand are dying around you,
these evils will not touch you.
8 Just open your eyes,
and see how the wicked are punished.
9 If you make the Lord your refuge,
if you make the Most High your shelter,
10 no evil will conquer you;
no plague will come near your home.
11 For he will order his angels
to protect you wherever you go.
12 They will hold you up with their hands
so you won’t even hurt your foot on a stone.
13 You will trample upon lions and cobras;
you will crush fierce lions and serpents under your feet!
if you make the Most High your shelter,
10 no evil will conquer you;
no plague will come near your home.
11 For he will order his angels
to protect you wherever you go.
12 They will hold you up with their hands
so you won’t even hurt your foot on a stone.
13 You will trample upon lions and cobras;
you will crush fierce lions and serpents under your feet!
14 The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
15 When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
16 I will reward them with a long life
and give them my salvation.”
I will protect those who trust in my name.
15 When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
16 I will reward them with a long life
and give them my salvation.”
*I love how bold and encouraging this Psalm is, and verse 7 in particular seemed to jump out at me this time. We've been plagued with the odds of this or that happening all throughout this situation, so that verse really shows that odds don't have to be in our favor in order for God to take care of us and keep us safe.*
Proverbs 3:5
5 Trust in the Lord with all your heart;
do not depend on your own understanding.
do not depend on your own understanding.
1 Peter 5:7
7 Give all your worries and cares to God, for he cares about you.
Psalm 56:3
3 But when I am afraid,
I will put my trust in you.
I will put my trust in you.
*The following two verses have been a huge deal for me, as they are teaching me to see things as being tools for God's glory rather than being all about me. I'm learning to keep my eyes on Him (like Peter trying to walk on water) rather than focusing so much on myself or my circumstances.*
John 12:27-28
27 “Now my soul is deeply troubled. Should I pray, ‘Father, save me from this hour’? But this is the very reason I came! 28 Father, bring glory to your name.”
Then a voice spoke from heaven, saying, “I have already brought glory to my name, and I will do so again.”
John 9:1-3, 6-7
9 As Jesus was walking along, he saw a man who had been blind from birth. 2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”
3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.6 Then he spit on the ground, made mud with the saliva, and spread the mud over the blind man’s eyes. 7 He told him, “Go wash yourself in the pool of Siloam” (Siloam means “sent”). So the man went and washed and came back seeing!
Psalm 34:18
18 The Lord is close to the brokenhearted;
he rescues those whose spirits are crushed.
he rescues those whose spirits are crushed.
Matthew 17:20
20 “You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible."
Luke 18:1-8
18 One day Jesus told his disciples a story to show that they should always pray and never give up. 2 “There was a judge in a certain city,” he said, “who neither feared God nor cared about people. 3 A widow of that city came to him repeatedly, saying, ‘Give me justice in this dispute with my enemy.’ 4 The judge ignored her for a while, but finally he said to himself, ‘I don’t fear God or care about people, 5 but this woman is driving me crazy. I’m going to see that she gets justice, because she is wearing me out with her constant requests!’”
6 Then the Lord said, “Learn a lesson from this unjust judge. 7 Even he rendered a just decision in the end. So don’t you think God will surely give justice to his chosen people who cry out to him day and night? Will he keep putting them off? 8 I tell you, he will grant justice to them quickly! But when the Son of Man returns, how many will he find on the earth who have faith?”
Hebrews 10:23
23 Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.
Isaiah 26:3
3 You will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!
all who trust in you,
all whose thoughts are fixed on you!
Romans 4:20
20 Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God.
Psalm 31:24
24 So be strong and courageous,
all you who put your hope in the Lord!
all you who put your hope in the Lord!
2 Timothy 1:7
7 For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.
Exodus 14:14
14 The Lord himself will fight for you. Just stay calm.”
Romans 5:5
5 And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.
Habakkuk 3:2
2 I have heard all about you, Lord.
I am filled with awe by your amazing works.
In this time of our deep need,
help us again as you did in years gone by.
And in your anger,
remember your mercy.
I am filled with awe by your amazing works.
In this time of our deep need,
help us again as you did in years gone by.
And in your anger,
remember your mercy.
Psalm 55:22
22 Give your burdens to the Lord,
and he will take care of you.
He will not permit the godly to slip and fall.
and he will take care of you.
He will not permit the godly to slip and fall.
Romans 12:12
12 Rejoice in our confident hope. Be patient in trouble, and keep on praying.
I think that's a pretty good list to get us started, although I could seriously post about half of the Bible in here if I wanted to be more thorough. Thanks to all of you who participated in sharing faith-building verses with me! I hope I didn't leave any out, and if I did--or if you have more you'd like to share--please leave them in the comments section below. There is also a great list of 12 Bible Verses for When You Feel Like Giving Up that goes along with these, if you'd like to read or print out some more.
In the meantime, I'll forewarn you that my blogging might be inconsistent over the next few months. My time keeps getting more consumed with other things and preparations (and trying to finish the New Testament, which I'm making huge progress on), and it's been difficult for me to find non-hyper-emotional moments to focus on this blog of mine.
I think that's a pretty good list to get us started, although I could seriously post about half of the Bible in here if I wanted to be more thorough. Thanks to all of you who participated in sharing faith-building verses with me! I hope I didn't leave any out, and if I did--or if you have more you'd like to share--please leave them in the comments section below. There is also a great list of 12 Bible Verses for When You Feel Like Giving Up that goes along with these, if you'd like to read or print out some more.
In the meantime, I'll forewarn you that my blogging might be inconsistent over the next few months. My time keeps getting more consumed with other things and preparations (and trying to finish the New Testament, which I'm making huge progress on), and it's been difficult for me to find non-hyper-emotional moments to focus on this blog of mine.
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