Hi, my name is Janet, and this is SIMON'S STORY (so far)!
I left Fraser (my husband) to it. He seemed tired and I knew if he had the morning to himself he'd feel better by lunchtime… "Don't worry about the dishes," I said. It would be nice to come home to a clean kitchen and I was hopeful, although I knew it didn't matter… "have a quiet time, spend some time with The Lord" I said. Then I was gone.
When I returned several hours later the house was much the same; dishes on the bench, papers on the floor, Fraser unshaven but looking quite relaxed and his eyes were alight. He'd just spent the morning with God and came up with what he thought was a word of prophecy. …about a forthcoming child or children. We already had 3 lovely daughters aged 3, 4½, and 6 and I had been feeling rather pleased with life and much freer than I had in ages …much more of the old Janet coming through and not so tired. Another baby, well, I had not closed the option entirely. If we conceived this coming week we would have a boy and his name would be Simon and he would be a blessing. (There was also mention of another son .... but that was too much to contemplate just then.)
This then is my account of the fulfilment of God's prophecy in our lives to date. How I had to trust my husband and his belief that he had heard God correctly and how I had to step out in faith myself.
As it happened we did conceive that week and later gave birth to a boy and, yes, we called him Simon…but it wasn't as easy as that! Things went wrong from about 30 weeks pregnant and the blessing we thought that was coming was far different than what we received. My 18 week scan appeared normal and we were pleased with the way things were going. In my 3rd trimester I seemed much bigger than I should be and I was getting very short of breath and tired, which I put it down to my age, (33) and the fact that I had had 3 big babies. At 32 weeks I was the size of a term pregnancy even though I had 8 weeks to go. The baby's movements were less obvious and one day I felt an enormous movement, then nothing.
Fraser and I were arguing a lot which was probably the result of tiredness and he asked me if I thought I should go up to the maternity hospital to have a monitoring of the fetal heart as the baby's movements had slackened off. When I said yes, he knew that maybe something was up. I took myself up to maternity and my midwife took a tracing. Something wasn't right and she faxed the result through to the nearest base Hospital and I went home. In the morning I was called to have another tracing and when that was faxed through I was immediately told to pack my bags and go straight over to the base hospital.
What on earth could be wrong? Maybe the cord around the neck? I said to a close friend, who was looking after my 3 year old, that it'll only be a check and I would be home shortly. Pregnancies are usually normal and nothing too bad could happen to me…. I just had no idea! I cancelled a meeting and made some arrangements and then Fraser took me over at about 11 am.
Then the wait, the tracings repeated, then more waiting, in that little curtained room. The pressure in my tummy was very great and I felt anxious and breathless. Then a scan…then the words from the technician "look there, look there… oh gee" then a lot of whispers in the corner. Apparently there was fluid everywhere. The baby had too much fluid around, and was bloated with too much fluid inside his tissues also. Over and over my tummy went the gel and the scanner machine, over and over to see more of the picture and without further ado we were to sit again and wait. I forget now what the technician said but I distinctly remember knowing that something was dreadfully wrong and the obstetrician saying that the baby was dying unless we could deliver him as soon as possible. I was put on 2 days of steroids to try and prepare Simon's lungs and I was due for caesarean section on Friday. In the meantime he was monitored and his condition seemed to be getting worse.
Friday came and I was terrified. We had been told that Simon only had a small chance of surviving but The Lord had given us a scripture as we waited … Isaiah 43 v 1-3
The scripture came to mind over and over again … surely Simon would be fine because, yes, we believed, we had faith, we held firm.
Despite my faith I was totally fearful. The anaesthetic… I felt paralysed…how much pain? No thought about the baby… after all, God was looking after him. I remember looking at my legs but not feeling them. It was all that I could do to stop myself from screaming …. Panic was just there, just at my elbow.
I clung emotionally to my midwife, it was Fraser's job to make sure the doctors did the right thing and Fraser could look out for Simon when he arrived. We were told that Simon would look awful and I didn't want to look. I had enough to just get through this.
Some peaceful Christian music was put on and once the caesarian started it was all go. I contained my panic in the music and I focused on the vent on the ceiling. They struggled for the baby, he was so bloated they had to use forceps to remove him from the womb… and then whoosh, gurgle, relief, pain, panic, noise, go go go! The baby was out.
I felt sick, I was sick, I threw up, I thought I would pass out. As they sewed me up there were doctors everywhere, over me but especially around my baby. Somewhere under all those doctors was my baby just born, fighting, fighting for life. There was fluid everywhere. He had a condition called fetal hydrops and his face was so swollen with fluid that it was a miracle that they could even get the tube down into his lungs to assist his breathing. They inserted numerous chest drains straight through his chest wall to remove as much of the fluid as they could to allow his lungs to expand. Even though he weighed over 3 kg at only 32 weeks gestation, 2kg of that was just fluid.
Simon was whipped away to the intensive neonatal unit and I didn't see him that day… but it was over and the horror and my fears subsided. Simon was still alive at least for now.
The next day I was taken down to the intensive care newborn unit in a wheelchair, feeling sick and faint… and there he was, like a balloon, black and blue from bruising with a crop of black hair and a coat of fine body hair. Toes like bubbles, testicles like plastic balls, and medical lines and machines everywhere doing their stuff.
Days blended into weeks and as I got stronger I went down to the unit more and more. Simon improved each day. We had found out that he had a small chromosomal marker, that he did not have Down's syndrome but like Down's syndrome he had extra chromosomal material, which usually meant some degree of mental retardation. No one could tell us for sure what his outcome would be and we clung to the prophecy that God had given us "that he was going to be a blessing to us".
Simon nearly died twice in the 10 weeks he was in the intensive care unit and twice we were called to say our farewells. Despite all odds he pulled through and eventually we were able to bring Simon home.
Simon is now 9 years old. He goes to school full time and spends most of the day in a special unit for children with cerebral palsy. Simon has spastic diplegia and has difficulty walking which has been improved dramatically this year with surgery. He has little fine motor control of his hands. He has quite severe mental retardation and will never be able to be independent of a carer. He still wears nappies. He talks and sings and mostly his vocab is clear but his conversation is limited.
Yet Simon enjoys life. He loves church and absorbs the worship. He joins in his own way and smiles readily. He loves to dance to the Lord and is not worried what others think. He often calls out his praise to Jesus. He's very sensitive to atmosphere and can pick people's character easily. He at times seems to walk with angels and laughs for no obvious reason.
His life has complicated ours beyond measure. We spend most days caring for him. He has suffered with severe asthma, he has put both arms into a hot oven, fallen down flights of stairs, been physically abused on the school bus yet this does not seem to deter him. His life is uncluttered by worldly concerns and his needs are essentially simple.
Luke 9 v 48
We as a family have struggled, living with a severely disabled person yet we have learnt more about God and more about serving other human beings than any other event in our lives. So often we had to remind ourselves of the following:
Matthew 20 v 26
Through the intensity, grief, weariness, frustration, hard work we have seen the hand of God working in our lives. Has Simon been a blessing to us? Not the one we thought we were getting but certainly one which is greater than we ever could imagine. One that will last way beyond eternity.
The prophecy Fraser received: "Because I love you so much I am going to bless you with a son, 2 sons. Make love to your wife this weekend and she will conceive. His name will be Simon and he will be a great blessing. Your second son will be like a Jonathan."
Simon's name means hearing and believing. Jonathan means gracious gift of God. Three years ago God blessed us with our 2nd son. We called him Jonathan and even though he can run and jump and talk and do everything that every other normal child can do we are reminded daily by Simon that: "He does not delight in the strength of the horse. He takes no pleasure in the legs of a man. The Lord takes pleasure in those who fear him. In those who hope in his mercy" Psalm 147 v10, 11.
Our prayer is that abled or disabled, our children will fear the Lord.
I left Fraser (my husband) to it. He seemed tired and I knew if he had the morning to himself he'd feel better by lunchtime… "Don't worry about the dishes," I said. It would be nice to come home to a clean kitchen and I was hopeful, although I knew it didn't matter… "have a quiet time, spend some time with The Lord" I said. Then I was gone.
When I returned several hours later the house was much the same; dishes on the bench, papers on the floor, Fraser unshaven but looking quite relaxed and his eyes were alight. He'd just spent the morning with God and came up with what he thought was a word of prophecy. …about a forthcoming child or children. We already had 3 lovely daughters aged 3, 4½, and 6 and I had been feeling rather pleased with life and much freer than I had in ages …much more of the old Janet coming through and not so tired. Another baby, well, I had not closed the option entirely. If we conceived this coming week we would have a boy and his name would be Simon and he would be a blessing. (There was also mention of another son .... but that was too much to contemplate just then.)
This then is my account of the fulfilment of God's prophecy in our lives to date. How I had to trust my husband and his belief that he had heard God correctly and how I had to step out in faith myself.
As it happened we did conceive that week and later gave birth to a boy and, yes, we called him Simon…but it wasn't as easy as that! Things went wrong from about 30 weeks pregnant and the blessing we thought that was coming was far different than what we received. My 18 week scan appeared normal and we were pleased with the way things were going. In my 3rd trimester I seemed much bigger than I should be and I was getting very short of breath and tired, which I put it down to my age, (33) and the fact that I had had 3 big babies. At 32 weeks I was the size of a term pregnancy even though I had 8 weeks to go. The baby's movements were less obvious and one day I felt an enormous movement, then nothing.
Fraser and I were arguing a lot which was probably the result of tiredness and he asked me if I thought I should go up to the maternity hospital to have a monitoring of the fetal heart as the baby's movements had slackened off. When I said yes, he knew that maybe something was up. I took myself up to maternity and my midwife took a tracing. Something wasn't right and she faxed the result through to the nearest base Hospital and I went home. In the morning I was called to have another tracing and when that was faxed through I was immediately told to pack my bags and go straight over to the base hospital.
Then the wait, the tracings repeated, then more waiting, in that little curtained room. The pressure in my tummy was very great and I felt anxious and breathless. Then a scan…then the words from the technician "look there, look there… oh gee" then a lot of whispers in the corner. Apparently there was fluid everywhere. The baby had too much fluid around, and was bloated with too much fluid inside his tissues also. Over and over my tummy went the gel and the scanner machine, over and over to see more of the picture and without further ado we were to sit again and wait. I forget now what the technician said but I distinctly remember knowing that something was dreadfully wrong and the obstetrician saying that the baby was dying unless we could deliver him as soon as possible. I was put on 2 days of steroids to try and prepare Simon's lungs and I was due for caesarean section on Friday. In the meantime he was monitored and his condition seemed to be getting worse.
Friday came and I was terrified. We had been told that Simon only had a small chance of surviving but The Lord had given us a scripture as we waited … Isaiah 43 v 1-3
NAS
, Fear not, for I have redeemed you; I have called you by name; you are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not over flow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you. For I am the Lord God, The Holy One of Israel, your Saviour.
The scripture came to mind over and over again … surely Simon would be fine because, yes, we believed, we had faith, we held firm.
Despite my faith I was totally fearful. The anaesthetic… I felt paralysed…how much pain? No thought about the baby… after all, God was looking after him. I remember looking at my legs but not feeling them. It was all that I could do to stop myself from screaming …. Panic was just there, just at my elbow.
I clung emotionally to my midwife, it was Fraser's job to make sure the doctors did the right thing and Fraser could look out for Simon when he arrived. We were told that Simon would look awful and I didn't want to look. I had enough to just get through this.
Some peaceful Christian music was put on and once the caesarian started it was all go. I contained my panic in the music and I focused on the vent on the ceiling. They struggled for the baby, he was so bloated they had to use forceps to remove him from the womb… and then whoosh, gurgle, relief, pain, panic, noise, go go go! The baby was out.
I felt sick, I was sick, I threw up, I thought I would pass out. As they sewed me up there were doctors everywhere, over me but especially around my baby. Somewhere under all those doctors was my baby just born, fighting, fighting for life. There was fluid everywhere. He had a condition called fetal hydrops and his face was so swollen with fluid that it was a miracle that they could even get the tube down into his lungs to assist his breathing. They inserted numerous chest drains straight through his chest wall to remove as much of the fluid as they could to allow his lungs to expand. Even though he weighed over 3 kg at only 32 weeks gestation, 2kg of that was just fluid.
Simon was whipped away to the intensive neonatal unit and I didn't see him that day… but it was over and the horror and my fears subsided. Simon was still alive at least for now.
The next day I was taken down to the intensive care newborn unit in a wheelchair, feeling sick and faint… and there he was, like a balloon, black and blue from bruising with a crop of black hair and a coat of fine body hair. Toes like bubbles, testicles like plastic balls, and medical lines and machines everywhere doing their stuff.
Days blended into weeks and as I got stronger I went down to the unit more and more. Simon improved each day. We had found out that he had a small chromosomal marker, that he did not have Down's syndrome but like Down's syndrome he had extra chromosomal material, which usually meant some degree of mental retardation. No one could tell us for sure what his outcome would be and we clung to the prophecy that God had given us "that he was going to be a blessing to us".
Simon nearly died twice in the 10 weeks he was in the intensive care unit and twice we were called to say our farewells. Despite all odds he pulled through and eventually we were able to bring Simon home.
Simon is now 9 years old. He goes to school full time and spends most of the day in a special unit for children with cerebral palsy. Simon has spastic diplegia and has difficulty walking which has been improved dramatically this year with surgery. He has little fine motor control of his hands. He has quite severe mental retardation and will never be able to be independent of a carer. He still wears nappies. He talks and sings and mostly his vocab is clear but his conversation is limited.
Yet Simon enjoys life. He loves church and absorbs the worship. He joins in his own way and smiles readily. He loves to dance to the Lord and is not worried what others think. He often calls out his praise to Jesus. He's very sensitive to atmosphere and can pick people's character easily. He at times seems to walk with angels and laughs for no obvious reason.
His life has complicated ours beyond measure. We spend most days caring for him. He has suffered with severe asthma, he has put both arms into a hot oven, fallen down flights of stairs, been physically abused on the school bus yet this does not seem to deter him. His life is uncluttered by worldly concerns and his needs are essentially simple.
Luke 9 v 48
NIV
says… whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is the least among you all… he is the greatest.
We as a family have struggled, living with a severely disabled person yet we have learnt more about God and more about serving other human beings than any other event in our lives. So often we had to remind ourselves of the following:
Matthew 20 v 26
NIV
says… Instead whoever wants to become great among you must be your servant and whoever wants to be first must be your slave… just as the Son of Man did not come to be served but to serve and give his life as a ransom for many.
Through the intensity, grief, weariness, frustration, hard work we have seen the hand of God working in our lives. Has Simon been a blessing to us? Not the one we thought we were getting but certainly one which is greater than we ever could imagine. One that will last way beyond eternity.
The prophecy Fraser received: "Because I love you so much I am going to bless you with a son, 2 sons. Make love to your wife this weekend and she will conceive. His name will be Simon and he will be a great blessing. Your second son will be like a Jonathan."
Our prayer is that abled or disabled, our children will fear the Lord.
