Hi, Melissa. It is great to hear from you again. I loved your story in the Breaking Barriers - and your daughter is beautiful. I tried to send something earlier this afternoon with links. Did it send?
Well, apparently the network thought I was sending you spam!
I am glad someone wants to get a group started out your way. Our local children's centre offers groups from time to time. One of the regular session is done by Amy Baskin who wrote More Than a Mom. That might be worth checking out: http://morethanamom.net/
Sibshops is another good link for resources on siblings of children with special needs. http://www.siblingsupport.org/sibshops
I would also recommend Bethlehem Baptist's website from their disability ministry. This is the church where John Piper preaches - in Minneapolis. A Baptist church that is almost more reformed than some of our crc's! http://www.hopeingod.org/ministries/family/disability-ministry
Our local centre is currently offering a course from Triple P stepping stones parenting that might also have some good links: http://www10.triplep.net/?pid=2032
Hope these give you a few ideas. How are things going? Are you finding a balance with work and home? I've thought of you from time to time, wondering how it is going. Peace for your week, Melissa.
Anje, I sit here, stunned. I reread your post several times. Ingrid is home. Ingrid is Home?
Your words speak of hope in the sorrow, and I wonder how much those words reflect how you truly feel and how you aspire to feel.
Forgive me for any insensitivity, but were you anticipating this turn in the journey? Was it thought that Ingrid would die so early in her life?
I ache for you. I have never met you face-to-face, but I have tears for my new friend, for you who has already shown such grace and wisdom in just a few emails.
May God surround you and the family with his love. May His strength flow through you to minister to your family.
Adequate words fail at this time, but I wanted to post something -to send some love and prayer to you.
May you also be given the grace to receive those who offer their condolences - senstive and insensitive.
Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me. Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed. He is faithful. His mercies never fail.
Peace and joy to you, Anje.
spot
Your post is beautifully written. I want to share it with others because of the incredible hope and comfort it reveals - in spite/because of its raw circumstance. Someday, perhaps you would be willing to have it shared - even without your names if that was easier.
Dear Melissa. To you, a new friend that I have not met, I ask that God will give you immeasurable strength. My heart aches for you too. I don't want to believe the words you have typed.
I pray that you will see His faithfulness through this wilderness of sorrow and grief, and that you will also be lifted up by others around you. Grief doesn't go away; we learn to live with the grief, and it truly shapes us - sometimes, it seems, it breaks us.
First you learned to live with the grief that comes with loving a child with complex needs, and now you have a complicated grief of a different sort.
I had wondered about you in these last few months as you were excited to start a support group in your area. I wondered how that was going and how your return to work went.
And now, Savannah is in His arms. As beautiful as that is, it is also with tears that I acknowledge Savannah is no longer in your arms.
Perhaps you can draw comfort from Anje's words as she knows so much more than me these days you are in and are moving into. Finally, there is peace for both Savannah and Ingrid - and no more suffering for the two little girls.
Peace to you, Melissa. Much strength and love. I will pray for both you and Anje - and your families- as often as I can.
As I wrote to Anje: Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me. Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed. He is faithful. His mercies never fail.
Thank you for your words, Willie. I saw your wife's email again last night, and we have thought of you both often these last two weeks.
Your words are raw yet inspiring. I want to read them several times this week. I hesitate to write more for fear of simply throwing empty words and phrases out there.
Thank you. May God give you the strength, the joy, and the peace that passes our understanding but comes from Him.
I read your post several times. I poured myself a cup of coffee and read your words as if you and I were sitting together, having a coffee and talking this through.
I realize we don't know each other, but there is a virtual connection here, and your feelings resonate with some of mine.
We have different kids, but I know that ache when the reality of your daughter's disability is staring you on the face, on paper, and the focus of a meeting.
I am not going to say that everything will be fine. Each year does hold surprises - some pleasant and some unpleasant. I have been encouraged each year with my girls in their new therapy and school situations, but I have approached that year with trepidation and concern. Thankfully, many of my worrries were assauged by caring therapists and new people who came to love my girls.
Please - don't be ashamed of those feelings. I kind of laughed (with utmost sensitivity) when I read your words "I should go to the Bible... I know, I know, she brings many blessings..." I have said those same words. Sometimes the sarcasm is evident, but I share it only with those who know me well enough to not panic or feel awkward when I vent.
YES - you have to share those truthful feelings. Your ache is legitimate. This is a grief process that lasts a lifetime. The pain of the sorrow is more tangible at times and then fades, but it always there.
Sharing with your family can be awkward. Just because they are family does not mean they will understand. I have found that only a few of my family members "get it" so I also save those true feelings for a few good friends or a journal. Because, let's be honest, sometimes, it helps to share it and move on. If you share the feelings with the wrong person, they might get all worried for days, upset or bake you a casserole "to take the pain away."
One mom of older disabled children and I shared the real anger that comes at times - where we are almost angry with our child. We know it's not their fault, but anger is the first emotion that surfaces, and it has to be recognized.
I found that for the first three or four years of my daughters' life, I had to confront those dreams, some intense anger and that sorrow. Now that the girls are past three (Rachel is 6 and Janneke is 3), I find myself in a different space where I have less angst about the things they will not do. That may change, so I am not saying that I've got it figured out.
It is a very legitimate feeling to struggle with the things your daughter is NOT. At some point, you may even need to say them aloud to the wind or to your journal, so you can move forward and explore the things she IS. I don't say this to be trite or flaky - it's about naming the pain and learning to make a "new normal" and be content with an uncertain future.
As for the statement "God doesn't give you more than you can handle" - I almost scream when people say this. Ask them where in the Bible that is found. It is a misinterpretation of words found in the NT.... Thanks for your words of comfort!?!
God is alongside us, walking with us, grieving with us, and yes, He could fix everything, but we are trusting his infinite and ever-knowing will. He will give us so much to handle that we are brought to our knees, crying to Him, asking Him to handle it. When we begin to think that "I can do it; I can handle it", He reminds us - sometimes in difficult ways, sometimes in gentle ways, that life is about trusting Him and letting HIM handle it.
And He wants us to bring our true feelings to Him. I know God's arms are so wide that I can beat His chest in my anger and in my grief.... We embrace and worship a God whose arms span beyond the width of our anger, bitterness and sadness.
Pay attention to your feelings. I did go through some mild depression and anxiety issues for a time while struggling with this. I did talk with a pastor about this, and he was great in listening. He reminded my husband and I that we will need to wrestle with this spiritual calling from God, to be parents of children we did not anticipate. I also began walking/running regularly to give my body a chance to physically sweat the angst out of my system.
As for your comment "as if my girl is a prize for their career" I also smiled. We too, hear the comments about how much more loving and compassionate our older two girls must be because they have sisters with special needs - and then how much our disabled daughters can bless and affect others. Yes... there is some truth to that, but our kids are not tools.
On a side note, I follow Kelle Hampton's blog at times, a mom who has two daughters - the youngest has Down's Syndrome. Sometimes her blog posts make me shake my head because everything appears cute and lovely. She does attempt to write honestly, but there are other moms who have cautioned on trying to follow someone else's pattern. This refers to someone like yourself who sees an internet mom making it work - and wondering why you can't make it work like her. You will find your own pattern that suits your family and your daughter. You will continue to change and grow as she does.
You are right, she is a blessing. She is created by God, and she is a part of His Kingdom. In this day and age, there are so many more opportunities for acceptance and purpose with regards to living with a disability.
That doesn't mean you won't worry. You are the mom - that's what moms do.
Give this worry, this anger, and this sorrow to God. Find a way to name those feelings and ask Him to guide you through it. Emailing, journaling, or shouting to the wind can help. Ask God to provide people in your life that can handle your true feelings without judgement or casseroles. He does provide. He is faithful.
Take it one day at a time. If the heart hurts today, tuck away that IEP and take a walk with your kid. Watch her take in the world and ask God to holler at your heart.
Does any of this make sense? My coffee cup is empty, and I need make formula for the next 24 hours. That and get groceries, fold the laundry.... and maybe yell at the wind again.
Peace to you. Truly, may God give you peace. Lamentations 3:19-23 - we will remember our sorrows, but we know that they will not consume us. We have HOPE that God is faithful.
Happy Anniversary to you and your husband, Melissa. Those emotions - bittersweet - seem understable. I believe I would have the same complicated feelings on such a day.
May this day bring a sweet new memory -and may you be blessed with many more years together.
As for being reluctant to respond, know that you will never lose that insight in raising a child with special needs. One of my more powerful prayer warriors and supporters is a mom who lost her child early in his life. Her son was my age, so it has been many years since those days for her - yet, she "gets it" and I love the understanding she has without me having to explain.
May God give you peace today and may you sense the Hope He gives - the promise for tomorrow and all it holds.
There is so much we don't understand in this life, and in trying to make sense of it all, we lose time to cherish the joy that is right in front of us. Yet, I find sleep deprivation an enemy that robs me of such logic - and I must remind myself out loud to fight for joy more so than understanding in this journey.
I just read through your emails again. I hope you have them recorded somewhere for you to read later too.
His Spirit comes through your words, bringing encouragement and a sense of accountability to me.
I guess I've never really asked about what I might have done wrong to make this happen -according to God, but yes, I have wondered what I did during my pregnancies that could have caused all the anomalies. Yet, when I consider closely each pregnancy, I know that I ate and did much of the same things and food with all four girls. WIth two being normal and two being not-normal, I am at a loss to explain the difference.
I am thankful for the upbringing I had, especially with relation to my concept of God and his sovereignty. I've not thought that God would do something to my children because of my sins. I just don't understand that line of thinking, yet I have a friend who was told exactly that by her church.
The sickroom is no place to debate or expound upon theology!
Bev, I was thinking the same text when I read your first email - the story from the book of John. John Piper has an amazing sermon that is worth sharing with your group. Here is the link:
It is good to talk through the misconceptions and feelings because I think when we don't name or address those fears or misgivings, they supersede our intentions with our children. And I am also very aware of how my "normal" girls perceive God according to our circumstance.
I still remember one elder visiting our home after our third daughter was born. I have to laugh now - and I deeply respect this man -but at the time, it was a bit of a shock. I said "why me?" and he responded with "why not you?" He's right. But, it wasn't the comforting words I was seeking at the time!
I hope the group continues to hold each other up and encourage each other. I find support groups can sometimes turn into story-topping or complaint sessions. I hope that you will also come together in Truth and seek to grow in your faith as you wrestle with your doubts.
I share some of the same feelings as you with regards to preparing for Christmas.
But - first, let me respond to your comment about the teeth grinding. Yes, Rachel grinds her teeth often, and I cannot stand the sound. My ears are so sensitive to certain sounds, and teeth grinding is at the top of the list (along with fingernails on a chalkboard). We started with a chiropractor for her muscle tenseness and scoliosis, and conveniently, the chiropractor also gave us advice on the grinding.
The grinding could be a control issue - something our girls can do without help, it could be a coping mechanism to deal with pain or discomfort elsewhere, or it could be related to teething.
We have found that her grinding subsided when we focused on a full body massage that included her neck and jawline. We worked up the back and then along the shoulders, moving our fingers in the direction away from the neck (like pulling the stress away). We do a full masssage twice a day, partly because of grinding and partly because of muscles stiffness. So far, that's the best advice I can give you.
Oddly enough, I have noticed how much I clench when I am tired, stressed, or worried. Clenching is apparently my body's coping mechanism... :)
As for the preparation for Christmas, I find having disabled/cognitively delayed children carries a bittersweet blessing - in that you are forced to seek what is truly the spirit of Christmas. The excitement over gifts and candy is completely past the comprehension of our special needs girls. We also have a hard time coordinating taking the older girls sledding or skating while wishing we could take all four girls. As hard as it is when you watch other "normal" kids, you are right in seeking some of the simple joys - the songs, the lights. And then you may find that your own heart and faith is positively affected by this.
I am glad, though, that you write honestly. That is important.
I struggle each year with putting a gift under our tree for Rachel and Janneke. We don't focus too much on gifts at Christmas time, but we still give a gift to our girls on Christmas Eve (because of His Gift!). Part of my actions are dictated by her older sisters - according to them, there has to be a gift for them. It is often slippers or a music cd, something that we can incorporate with their care. I actually asked for Christmas lights for Janneke (someone in the extended family wanted to buy her a gift), the kind that have different settings for the lights (blinking, etc). She loves to look at lights all year long, so this is the time to look for a good strand. :)
The last number of days have been harder for me, and yesterday I was struggling with some anger and frustration over the lack of sleep in my life. In my silent prayer to God, I heard my Handel's Messiah cd (which plays all the time in December!) and the song that started at that moment was Comfort, Comfort, Ye My People.
Yes, we need His comfort, eh?
I am thankful we embrace and worship a God whose arm span outstretches all my anger, frustration, and sorrow - a God who embraces us in those arms to say, "Be still, I am with you."
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.
Posted in: Advice on Starting Support Groups for Parents?
Hi, Melissa. It is great to hear from you again. I loved your story in the Breaking Barriers - and your daughter is beautiful. I tried to send something earlier this afternoon with links. Did it send?
spot
Posted in: Advice on Starting Support Groups for Parents?
Well, apparently the network thought I was sending you spam!
I am glad someone wants to get a group started out your way. Our local children's centre offers groups from time to time. One of the regular session is done by Amy Baskin who wrote More Than a Mom. That might be worth checking out: http://morethanamom.net/
Sibshops is another good link for resources on siblings of children with special needs. http://www.siblingsupport.org/sibshops
I would also recommend Bethlehem Baptist's website from their disability ministry. This is the church where John Piper preaches - in Minneapolis. A Baptist church that is almost more reformed than some of our crc's! http://www.hopeingod.org/ministries/family/disability-ministry
Our local centre is currently offering a course from Triple P stepping stones parenting that might also have some good links: http://www10.triplep.net/?pid=2032
Hope these give you a few ideas. How are things going? Are you finding a balance with work and home? I've thought of you from time to time, wondering how it is going. Peace for your week, Melissa.
spot
Posted in: Hidden Truths
Anje, I sit here, stunned. I reread your post several times. Ingrid is home. Ingrid is Home?
Your words speak of hope in the sorrow, and I wonder how much those words reflect how you truly feel and how you aspire to feel.
Forgive me for any insensitivity, but were you anticipating this turn in the journey? Was it thought that Ingrid would die so early in her life?
I ache for you. I have never met you face-to-face, but I have tears for my new friend, for you who has already shown such grace and wisdom in just a few emails.
May God surround you and the family with his love. May His strength flow through you to minister to your family.
Adequate words fail at this time, but I wanted to post something -to send some love and prayer to you.
May you also be given the grace to receive those who offer their condolences - senstive and insensitive.
Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me. Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed. He is faithful. His mercies never fail.
Peace and joy to you, Anje.
spot
Your post is beautifully written. I want to share it with others because of the incredible hope and comfort it reveals - in spite/because of its raw circumstance. Someday, perhaps you would be willing to have it shared - even without your names if that was easier.
Posted in: Hidden Truths
Dear Melissa. To you, a new friend that I have not met, I ask that God will give you immeasurable strength. My heart aches for you too. I don't want to believe the words you have typed.
I pray that you will see His faithfulness through this wilderness of sorrow and grief, and that you will also be lifted up by others around you. Grief doesn't go away; we learn to live with the grief, and it truly shapes us - sometimes, it seems, it breaks us.
First you learned to live with the grief that comes with loving a child with complex needs, and now you have a complicated grief of a different sort.
I had wondered about you in these last few months as you were excited to start a support group in your area. I wondered how that was going and how your return to work went.
And now, Savannah is in His arms. As beautiful as that is, it is also with tears that I acknowledge Savannah is no longer in your arms.
Perhaps you can draw comfort from Anje's words as she knows so much more than me these days you are in and are moving into. Finally, there is peace for both Savannah and Ingrid - and no more suffering for the two little girls.
Peace to you, Melissa. Much strength and love. I will pray for both you and Anje - and your families- as often as I can.
As I wrote to Anje: Lamentations 3:19-23 - I remember my sorrows and my soul is downcast within me. Yet this I call to mind and therefore I have hope. Because of the Lord's great love, we are not consumed. He is faithful. His mercies never fail.
spot
Posted in: Hidden Truths
Thank you for your words, Willie. I saw your wife's email again last night, and we have thought of you both often these last two weeks.
Your words are raw yet inspiring. I want to read them several times this week. I hesitate to write more for fear of simply throwing empty words and phrases out there.
Thank you. May God give you the strength, the joy, and the peace that passes our understanding but comes from Him.
spot
Posted in: My Heart Hurts
I read your post several times. I poured myself a cup of coffee and read your words as if you and I were sitting together, having a coffee and talking this through.
I realize we don't know each other, but there is a virtual connection here, and your feelings resonate with some of mine.
We have different kids, but I know that ache when the reality of your daughter's disability is staring you on the face, on paper, and the focus of a meeting.
I am not going to say that everything will be fine. Each year does hold surprises - some pleasant and some unpleasant. I have been encouraged each year with my girls in their new therapy and school situations, but I have approached that year with trepidation and concern. Thankfully, many of my worrries were assauged by caring therapists and new people who came to love my girls.
Please - don't be ashamed of those feelings. I kind of laughed (with utmost sensitivity) when I read your words "I should go to the Bible... I know, I know, she brings many blessings..." I have said those same words. Sometimes the sarcasm is evident, but I share it only with those who know me well enough to not panic or feel awkward when I vent.
YES - you have to share those truthful feelings. Your ache is legitimate. This is a grief process that lasts a lifetime. The pain of the sorrow is more tangible at times and then fades, but it always there.
Sharing with your family can be awkward. Just because they are family does not mean they will understand. I have found that only a few of my family members "get it" so I also save those true feelings for a few good friends or a journal. Because, let's be honest, sometimes, it helps to share it and move on. If you share the feelings with the wrong person, they might get all worried for days, upset or bake you a casserole "to take the pain away."
One mom of older disabled children and I shared the real anger that comes at times - where we are almost angry with our child. We know it's not their fault, but anger is the first emotion that surfaces, and it has to be recognized.
I found that for the first three or four years of my daughters' life, I had to confront those dreams, some intense anger and that sorrow. Now that the girls are past three (Rachel is 6 and Janneke is 3), I find myself in a different space where I have less angst about the things they will not do. That may change, so I am not saying that I've got it figured out.
It is a very legitimate feeling to struggle with the things your daughter is NOT. At some point, you may even need to say them aloud to the wind or to your journal, so you can move forward and explore the things she IS. I don't say this to be trite or flaky - it's about naming the pain and learning to make a "new normal" and be content with an uncertain future.
As for the statement "God doesn't give you more than you can handle" - I almost scream when people say this. Ask them where in the Bible that is found. It is a misinterpretation of words found in the NT.... Thanks for your words of comfort!?!
God is alongside us, walking with us, grieving with us, and yes, He could fix everything, but we are trusting his infinite and ever-knowing will. He will give us so much to handle that we are brought to our knees, crying to Him, asking Him to handle it. When we begin to think that "I can do it; I can handle it", He reminds us - sometimes in difficult ways, sometimes in gentle ways, that life is about trusting Him and letting HIM handle it.
And He wants us to bring our true feelings to Him. I know God's arms are so wide that I can beat His chest in my anger and in my grief.... We embrace and worship a God whose arms span beyond the width of our anger, bitterness and sadness.
Pay attention to your feelings. I did go through some mild depression and anxiety issues for a time while struggling with this. I did talk with a pastor about this, and he was great in listening. He reminded my husband and I that we will need to wrestle with this spiritual calling from God, to be parents of children we did not anticipate. I also began walking/running regularly to give my body a chance to physically sweat the angst out of my system.
As for your comment "as if my girl is a prize for their career" I also smiled. We too, hear the comments about how much more loving and compassionate our older two girls must be because they have sisters with special needs - and then how much our disabled daughters can bless and affect others. Yes... there is some truth to that, but our kids are not tools.
On a side note, I follow Kelle Hampton's blog at times, a mom who has two daughters - the youngest has Down's Syndrome. Sometimes her blog posts make me shake my head because everything appears cute and lovely. She does attempt to write honestly, but there are other moms who have cautioned on trying to follow someone else's pattern. This refers to someone like yourself who sees an internet mom making it work - and wondering why you can't make it work like her. You will find your own pattern that suits your family and your daughter. You will continue to change and grow as she does.
You are right, she is a blessing. She is created by God, and she is a part of His Kingdom. In this day and age, there are so many more opportunities for acceptance and purpose with regards to living with a disability.
That doesn't mean you won't worry. You are the mom - that's what moms do.
Give this worry, this anger, and this sorrow to God. Find a way to name those feelings and ask Him to guide you through it. Emailing, journaling, or shouting to the wind can help. Ask God to provide people in your life that can handle your true feelings without judgement or casseroles. He does provide. He is faithful.
Take it one day at a time. If the heart hurts today, tuck away that IEP and take a walk with your kid. Watch her take in the world and ask God to holler at your heart.
Does any of this make sense? My coffee cup is empty, and I need make formula for the next 24 hours. That and get groceries, fold the laundry.... and maybe yell at the wind again.
Peace to you. Truly, may God give you peace. Lamentations 3:19-23 - we will remember our sorrows, but we know that they will not consume us. We have HOPE that God is faithful.
spot
thepotfamily.blogspot.com
Posted in: Hidden Truths
Thank you, Anje. Your words, once again, bring a solid sense of Being. May God continue to walk alongside you. May you feel His Peace.
I often think about you and your family. It is good to read your words again.
spot
Posted in: Hidden Truths
Happy Anniversary to you and your husband, Melissa. Those emotions - bittersweet - seem understable. I believe I would have the same complicated feelings on such a day.
May this day bring a sweet new memory -and may you be blessed with many more years together.
As for being reluctant to respond, know that you will never lose that insight in raising a child with special needs. One of my more powerful prayer warriors and supporters is a mom who lost her child early in his life. Her son was my age, so it has been many years since those days for her - yet, she "gets it" and I love the understanding she has without me having to explain.
May God give you peace today and may you sense the Hope He gives - the promise for tomorrow and all it holds.
spot
Posted in: Hidden Truths
Thank you, Willie and Anje, for your words.
There is so much we don't understand in this life, and in trying to make sense of it all, we lose time to cherish the joy that is right in front of us. Yet, I find sleep deprivation an enemy that robs me of such logic - and I must remind myself out loud to fight for joy more so than understanding in this journey.
I just read through your emails again. I hope you have them recorded somewhere for you to read later too.
His Spirit comes through your words, bringing encouragement and a sense of accountability to me.
Stertke to you both.
spot
Posted in: "What Did I Do to Deserve This?"
I guess I've never really asked about what I might have done wrong to make this happen -according to God, but yes, I have wondered what I did during my pregnancies that could have caused all the anomalies. Yet, when I consider closely each pregnancy, I know that I ate and did much of the same things and food with all four girls. WIth two being normal and two being not-normal, I am at a loss to explain the difference.
I am thankful for the upbringing I had, especially with relation to my concept of God and his sovereignty. I've not thought that God would do something to my children because of my sins. I just don't understand that line of thinking, yet I have a friend who was told exactly that by her church.
The sickroom is no place to debate or expound upon theology!
Bev, I was thinking the same text when I read your first email - the story from the book of John. John Piper has an amazing sermon that is worth sharing with your group. Here is the link:
http://www.desiringgod.org/resource-library/sermons/why-was-this-child-born-blind
It is good to talk through the misconceptions and feelings because I think when we don't name or address those fears or misgivings, they supersede our intentions with our children. And I am also very aware of how my "normal" girls perceive God according to our circumstance.
I still remember one elder visiting our home after our third daughter was born. I have to laugh now - and I deeply respect this man -but at the time, it was a bit of a shock. I said "why me?" and he responded with "why not you?" He's right. But, it wasn't the comforting words I was seeking at the time!
I hope the group continues to hold each other up and encourage each other. I find support groups can sometimes turn into story-topping or complaint sessions. I hope that you will also come together in Truth and seek to grow in your faith as you wrestle with your doubts.
Peace. spot
Posted in: Hidden Blessings
Melissa, a blessed Christmas to you too.
I share some of the same feelings as you with regards to preparing for Christmas.
But - first, let me respond to your comment about the teeth grinding. Yes, Rachel grinds her teeth often, and I cannot stand the sound. My ears are so sensitive to certain sounds, and teeth grinding is at the top of the list (along with fingernails on a chalkboard). We started with a chiropractor for her muscle tenseness and scoliosis, and conveniently, the chiropractor also gave us advice on the grinding.
The grinding could be a control issue - something our girls can do without help, it could be a coping mechanism to deal with pain or discomfort elsewhere, or it could be related to teething.
We have found that her grinding subsided when we focused on a full body massage that included her neck and jawline. We worked up the back and then along the shoulders, moving our fingers in the direction away from the neck (like pulling the stress away). We do a full masssage twice a day, partly because of grinding and partly because of muscles stiffness. So far, that's the best advice I can give you.
Oddly enough, I have noticed how much I clench when I am tired, stressed, or worried. Clenching is apparently my body's coping mechanism... :)
As for the preparation for Christmas, I find having disabled/cognitively delayed children carries a bittersweet blessing - in that you are forced to seek what is truly the spirit of Christmas. The excitement over gifts and candy is completely past the comprehension of our special needs girls. We also have a hard time coordinating taking the older girls sledding or skating while wishing we could take all four girls. As hard as it is when you watch other "normal" kids, you are right in seeking some of the simple joys - the songs, the lights. And then you may find that your own heart and faith is positively affected by this.
I am glad, though, that you write honestly. That is important.
I struggle each year with putting a gift under our tree for Rachel and Janneke. We don't focus too much on gifts at Christmas time, but we still give a gift to our girls on Christmas Eve (because of His Gift!). Part of my actions are dictated by her older sisters - according to them, there has to be a gift for them. It is often slippers or a music cd, something that we can incorporate with their care. I actually asked for Christmas lights for Janneke (someone in the extended family wanted to buy her a gift), the kind that have different settings for the lights (blinking, etc). She loves to look at lights all year long, so this is the time to look for a good strand. :)
The last number of days have been harder for me, and yesterday I was struggling with some anger and frustration over the lack of sleep in my life. In my silent prayer to God, I heard my Handel's Messiah cd (which plays all the time in December!) and the song that started at that moment was Comfort, Comfort, Ye My People.
Yes, we need His comfort, eh?
I am thankful we embrace and worship a God whose arm span outstretches all my anger, frustration, and sorrow - a God who embraces us in those arms to say, "Be still, I am with you."
Peace for your week, Melissa.
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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