This is what over $6,000 worth of medicine and IVsin your refrigerator looks like :)
Mike update: He is home. He came home on Monday and I'm really sorry I didn't blog and tell family sooner. I'll try to do better in the future so you know where he is and can make plans to visit or send a card. He is still on IVs and will go back to Madison on Tuesday and repeat his PFTs. I will post those numbers this week. We are playing the game of; ask the doctor - call the insurance; call the insurance - ask the doctor - game. Really not much fun. Mike needs a new neub machine and cups etc. He asked at the hospital and they told him to call his insurance company. Are you kidding me. Since when do you call an insurance company to get new medical equipment. I guess I will have to do the 20 phone call thing to get it going. Another opportunity for me to practice MY patience.
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I prayed for him. But not just in the way you are probably thinking. Yes, I pray for Mike and all my kids on a regular basis keeping them close to my heart. But I mean I prayed for Mike. Let me explain.
I was 22 when I gave birth to Katie. What a blessing a child is. She was an exceptionally good baby to boot. I was blessed. She slept through the night at a couple weeks old, was perfectly healthy and happy all the time. This parenting thing was the best. I remember going into work one day a little teary eyed and bewildered. Four other women there had just had babies also and they came to work pretty ragged. One of them quipped to me, “Oh, what’s the matter, did your perfect baby finally keep you up last night for a change?” “No,” I quietly offered back, “actually, I got home at 5:30 last night and she was already asleep for the night.” “What is your problem?” the young mother quipped sarcastically but in fun, “I’d love it if my daughter slept at all!” “Well,” I continued a little choked up, “when I left this morning at 6 she still wasn’t awake. I never got to see her.”
I spent Katie’s first three months of life at home with her. It was so much fun being a new mom. One of the nights when Katie went to bed early I turned on the TV (I know shocking for me I really have watched the thing a time or two in my life) and a documentary was on. It was about special needs/handicapped children. The images are still in my mind. They gave story after story about special needs or handicapped children. They told how many of these children were physically and emotionally abused from infancy on. Exasperated parents unable to cope with the painful screams or behavior of these special children cracked under the pressure and hit, kicked, neglected and otherwise abused these children. Blind, deaf and diseased, defenseless children. I was sickened. I walked into Katie’s bedroom and peered over the crib. She was beautiful. How could anyone hurt a baby?
I went to bed that night and lay awake thinking about the images I had seen. As I was praying, before I fell asleep I can remember praying these words, “God, if you have to send a special baby down here, then give him to me, I’ll do all that I can to see that he isn’t abused." The words of a special poem I had once read ran through my mind. I couldn’t remember all the words to the prayer/poem but I knew it told of how special these kids were in God’s eyes. ------I was either just pregnant or about to get pregnant with Mike.
I remember all the screaming as Mike was slowly starving to death in my arms. I can remember winding up the baby swing and pushing the swing while he was screaming. I would talk to him to try and calm him as I hurried to feed Katie. I would finish and hurry back and pick Mike up as he was still screaming. Screaming from hunger. I can’t imagine the pain he was enduring. It almost broke me but I continued to pray. I prayed for Mike – for the relief of his pain and a diagnosis to make him better. I prayed for strength to continue to care for and comfort him. I prayed for all those other parents – my understanding was new and less judgmental. I still pray. I have not been a perfect parent but God continues to forgive me and bless me. I love being a mom. I wouldn’t trade any of it.
God continues to answer my prayers. He continues to give us just what we need when we need it. These last few years have been long and lonely. They have been full of love and laughter, sorrow and stress. And God continues to provide. Yesterday I checked in on my sister Lynn to “see how the other half lives” and we laughed really hard. Kristi sent me a joke that made me laugh until I cried. I got to go to a party with a bunch of people I work with and got to talk with real live adults. It was fun. John and Sue were wonderful hosts – they had a band and food and cake. It was awesome. Thank you! Thank you Sara and Nicki and Pete for encouraging me to go. I am refueled and full. I am grateful for all my blessings. I got a few emails from people who care and share their love. I am humbled. Thank you. Each and every one of you – thank you for taking the time to bless my life.
And in closing I will share the poem/prayer. When Mike was diagnosed with Cystic Fibrosis they told me he was considered to be handicapped because he had a fatal disease. I remembered the poem – I went on a search that took more than a year to find it. I no longer have the little card it came on, but the words are written on my heart. So from memory here is Heaven’s Child (sorry if I miss a few words – the memory isn’t as good as it used to be ;) Hope this blesses someone today – it did me:
Heaven’s Child
A meeting was held quite far from earth
It’s time again for another birth
Said the Angels to the Lord above
This special child will need much love.
He may not walk or laugh or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped.
So let’s be careful where he’s sent
We want his life to be content
Please Lord help us find the parents who
Will do a special job for you.
They may not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they’ll know the privilege given
In caring for this gift from heaven
Their precious charge so meek and mild
Is Heaven’s Very Special Child.
If you are caring for a “Heaven’s Child” – God bless you richly in your walk. Remember the words of 1 Corinthians 10:13 “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear.”
Thank you God, for entrusting me with this Heaven’s Child - for giving me the guidance and strength to continue to serve You. Amen.
Shalom.
****************************
I prayed for him. But not just in the way you are probably thinking. Yes, I pray for Mike and all my kids on a regular basis keeping them close to my heart. But I mean I prayed for Mike. Let me explain.
I was 22 when I gave birth to Katie. What a blessing a child is. She was an exceptionally good baby to boot. I was blessed. She slept through the night at a couple weeks old, was perfectly healthy and happy all the time. This parenting thing was the best. I remember going into work one day a little teary eyed and bewildered. Four other women there had just had babies also and they came to work pretty ragged. One of them quipped to me, “Oh, what’s the matter, did your perfect baby finally keep you up last night for a change?” “No,” I quietly offered back, “actually, I got home at 5:30 last night and she was already asleep for the night.” “What is your problem?” the young mother quipped sarcastically but in fun, “I’d love it if my daughter slept at all!” “Well,” I continued a little choked up, “when I left this morning at 6 she still wasn’t awake. I never got to see her.”
I spent Katie’s first three months of life at home with her. It was so much fun being a new mom. One of the nights when Katie went to bed early I turned on the TV (I know shocking for me I really have watched the thing a time or two in my life) and a documentary was on. It was about special needs/handicapped children. The images are still in my mind. They gave story after story about special needs or handicapped children. They told how many of these children were physically and emotionally abused from infancy on. Exasperated parents unable to cope with the painful screams or behavior of these special children cracked under the pressure and hit, kicked, neglected and otherwise abused these children. Blind, deaf and diseased, defenseless children. I was sickened. I walked into Katie’s bedroom and peered over the crib. She was beautiful. How could anyone hurt a baby?
I went to bed that night and lay awake thinking about the images I had seen. As I was praying, before I fell asleep I can remember praying these words, “God, if you have to send a special baby down here, then give him to me, I’ll do all that I can to see that he isn’t abused." The words of a special poem I had once read ran through my mind. I couldn’t remember all the words to the prayer/poem but I knew it told of how special these kids were in God’s eyes. ------I was either just pregnant or about to get pregnant with Mike.
I remember all the screaming as Mike was slowly starving to death in my arms. I can remember winding up the baby swing and pushing the swing while he was screaming. I would talk to him to try and calm him as I hurried to feed Katie. I would finish and hurry back and pick Mike up as he was still screaming. Screaming from hunger. I can’t imagine the pain he was enduring. It almost broke me but I continued to pray. I prayed for Mike – for the relief of his pain and a diagnosis to make him better. I prayed for strength to continue to care for and comfort him. I prayed for all those other parents – my understanding was new and less judgmental. I still pray. I have not been a perfect parent but God continues to forgive me and bless me. I love being a mom. I wouldn’t trade any of it.
God continues to answer my prayers. He continues to give us just what we need when we need it. These last few years have been long and lonely. They have been full of love and laughter, sorrow and stress. And God continues to provide. Yesterday I checked in on my sister Lynn to “see how the other half lives” and we laughed really hard. Kristi sent me a joke that made me laugh until I cried. I got to go to a party with a bunch of people I work with and got to talk with real live adults. It was fun. John and Sue were wonderful hosts – they had a band and food and cake. It was awesome. Thank you! Thank you Sara and Nicki and Pete for encouraging me to go. I am refueled and full. I am grateful for all my blessings. I got a few emails from people who care and share their love. I am humbled. Thank you. Each and every one of you – thank you for taking the time to bless my life.
And in closing I will share the poem/prayer. When Mike was diagnosed with Cystic Fibrosis they told me he was considered to be handicapped because he had a fatal disease. I remembered the poem – I went on a search that took more than a year to find it. I no longer have the little card it came on, but the words are written on my heart. So from memory here is Heaven’s Child (sorry if I miss a few words – the memory isn’t as good as it used to be ;) Hope this blesses someone today – it did me:
Heaven’s Child
A meeting was held quite far from earth
It’s time again for another birth
Said the Angels to the Lord above
This special child will need much love.
He may not walk or laugh or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped.
So let’s be careful where he’s sent
We want his life to be content
Please Lord help us find the parents who
Will do a special job for you.
They may not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they’ll know the privilege given
In caring for this gift from heaven
Their precious charge so meek and mild
Is Heaven’s Very Special Child.
If you are caring for a “Heaven’s Child” – God bless you richly in your walk. Remember the words of 1 Corinthians 10:13 “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear.”
Thank you God, for entrusting me with this Heaven’s Child - for giving me the guidance and strength to continue to serve You. Amen.
Shalom.
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