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.
Thanks for taking time to write in - and introduce us to your family. I wish we could sit for a coffee somewhere...
Interesting to read your husband's parallel with Abraham and Isaac since I just finished Carol Kent's book "When I Lay My Isaac Down." It was a good read in the sense that it reminded me of how much I need to lay down and let go of the things that are dearest to me - my dreams for my kids, my hopes for my life, my family, etc. Other parts of the book did not relate to my life, but it was still good to read. (My favourite book continues to be The Boy in the Moon by Ian Brown.)
It also reminded me of the rut some of us find ourselves in when we want to say to the Lord - You owe me a good life, health, normal kids, sleep.... God doesn't owe us anything. Instead He gives us the grace and strength through Him and because of His sacrifice.
But that doesn't always comfort me in the middle of the night when I am dealing with medical issues after very little sleep.
Yet, I too hold to the faith that God will provide and He will be present. There are definitely seasons of joy and sorrow with this journey. Sometimes, I find that faith is all I can cling to - while crying out for Him to be present in the room, to take away the worries.
I ache that we can't attend church often as a family. We hope this will change. I am thankful our church family still reaches out to us, and we hope there remains a connection. We need each other!
I love your quiet sense of humour - if that is what it is with the comment about vanilla flavoured custard. : ) I am sure there is a story behind that comment.
Let us keep in touch through the forum, and I hope to keep writing. Sometimes it takes a week or two for me to respond, but I do read the entries. We are in a trying spot right now with Janneke's and now Rachel's blood sugar issues, so we have a number of appointments to attend. I hope we can find some resolution to the problem, but it is not seeming like an easy dilemna.
Peace for your day - and strength for the night ahead. We also sleep intermittently at night, and that wears down the body and the soul quickly.
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!
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
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: Disability Support Groups: Introductions
Hi, Anje.
Thanks for taking time to write in - and introduce us to your family. I wish we could sit for a coffee somewhere...
Interesting to read your husband's parallel with Abraham and Isaac since I just finished Carol Kent's book "When I Lay My Isaac Down." It was a good read in the sense that it reminded me of how much I need to lay down and let go of the things that are dearest to me - my dreams for my kids, my hopes for my life, my family, etc. Other parts of the book did not relate to my life, but it was still good to read. (My favourite book continues to be The Boy in the Moon by Ian Brown.)
It also reminded me of the rut some of us find ourselves in when we want to say to the Lord - You owe me a good life, health, normal kids, sleep.... God doesn't owe us anything. Instead He gives us the grace and strength through Him and because of His sacrifice.
But that doesn't always comfort me in the middle of the night when I am dealing with medical issues after very little sleep.
Yet, I too hold to the faith that God will provide and He will be present. There are definitely seasons of joy and sorrow with this journey. Sometimes, I find that faith is all I can cling to - while crying out for Him to be present in the room, to take away the worries.
I ache that we can't attend church often as a family. We hope this will change. I am thankful our church family still reaches out to us, and we hope there remains a connection. We need each other!
I love your quiet sense of humour - if that is what it is with the comment about vanilla flavoured custard. : ) I am sure there is a story behind that comment.
Let us keep in touch through the forum, and I hope to keep writing. Sometimes it takes a week or two for me to respond, but I do read the entries. We are in a trying spot right now with Janneke's and now Rachel's blood sugar issues, so we have a number of appointments to attend. I hope we can find some resolution to the problem, but it is not seeming like an easy dilemna.
Peace for your day - and strength for the night ahead. We also sleep intermittently at night, and that wears down the body and the soul quickly.
Very good to hear from you.
spot
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: 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