Disability Support Groups: Introductions

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Sara, this was such a good idea and Mark, thanks for getting it off the ground!  I can't wait to get to know other parents out there who have similar struggles.  I've belonged to other online support groups that targeted my son's disabilities, but I've never belonged to a Christian one.  In those groups, talking too openly about faith was a strict no-no.  Consequently, I often left my computer more depressed that when I went in, due to the negativity and hopelessness that these parents lived with.  I was often struck by how shallow the encouragement was that they could offer.  "I'm sending white light out to you" really doesn't offer much hope, does it?  What's that all about?  How refreshing to be able to offer true hope, love, and encouragement!

I would love to hear your stories!  They don't have to be long ... just a brief introduction about who you are and what brings you to this group.  I'll start...

My husband, Steve, and I adopted our son Kyle, now 18, when he was two months old from Bethany Christian Services.  He was a special needs adoption since he was born with Neurofibromatosis Type I.  His birthmother has this disorder, as well.  With NF1, there is a strong possibility of developing fibromas (benign tumors) under the skin.  These tumors can be disfiguring and could cause multible problems, especially if they form on the optic or auditory nerves.  NF1 can also cause learning disabilities and ADHD.  So far, Kyle has not developed fibromas, but he does struggle with learning disabilities and ADHD.

Our greatest challenge with Kyle, though, is his struggle with mental illness.  This is most likely not associated with his NF1.  Kyle has a diagnosis of bipolar disorder, generalized anxiety disorder, ADHD, and Asperger's Traits.  His primary mood, at least when's he's unstable, is anger and agitation.  That's probably been one of the hardest things to deal with.  He is usually anxious about something and it always expresses itself in anger.  He has rages (though not at bad as before proper medication) and often has meltdowns.  Not fun. 

Our biggest issue right now is getting him to work.  So far, we're not having much success.  He's receiving funding to work at a sheltered workshop, but they primarily serve adults with mental retardation.  He does not feel like he fits in, and we understand that.  He would only need to work there a few months, though, and they would help him find a job in the community, as well as provide job coaching.  It sounds great to us, but we just can't get him there.  Today again, he had a meltdown and simply refused to go.  We're totally frustrated and not sure what plan B is. 

We do know, though, that we're not walking this path alone.  That's where our hope and encouragement comes from.  We couldn't get through a day without the strength Jesus provides us.  He has been our constant Presence.  White light?  No, I rely on the Light of the world! 

Anyway, that's a little of my story.  What's yours?

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Hello!  I also am very happy to be a part of this group, especially because we can be free with our faith.  Some of you are already aware of Ryan (my husband) and my daughter, Savanah Grace.  But for any newcomers.....Savanah is now 11 months old and was diagnosed with an interstitial deletion on chromosome 2 and West's syndrome.  Her diagnosis is very rare and at first the geneticist told us that we should expect mental and physcomotor delays, sleep and behavior problems and ataxia, however they weren't sure to what degree.  She did eventually learn to smile and coo and occasionally we were able to see some improvement in her neck strength.  Over time she developed infantile spasms and completely regressed.  We have been in and out of the hospitals because we were unable to get her seizures under control.  Her neurologist has now told us that she is severely disabled and was not even sure that she would regain the skills of smiling and cooing back.  This has been such a journey for our family to say the least.  Her seizures peaked at 10 months when she could have them occur up to 10 times a day, lasting from 5 minutes long to almost 4 hours long.  It was heartbreaking to see and we felt so helpless in being able to help her.  However, I am happy to report that she has been seizure free for over 2 weeks now!  Praise God!  She is starting to eat better and occasionally smiles at us :)  The doctors aren't very positive about any further development of any kind.  So we are trying to find our way, a "new normal" and possibly make sense of what is going on.  We have started physiotherapy and occupational therapy and are in the process of obtaining new equipment at home to better help support her body as she is growing out of all the newborn things I have at home.   I have started searching for support groups online because we live in a very rural community which has nothing available out here.  There is a lady in my church who is our parish nurse that is thinking of starting a support group for parents with disabled children and we hope to meet for the first time this fall.  If any of you have any advice and expereince with this please let me know and I can pass it along.  I have been recommended a couple of books to read as well and have now ordered them.  Please let me know if any of you have a special website, book, music, poem etc...that has been helpful for you.  There is so much info online that I'm having a hard time knowing where to start.  This forum has really been an answer to one of my many prayers :)  God bless you all.  I really like to connect with you and hopefully not feel so alone in this whole journey.  Melissa

 

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-b...

and here is the link to the interview with the dad:

http://www.desiringgod.org/resource-library/interviews/john-piper-interv...

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

Guide

Check out this great story about the Pot family that came out Monday in the St. Catherines Standard. Gives a good sense of the challenges faced by parents of two children with severe disabilities as well as extensive medical needs. Thanks to Ralph and Sara for sharing so openly.

Guide

Thanks so much to all of you who have shared. Here's a short version of our story.

Bev and I were delighted to be expecting our first child. The pregnancy was going quite well, but then at about 26 weeks, there was a placental abruption. Nicole was born a few hours later, under great stress, and immediately put on a ventilator. At 1 pound 14 ounces, she weighed less than a kilo. During her first stay in the hospital of six and one-half months, she had a severe brain hemmorhage which has resulted in severe intellectual disability and some cerebral palsy, as well as some retinal damage and a great deal of scarring in her lungs. Nicole has been hospitalized many times since then for surgeries, infections, and severe seizures. She is classified as severely multiply impaired. She cannot speak, cannot walk on her own, and cannot engage in most tasks of daily living.

But this recounting of the challenges she has faced only tells part of her story. Nicole faces life with an amazing amount of grace. She tolerates difficulty and pain without self-pity. She maintains an amazingly upbeat perspective on life. She loves to gather with God's people in worship, and hoots and waves during her favorite songs. Unlike most of us, she does amazingly well at being present in the moment without undue longing for the past nor fear for the future. Besides smiling, another way that she has found to connect with people is by gently touching them on the cheek to express connection and thanks. She does this in the evening after her care givers say prayers with her before bed. She loves school, roller coasters, and paging through magazines until her fingers turn black.

Nicole lived with us for her first 18 years, and has lived in a wonderful Christian group home, Harbor House Ministries, since November 2005.

Besides ongoing concerns about her health, one of our biggest concerns is the current turmoil in state and federal budgets and what that might mean for Nicole's care and the care of other people who are the most vulnerable members of our society. I've recently joined a listserv in which people post information about upcoming state and local public forums about medicare and medicaid and lots of other stuff too like current thinking about how best to allocate dollars and provide the least restrictive environments for people with intellectual disabilities. Political stuff is definitely not my area of speciality, but then neither was all the medical stuff that Nicole and others taught us about. We just keep learning and growing, thanks in part to Nicole.

Bev and I have three other typically developing children. Our son Ben's perspective on being the brother of Nicole is recorded in a fine little book Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs.

God used Nicole in my life to lead me from parish ministry to my current ministry as director of disability concerns for the Christian Reformed Church. And God used Nicole to lead Bev into her calling today as a Special Education Teacher.

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

Hello,

We returned from Revelstoke, B.C. this week where we had a family reunion.  It was a great time to reunite with a lot of family that I haven't seen since my wedding over 9 years ago.  Many of my cousins also had babies this past year, including one of my cousins having a baby girl on the same day that I gave birth to Savanah.  It was bittersweet to see what we are actually missing with Savanah and yet encouraging to see all the love that was showered down on us.  I could tell that a lot of my extended family had a difficult time in knowing what to say to us or how to respond to Savanah.  I really tried to stay open and positive about everything, so not to make anyone feel uncomfortable.  How should I respond in situations like this?  Sometimes I have a hard time knowing when to speak about the day to day struggles and when to focus more on the others around me and make them feel more comfortable.....On another note, I start back at work this week and I would like to ask for your prayers with this new direction in our family life.  The plan is for me to work 4 evening shifts (3-11pm) every 2 weeks.  Most of the time my husband will be able to look after Savanah at home, but there are a few hours here and there that I will need to find a babysitter.  I pray that we will find someone with a loving and caring heart that has oodles of patience :)  I also pray that I will have the energy to still do a proper job at work and also maintain what needs to be done at home. 

Here's to a week filled with God's grace,

Melissa

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

Hello!  What a blessing to find this forum!  I appreciate everyone's stories and honesty.

In a nutshell, I am the wife and mother to a wonderful family of five.  My 12 year old daughter is a typically developing child who fits the mold as a "firstborn".  My 10 year old son is "all boy" in every way, plus he is gifted, so he's really a handful.  My youngest, a 4 year old girl, was born with "Mosaic Down Syndrome," which means that some of her genes have an extra 21st chromosome, and some do not.  She does not look disabled, and many people do not know of her condition unless I tell them.  She is sweet and cooperative with other people when she is away from home, but around the family, she is demanding and uncooperative.  In my opinion, her behavior is one of our biggest challenges.  She has had a feeding tube for the last 3 years due to her inability to consume enough calories orally.  By the grace of God, she has improved by gaining lots of weight, and has a scheduled appointment to have the tube removed in November! 

My husband and I have had many interactions with Ellie that seem as she she was speaking for God.  Does that make sense?  She will say something or do something that seems as though it wasn't her who did it, but rather the Holy Spirit.  For instance, one time she sincerely told my husband and I that "God loves us" out of the blue.  Both of us needed to hear that at that moment, and we felt so comforted by her words.  We both teared up. 

I feel very fortunate to be part of this diverse family.  It's not with out its struggles, but also has many unforseen blessings.

I look forward to sharing more with you as time goes on.

Sncerely,

Lc3style

Participant

Welcome!  I'm so glad you found us :).  Thanks for sharing your story.  I haven't heard of Mosaic Down Syndrome.  I would imagine that, in a way, it's almost more difficult than if your litle one had typical Downs (especially since your daughter does not look disabled).  It's exhausting when their behavior at home is so demanding.  Please know that this will be a safe place to vent!  I'm sure that most of us (if not all of us) will understand.

I loved your insight into your daughter's special gifting.  What a blessing! "From the lips of children and infants you, Lord, have called forth your praise!" (Matt. 21:16) (see also Psalm 8:2).

Blessings on your journey~

Bev

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

Hi.  I'm excited about this new group.  Although some of my friends with a special needs loved ones are Christians who follow Jesus, many are not.  And likewise, I find very few Christians on the online Autism groups that I belong too.  I'm so  ready to move beyond my son's behavioral, educational, and physical needs to his spiritual needs.  Likewise, I'm anxious to start to Disability ministry in my church.

But I'm getting ahead of myself.

My husband and I have two children.  Our eldest is Keelan and he is a typical 17 year old senior.  He has been diagnosed with ADHD but that has been easily managed over the years.  I think it's because his ADHD is quite mild plus compared to our other son, it's a walk in the park.

Our younger 16 yo son is Kavan and he has Autism along with a few other tags that have been added over the years.  He's quite challenging but our Lord has blessed us time and time again as we have seen "Him work all things for good."  And as most of you know, we all go through more difficult times and also easier times.  This is an easier time for us as Kavan's aggressive behaviors are now at an all-time low and we have amazing supports and programs in place that are working for him.

So I've been on the internet reading about disability ministries as I want to start one in my church.  And there's some other church members that are excited about it too.  And a friend in a neighboring church wants to partner with us too.  Our vision is that we eventually will have a network of churches in our community that welcome those with disabilities.  So that's my latest thing.

But the other thing I often think about is how can I teach my son about Jesus?  He loves music so I have used that and he has memorized several songs.  KLOVE is his favorite radio station.  But his language is limited to very concrete "here and present" things so bigger concepts can not be discussed.  I look forward to hearing what has worked with your loved ones.

Your sister in Christ, Jill

 

Hallo,

My name is Anje - married to Willie Botha. We are the parents of Magdel (11 years) and Ingrid (6 years). We live in Pretoria, South Africa.

We found the web-site through the Pot family blog and would like to share our family's story. 

Magdel is attending grade 5 at a Christian school and doing well. Ingrid was born with a rare chromosome translocation (9 to 17 - I can't remember the break-points any more - will have to look it up), agenesis of the corpus callosum and refractory, intractable West syndrome. She is cortically blind, hypotonic, has no speech and is at age 6 years developmentally like a 3 month old baby.

After finally hearing Ingrid's shattering diagnosis and prognosis at age 5 months, we entered a whole new world of parenting a severely disabled child with a poor prognosis.

My husband used the analogy of the LORD telling Abraham to take his only son and go to Moriah - Abraham obeyed and went there in faith. So we too, have to walk this road in faith.

On our journey we have lost friends and some family members too. We have had to deal with various comments and platitudes in waiting rooms, at church, hospitals, work-places - some of these were well-intentioned, some thoughtless, some cruel and some were kind.

We have learnt to cope with very little sleep and various medical equipment. We have done quite a bit of research on our own and have found creative ways of administering medication and nourishing and stimulating a disabled child. We have learnt to attach the correct meaning to various gestures, movements and uttered sounds. We have also learnt that seemingly small and routine acts (such as having a bath) can calm an agitated child and sooth a feverish body. Vanilla flavoured custard is the best food invented.

We had (and still have) many questions and few answers - but we have learnt to wait upon the LORD and to hold onto 1 Corinthians 4:1 "Let a man so consider us, as servants of Christ and stewards of the mysteries of God."

We have gained a new understanding when parents utter the words "We have a disabled child."  And we offer our highest admiration to them.

We would like to hear from you.

Anje.

   

 

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

Hallo Sara,

Thank you for your kind words. I read several blogs in the past and was very thankful to come across this one.

I read some of the discussion forums and I think the "Why" question is one that is difficult for parents with a disabled child to deal with - it still comes up for me at times.

Illness, pain and disability is part of the sinful world we live in - Rom 5: 12 "Therefore, just as through one man sin entered the world, and death through sin, and thus death spread to all men, because all sinned-".

The difficult part for a parent is when he is faced with the question "Why my child?" And to live and experience their child's suffering and struggles in this world.

I think this has to do with our expectations when we decide to have children - I wanted a child that will have an A-average at school one day and eventually become a rocket-scientist (or something else on the same line). It is easy to be thankful for that.

When faced with the sorrowful reality of having a severely disabled child and all the crushed expectations that goes with it, we want to blame someone - ourselves, the doctor, God.

Until I realised that this child too, is a creation of God - John 9:3 "... Neither this man nor his parents sinned, but that the works of God should be revealed in him." And I realised that I cannot begin to comprehend the omnipotence of God - Isaiah 55:8&9 " For My thoughts are not your thoughts, nor are your ways My ways, says the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts."

As Job said "Shall we indeed accept good from God, and shall we not accept adversity?" (Job 2:10) Then I was humbled and thankful to be a "steward of the mysteries of God".

I have ordered Ian Brown's book from overseas - it is not available in South Africa - can't wait to read it. 

My husband and I also take turns to go to church - Ingrid's hyper-excitability and epilepsy make it difficult - but we still find comfort in church. Some of the best times we catch up and plan is at 3 o'clock in the morning over a cup of tea.

Oh yes - the custard. A store in South Africa (Woolworths) sells vanilla custard made with fresh cream amongst other things - on a bad day this is the only food that Ingrid tolerates with her Pediasure. She only drinks vanilla-flavoured Pediasure (you waste money on the other flavours). My husband says that chocolate is also a favourite (that like she gets from me). 

God bless - you and your family are in our prayers,

Anje

 

  

Guide

Hi Anje, I've appreciated reading your heartfelt comments. Our first child, Nicole, was born extremely prematurely and experienced many complications. We grieved the child that we dreamed of but didn't get, then felt guilty that we were grieving because we had a child right in front of us. It took us a long time to work through those complex emotions. Today, at 24, Nicole lives joyfully with multiple severe disabilities. God is good all the time, but sometimes I can taste his goodness better than at other times.

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-b...

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_h...

 

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

 

Hallo Sara & Mark,

Thank you for inspiring words.

I am familiar with the works of John Piper. I have just finished a course on Biblical Counselling - was presented by ministers that have trained and worked with Jay Adams and John MacArthur. We used books of John Piper during the course. One of the women I met there (Anna form Sweden), recommended a book by John Piper on Ruth and Naomi - 'A Sweet and Bitter Providence". I have always thought that the book of Ruth deals with losses to a certain extent and was interested to read it. My husband was able to get hold of a copy - and this book really speaks to me! 

I really did not think that the book will have anything related to disabled children in it - but in the book is a humbling and touching testimony of John Knight (who works at Desiring God) - who also has a disabled son.

God really works in mysterious ways - I will definitely have a look at John Piper's sermon.

I could gather from information on the internet that 'The Boy in the Moon' was not written from a Christian perspective - but I still thought that it might give insight to his experience as a father. Thank you for the caution, Sara - I will also read more of Vanier.

I hope that the meeting with Janneke's medical team were fruitful - you are in our prayers.

God bless,

Anje

Participant

Hi Anje,

I'm glad you found this forum!  There's something so comforting about knowing that we're not walking this journey alone.  Even though many miles and much water separates us, we have a common bond in the Lord.  I love that!

Our story is quite a bit different.  Our son struggles with mental illness issues.  We've had a lot of challenges throughout the years.  He graduated from high school last May.  He has a job, but seldom goes.  He has huge struggles with anxiety, but he's also extremely oppositional.  It's been particularly bad again the past few months.

Last fall a group of women in our community worked through a Bible study I wrote, "Unlocking the Treasure."  It's written specifically for moms who have children with special needs.  We loved getting together weekly -- discovering God's promises for us...sharing our joys...and praying over our struggles.  Even though the Bible study is finished, we still get together from time to time.

A couple of weeks ago, I started the study with another group of women.  It's amazing how there is just an instant bond.  Even though our stories are so different (many different diagnoses, different ages), our emotional struggles as moms are so similar.  We ache for our children and yes, even for ourselves.  It's great to have a safe place to open our hearts.

I glad you have some who support you.  It's very hard when we're misunderstood as parents, especially when we're doing the best we can in such a difficult situation.  You sound like you are awesome parents.  Your children are very blessed to be able to call you "mom."

Blessings to you,

Bev

 Hallo Bev (and everyone else),

Thank you for your support & encouragement.

Bev, if possible, I would like to get more info on the Bible study that you have done (my husband and I like to read on disability - especially from a Christian perspective). 

It is humbling to realise that there are Christian parents from all over that are experiencing the same trials and joys with their children.

A while ago I came across a piece on the internet that was written to mothers with disabled children - for me it speaks about a lot of issues that parents with disabled children deal with - whether the disability is mental or physical.

I would like to share it with you. 

 

For Special mothers

My friend was expecting her first child. People keep asking her what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it is a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the colour of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing: it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.

Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls that explain how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one: saluting you, painting you as hero and saint, when you know that you are ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling: “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please let me do it for you.

From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law.

You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

By Lori Borgman, May 12, 2002   

 

God bless all,

Anje 

Participant

hi Anje,

I'm sending you a private email about the Bible study.  Thanks for sharing the letter you posted above.  We don't usually feel like heros, though, do we?  We just do what we need to do.

Our "secret"?...

"He gives us more grace." (James 4:6)...and strength...and hope...and patience...and love...and...whatever He deems necessary to equip us for the task He's entrusted us with.

Blessings!

Bev

 

Hallo Bev,

 Thank you - will definitely get hold of your book.

I think it was Elisabeth Elliot that said in times of adversity you have to get up and do the next right thing.

God bless all, Anje

John 9:1-5

A while ago I related to my husband a – although well-intentioned, but still, thoughtless comment I received regarding parenting a severely handicapped child.

Willie listened to me and then asked me what my reactions would have been towards a parent with a disabled child before Ingrid was born. And that got me thinking.

To be honest, my reaction would have been that I’m sorry about your child – but I would have been thankful that it was not my child. More or less the same attitude that triggered my complaints.

Every now and then I return to the passage in John 9 on the man that was born blind – I think any parent with a disabled child is familiar with this passage. I remember a few people quoting this passage after Ingrid’s diagnosis.

Initially I did not grasp the enormous truths in the passage. The question that struck me was that who the audience was that Jesus addressed when He said in verse 3-5 “Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. I must work the works of him that sent me, while it is day: the night cometh, when no man can work. As long as I am in the world, I am the light of the world.”

He was addressing His disciples – possibly the twelve apostles and those who followed Him. The blind man was also there – Jesus subsequently healed him. But his parents are only mentioned later in the passage (verse 18-22). Jesus was speaking directly to His followers – and not to the blind man’s parents.

What did I learn from this?

  • I am a follower of Jesus Christ – striving to be more and more like Him in this life, but still with a sinful nature    
  • Taking care of  a handicapped child has given me vast new insights into parenting – I can now say to other parents with handicapped children that they have my highest admiration
  • Having a handicapped child does not grant me special privileges or a front-row seat in heaven. I have to submit to the will of the LORD – only then will His kingdom come and be witness to His glory and power.  

God bless all,

Anje

Guide

Anje, great insights into this familiar passage. As the parent of an adult child who lives with severe disabilities myself, I agree that probably all of us Christians in this life circumstance have thought about John 9 a lot. And the preacher in me looks at your bullet points and thinks: this would be an outline for a good sermon. Maybe your pastor would think the same; I hope you consider sharing it with him. So glad you found our forum. So far, all your comments have been in the "Introductions" section. You can also add comments to the other topics, or start a new topic to ask a question, express a concern or whatever from the main forum page. Blessings, Mark