Anje, thank you for your kind words. I am not sure if you've seen this link before, but I have posted this sermon before as one to share regarding the "why". It comes from John Piper, a pastor that I respect and have heard preach when we lived in Minnesota.
Yes, we too sometimes catch up at 3 AM. We really want to protect our marriage and our family from the stress of this life, but it is a daily challenge.
I like how Mark wrote - God is good all the time, but sometimes I can taste his goodness better than at other times. Oh, so true!
And I caution you with Ian Brown's book: He is not a believer. It is a raw but honest glimpse of his journey with his son. He writes so well (he is a journalist with the Globe and Mail), and I appreicate his sincere intentions to "understand" his son and his situation. Brown's writings reminded me to read Jean Vanier's work, particularly Becoming Human. Very powerful.
Here's a link to Vanier's work: http://www.jean-vanier.org/info/en/the_message/jean_vanier_on_becoming_human
Peace for your week. Tomorrow we meet with our endocrine team to talk about Janneke's sugar issues, and I received a surprise email last night from our geneticist that encouraged me. I appreciate it when specialists affirm our concerns and questions, allowing us to feel validated in our questions regarding the circumstance. We shall see what God holds in store for us tomorrow!
Sara Pot here. So, we shall see where this takes us, eh? I hope to check in as often as I can. I hope, as time passes, that we can connect regularly to keep each other supported. Like Bev, I sent a quick update earlier, but I'll add it again since this is our official start to the forum:
My husband Ralph and I are parents to four little girls. We live in the Niagara region of Ontario, and we are very thankful for our community of family, friends, and neighbours. I must admit, I take it for granted that we live in an urban area with everything relatively close by, within walking or short driving distance. Our older two girls, 9 and 7, are your typical kids with a love for dolls (the collector's kind), jumping on the trampoline, and playing soccer. They are constantly working on some idea - developing a post office in the house, studying atlases, or creating some kind of valuable craft that I must never throw away (!).
Our younger two - Rachel (5) and Janneke (2) - are not typical. They are severely disabled, completely dependent on us for care. Our day is scheduled from 6 AM to 11 PM. They are g-tube fed, and they do not walk, talk, roll over, or experience typical milestones/developments. They are a mystery to the geneticists, so to create a sense of validation of their long list of anomalies, they are referred to as globally developmentally delayed.
Yes, I know, labels belong on cans, not on people. Yet, a diagnosis validates those feelings of "am I imagining their disablities?" and gives some sense of identity - when otherwise, you feel like to explain your kid, you need to open up their health record binder and give a long-winded speech.
Our girls do bring us joy, and we feel carried by our friends and family. Admittedly there are many days when we do feel alone -even in the city- because we don't know families with kids just like ours. I do connect with parents through our local children's centre, and that is good. It is interesting to see how other families cope with this unexpected journey of raising a child with special needs.
I have some links on my blog that often have good articles and links of their own - I particularly appreciate Ian Brown's blunt writings, and the Bloom website has great links that have both Canadian and American content. (Check my blog for those links.)
I have encountered some interesting interpretations of scripture, theology, and God's will in my experience with raising children with special needs. I have one friend who was told her daughter's anomalies were the result of her (the mom's) unforgiven sins. Another friend was told that healing oil and fasting would fix her daughter. When this didn't work, she was confused as to the healing power of God.
It is so important not to lose sight of God's sovereignty in our lives - and yet, the questions and emotions are real, eh? I ache for my friends who have been misled.
John Piper has an amazing sermon on the story in the book of John of the man born blind. I caution that it is not a sermon to listen to if you have just received a diagnosis. Piper tells of his good friend John Knight (the dad) who took nine years before he could truly accept God's will for his family and his disabled son. Those first few years of accpeting a diagnosis are not the time to debate theology - at least, that is my experience.
I can hear Rachel fussing - both girls have difficulty with bowel spasms, so I am off to work again. Peace to you all. Lamentations 3:19-23 says our sorrows will NOT consume us. There is hope because He is faithful.
It's another Sunday of taking turns staying home with Rachel and Janneke while one of us (today it's Ralph) attends church with Emily and Sophia. Janneke is easily overstimulated and then upset with the songs and loud sounds in church, and Rachel has been dealing with painful hemorrhoids again. I wonder how I can help her (and Janneke) because they both end up sitting so much. We refigured their schedule to avoid tube-feeds in church, but the constant sitting position is difficult to change.
To help Janneke deal with the sounds and people, we try to take her into the nursery, but when other kids begin to cry, it is overwhelming again. One of us ends up taking her out of church and waiting for the service to end, so we can quickly go home and make things peaceful again. I am very thankful for the Sundays when it all works!
I am now aware of how much I took for granted those Sundays before our youngest two were born when we could attend church as a family without much effort.
So, to set my mind on this day of "rest," I took some time to look over I John; I am trying to read the Bible in one year, but I started two years ago, and I am still in the month of November!
Mark, I loved your words in sharing about your daughter - her ability to face life with an amazing amount of grace, tolerating the pain without self-pity. I know I create a disability for myself when I don't feel like showing grace to others and I want to pity myself.
We were given the book Views from our Shoes on loan from a friend when Janneke was born. We then started our own family's version that we add to from time to time. At bedtime, when I sense that we've had some tough days, I ask them a couple of leading questions (how did [that] make you feel?) and then we write down our reflections together. Now it's been two years, and both Emily and Sophia like to look back on those first few pages of comments and talk about how things seem a bit different with time passing.
I hope this Sunday is a peaceful one for all of you. And if it isn't, may you be given the peace to know that tomorrow is still another day - another day when things may go smoother.
Hi, Melissa. I understand the complicated feelings that come when you are with family. I too have little ones in our extended family that share Rachel and Janneke's ages. I find the feelings of sadness (envy?) come and go. I also understand your desire to make others feeling comfortable, so much that it supercedes my willingness to be blunt or honest about my own struggles.
Sometimes it is a waste of your breath to help someone understand completely how things are really going. I pray for wisdom to say the right words - or find words that capture a bit of my reality. Trying to follow the idea of "sorrow shared is sorrow divided" and "joy shared is joy multiplied," I share what I can without feeling frustrated in the conversation. Usually you can tell if someone genuinely wants to know how things are.
I find I often say that there are good days and there are tough days - right now, the good days seem to be outnumbering the tough ones. If we are going through a rough spell, I am honest about the challenges. Sending a link to to something like the poem Trip to Holland can help family and friends understand the huge turnabout you and your husband are facing.
I hope for wisdom in your words as you share this journey with family. Grace be yours to extend to those who "don't get it" and hurt your heart.
I also hope you feel peace in your decision to return to work. It will be good to have something separate of your daughter to occupy your mind, but guard your marriage as the two of you share Savannah's care. Sometimes, as spouses, we can be like ships passing each other in the night - polite and courteous - but nothing more. May God direct your steps together as you seek the best situation for your family. And I hope you find a loving caregiver!
Have you been able to tap into any of the government programs that provide assistance for children with special needs?
Welcome to the forum - and thanks for sharing your story. I don't think man can completely explain the sovereignty of God and how he works. The words of your daughter remind me of the passage - "and a little child shall lead them" (Isaiah 9). Sometimes, the simplicity of a child's faith teaches us big people a powerful lesson about trusting.
Looking over my post, your comments, and reflecting on conversations I've had face-to-face recently, I think the idea of parent support is valid, but how it will take shape remains yet to be seen. There are some great resources linked in and through this website; I hope that creating more awareness for families with young children will expand that list of resources. (I wrote my original post in haste, so I wanted to review my intentions.)
I think back to those early days when we were adjusting to the reality of having a new baby with so many anomalies. We prepared to leave the hospital halls, and go home to.... a new normal. And our church was ready to help us, but this journey is new territory for them too. It wasn't as if there was a small group ministry at church with families like ours.
I am thankful for the network of families we have met through our children's treatment center, and I hope as part of the Body, we can create even more opportunities of support for families like ours. When families take their special needs babies home from the hospital, it would be great for their local church to be able to say, "We are here for you. And if there's something we can't help you with, there's a global network of believers walking a similar journey."
We'll wait to see what God has in store for this idea. If it sits for a bit, that's okay. Sometimes, people need time to stew. : )
Thanks for responding with your words, Mark. Your experience contains wisdom to be shared.
To everyone who is leaving a comment, thank you. I believe there is something gleaned in even the smallest stream of responses. Over time, this may lead to more response and more support.
Melissa, thank you for taking time to write. My heart aches for you as I read your words as it appears you are just beginning this journey. The challenges you explained with living in a rural community and having multiple issues with your little one make the "solution" that much more complicated.
Like Mark said, there is a grieving process that you never anticipated. Trying to figure out how you are supposed to manage the day-to-day is challenging because there is no specific manual for your child.
I have found it helpful to journal and write out - the things I miss, the things I grieve, the things I wish for, and the questions I have. Our local children's treatment centre has helped us create a timeline of goals (very simplistic) that I have used to formulate some kind of daily routine. The routine is as simple as writing out when we are feeding our girls, when we try play therapy, play music, go for a walk.... These are tasks that I took for granted with my older "normal" girls, but when I created a routine for my younger girls, it helped me balance the time throughout the day - so I wasn't lost in my worry or overwhelmedness.
I hope your church can find ways to connect with your family where you are right now -tolerating your daughter's sounds and behaviour during church, learning to help you care for her during the week, so you can step away and get a break. Is there someone in your church already expressing an interest, or would it help to connect one of your elders/ministry leaders with someone in another church? Our church is learning along with us, and we are blessed with a woman who advocates for families like us in a very compassionate and meaningful way that our congregation repsonds to and respects. I am sure she would love to connect with someone from your church.
I say all of this, knowing full well that when you read it, it might be too much wording. Maybe today is a crappy day, and you are struggling to make sense of something. Or... maybe today is a great day, and you are trying to figure out your new normal.
I hope we can begin making a connection. The more we share and communicate, the easier we can anticipate what to say and how to respond - and we can meet each other where we are at in the moment.
Peace to you.
If you are curious, I also blog: thepotfamily.blogspot.com
Posted in: Disability Support Groups: Introductions
Anje, thank you for your kind words. I am not sure if you've seen this link before, but I have posted this sermon before as one to share regarding the "why". It comes from John Piper, a pastor that I respect and have heard preach when we lived in Minnesota.
http://www.desiringgod.org/resource-library/sermons/why-was-this-child-born-blind
Yes, we too sometimes catch up at 3 AM. We really want to protect our marriage and our family from the stress of this life, but it is a daily challenge.
I like how Mark wrote - God is good all the time, but sometimes I can taste his goodness better than at other times. Oh, so true!
And I caution you with Ian Brown's book: He is not a believer. It is a raw but honest glimpse of his journey with his son. He writes so well (he is a journalist with the Globe and Mail), and I appreicate his sincere intentions to "understand" his son and his situation. Brown's writings reminded me to read Jean Vanier's work, particularly Becoming Human. Very powerful.
Here's a link to Vanier's work: http://www.jean-vanier.org/info/en/the_message/jean_vanier_on_becoming_human
Peace for your week. Tomorrow we meet with our endocrine team to talk about Janneke's sugar issues, and I received a surprise email last night from our geneticist that encouraged me. I appreciate it when specialists affirm our concerns and questions, allowing us to feel validated in our questions regarding the circumstance. We shall see what God holds in store for us tomorrow!
spot
Posted in: Disability Support Groups: Introductions
Sara Pot here. So, we shall see where this takes us, eh? I hope to check in as often as I can. I hope, as time passes, that we can connect regularly to keep each other supported. Like Bev, I sent a quick update earlier, but I'll add it again since this is our official start to the forum:
My husband Ralph and I are parents to four little girls. We live in the Niagara region of Ontario, and we are very thankful for our community of family, friends, and neighbours. I must admit, I take it for granted that we live in an urban area with everything relatively close by, within walking or short driving distance. Our older two girls, 9 and 7, are your typical kids with a love for dolls (the collector's kind), jumping on the trampoline, and playing soccer. They are constantly working on some idea - developing a post office in the house, studying atlases, or creating some kind of valuable craft that I must never throw away (!).
Our younger two - Rachel (5) and Janneke (2) - are not typical. They are severely disabled, completely dependent on us for care. Our day is scheduled from 6 AM to 11 PM. They are g-tube fed, and they do not walk, talk, roll over, or experience typical milestones/developments. They are a mystery to the geneticists, so to create a sense of validation of their long list of anomalies, they are referred to as globally developmentally delayed.
Yes, I know, labels belong on cans, not on people. Yet, a diagnosis validates those feelings of "am I imagining their disablities?" and gives some sense of identity - when otherwise, you feel like to explain your kid, you need to open up their health record binder and give a long-winded speech.
Our girls do bring us joy, and we feel carried by our friends and family. Admittedly there are many days when we do feel alone -even in the city- because we don't know families with kids just like ours. I do connect with parents through our local children's centre, and that is good. It is interesting to see how other families cope with this unexpected journey of raising a child with special needs.
I have some links on my blog that often have good articles and links of their own - I particularly appreciate Ian Brown's blunt writings, and the Bloom website has great links that have both Canadian and American content. (Check my blog for those links.)
I have encountered some interesting interpretations of scripture, theology, and God's will in my experience with raising children with special needs. I have one friend who was told her daughter's anomalies were the result of her (the mom's) unforgiven sins. Another friend was told that healing oil and fasting would fix her daughter. When this didn't work, she was confused as to the healing power of God.
It is so important not to lose sight of God's sovereignty in our lives - and yet, the questions and emotions are real, eh? I ache for my friends who have been misled.
John Piper has an amazing sermon on the story in the book of John of the man born blind. I caution that it is not a sermon to listen to if you have just received a diagnosis. Piper tells of his good friend John Knight (the dad) who took nine years before he could truly accept God's will for his family and his disabled son. Those first few years of accpeting a diagnosis are not the time to debate theology - at least, that is my experience.
Here is the link to the sermon
http://www.desiringgod.org/resource-library/sermons/why-was-this-child-born-blind
and here is the link to the interview with the dad:
http://www.desiringgod.org/resource-library/interviews/john-piper-interviews-john-knight-part-1?utm_source=Desiring+God&utm_campaign=65de85a270-RSS_EMAIL_CAMPAIGN&utm_medium=email
I can hear Rachel fussing - both girls have difficulty with bowel spasms, so I am off to work again. Peace to you all. Lamentations 3:19-23 says our sorrows will NOT consume us. There is hope because He is faithful.
In His grip and choosing Joy,
Sara Pot (aka spot)
thepotfamily.blogspot.com
Posted in: Disability Support Groups: Introductions
It's another Sunday of taking turns staying home with Rachel and Janneke while one of us (today it's Ralph) attends church with Emily and Sophia. Janneke is easily overstimulated and then upset with the songs and loud sounds in church, and Rachel has been dealing with painful hemorrhoids again. I wonder how I can help her (and Janneke) because they both end up sitting so much. We refigured their schedule to avoid tube-feeds in church, but the constant sitting position is difficult to change.
To help Janneke deal with the sounds and people, we try to take her into the nursery, but when other kids begin to cry, it is overwhelming again. One of us ends up taking her out of church and waiting for the service to end, so we can quickly go home and make things peaceful again. I am very thankful for the Sundays when it all works!
I am now aware of how much I took for granted those Sundays before our youngest two were born when we could attend church as a family without much effort.
So, to set my mind on this day of "rest," I took some time to look over I John; I am trying to read the Bible in one year, but I started two years ago, and I am still in the month of November!
Mark, I loved your words in sharing about your daughter - her ability to face life with an amazing amount of grace, tolerating the pain without self-pity. I know I create a disability for myself when I don't feel like showing grace to others and I want to pity myself.
We were given the book Views from our Shoes on loan from a friend when Janneke was born. We then started our own family's version that we add to from time to time. At bedtime, when I sense that we've had some tough days, I ask them a couple of leading questions (how did [that] make you feel?) and then we write down our reflections together. Now it's been two years, and both Emily and Sophia like to look back on those first few pages of comments and talk about how things seem a bit different with time passing.
I hope this Sunday is a peaceful one for all of you. And if it isn't, may you be given the peace to know that tomorrow is still another day - another day when things may go smoother.
spot
Posted in: Disability Support Groups: Introductions
Hi, Melissa. I understand the complicated feelings that come when you are with family. I too have little ones in our extended family that share Rachel and Janneke's ages. I find the feelings of sadness (envy?) come and go. I also understand your desire to make others feeling comfortable, so much that it supercedes my willingness to be blunt or honest about my own struggles.
Sometimes it is a waste of your breath to help someone understand completely how things are really going. I pray for wisdom to say the right words - or find words that capture a bit of my reality. Trying to follow the idea of "sorrow shared is sorrow divided" and "joy shared is joy multiplied," I share what I can without feeling frustrated in the conversation. Usually you can tell if someone genuinely wants to know how things are.
I find I often say that there are good days and there are tough days - right now, the good days seem to be outnumbering the tough ones. If we are going through a rough spell, I am honest about the challenges. Sending a link to to something like the poem Trip to Holland can help family and friends understand the huge turnabout you and your husband are facing.
I hope for wisdom in your words as you share this journey with family. Grace be yours to extend to those who "don't get it" and hurt your heart.
I also hope you feel peace in your decision to return to work. It will be good to have something separate of your daughter to occupy your mind, but guard your marriage as the two of you share Savannah's care. Sometimes, as spouses, we can be like ships passing each other in the night - polite and courteous - but nothing more. May God direct your steps together as you seek the best situation for your family. And I hope you find a loving caregiver!
Have you been able to tap into any of the government programs that provide assistance for children with special needs?
Peace to you.
spot
Posted in: Disability Support Groups: Introductions
Welcome to the forum - and thanks for sharing your story. I don't think man can completely explain the sovereignty of God and how he works. The words of your daughter remind me of the passage - "and a little child shall lead them" (Isaiah 9). Sometimes, the simplicity of a child's faith teaches us big people a powerful lesson about trusting.
I hope you have a good week.
Peace.spot
Posted in: Parent-To-Parent Support Area (Blog or Forum)
Looking over my post, your comments, and reflecting on conversations I've had face-to-face recently, I think the idea of parent support is valid, but how it will take shape remains yet to be seen. There are some great resources linked in and through this website; I hope that creating more awareness for families with young children will expand that list of resources. (I wrote my original post in haste, so I wanted to review my intentions.)
I think back to those early days when we were adjusting to the reality of having a new baby with so many anomalies. We prepared to leave the hospital halls, and go home to.... a new normal. And our church was ready to help us, but this journey is new territory for them too. It wasn't as if there was a small group ministry at church with families like ours.
I am thankful for the network of families we have met through our children's treatment center, and I hope as part of the Body, we can create even more opportunities of support for families like ours. When families take their special needs babies home from the hospital, it would be great for their local church to be able to say, "We are here for you. And if there's something we can't help you with, there's a global network of believers walking a similar journey."
We'll wait to see what God has in store for this idea. If it sits for a bit, that's okay. Sometimes, people need time to stew. : )
Peace.
spot
Posted in: Parent-To-Parent Support Area (Blog or Forum)
Thanks for responding with your words, Mark. Your experience contains wisdom to be shared.
To everyone who is leaving a comment, thank you. I believe there is something gleaned in even the smallest stream of responses. Over time, this may lead to more response and more support.
Melissa, thank you for taking time to write. My heart aches for you as I read your words as it appears you are just beginning this journey. The challenges you explained with living in a rural community and having multiple issues with your little one make the "solution" that much more complicated.
Like Mark said, there is a grieving process that you never anticipated. Trying to figure out how you are supposed to manage the day-to-day is challenging because there is no specific manual for your child.
I have found it helpful to journal and write out - the things I miss, the things I grieve, the things I wish for, and the questions I have. Our local children's treatment centre has helped us create a timeline of goals (very simplistic) that I have used to formulate some kind of daily routine. The routine is as simple as writing out when we are feeding our girls, when we try play therapy, play music, go for a walk.... These are tasks that I took for granted with my older "normal" girls, but when I created a routine for my younger girls, it helped me balance the time throughout the day - so I wasn't lost in my worry or overwhelmedness.
I hope your church can find ways to connect with your family where you are right now -tolerating your daughter's sounds and behaviour during church, learning to help you care for her during the week, so you can step away and get a break. Is there someone in your church already expressing an interest, or would it help to connect one of your elders/ministry leaders with someone in another church? Our church is learning along with us, and we are blessed with a woman who advocates for families like us in a very compassionate and meaningful way that our congregation repsonds to and respects. I am sure she would love to connect with someone from your church.
I say all of this, knowing full well that when you read it, it might be too much wording. Maybe today is a crappy day, and you are struggling to make sense of something. Or... maybe today is a great day, and you are trying to figure out your new normal.
I hope we can begin making a connection. The more we share and communicate, the easier we can anticipate what to say and how to respond - and we can meet each other where we are at in the moment.
Peace to you.
If you are curious, I also blog: thepotfamily.blogspot.com
Sara Pot