Wednesday, May 13, 2009
Questions
What are your hardest struggles with raising a disabled child?
How has raising a child diagnosed as disabled affected your marriage and your other children?
If you could ask God one question or tell God one thing, what would that be?
What support has provided the most help/the least help?




Praise to our Lord and Savior Jesus Christ. In the 1980's I drove school bus for special education students. Now I seem to bond well with my 3 year nephew of down syndrone. Could my slow ness, not stupid, (as Forrest Gump used to say) could pronounce my own adult possible autistic challenges and possibilities. Praise God for however we learn of our full potential and promises, and wait for HIS timing. Amen
Posted by: Roger (Hunt) Frost | Friday, May 29, 2009 at 04:04 PM
When I heard Chuck talking about how there will be a special needs series today on the radio,my heart just melted!Then I heard about Coleen!! What an answer to prayer!!This means everything to me,it's like the hand of God reached out to me today and then He wrapped His arms around me! What a blessing your ministries are to me!
1.I am surely in a place that is very isolating,stressful,and weary and I have to handle it alone as a single-mom. I have a severe form of Fibromyalgia,so I am in pain all the time,my muscles feel like they are twisted in knots and I have burning all through-out my body,I am 28. My son has ADHD and at-risk for autism,he is 4. He is high-functioning with alot of behavioral and aggression problems as well as a severe speech delay. I thank God for every good day!!
2. I would ask God the question, "Why do I have to do this alone?" And I ask Him that quite often! Raising a child with special needs is hard enough when you have your health. It does not bring out the best in me,and it breaks my heart for my son to see me falling apart on a daily basis. I try to be strong,and I have a very close relationship with God because of all my wearines. It is His strength I have in me,I couldn't do this in my own strength!
3. One thing I do is read all kinds of books,listen to messages and radio ministries constantly. They are truely for me.I also write alot and keep a journal of how God helps me through these challenging days. I use it to look back on for encouragement for myself or others. Also I can describe the meaning of the book of Psalms now, I understand why it was written and how God uses these chapters to reveal God's infinite love,mercy and understading to His children.
Posted by: Courtney | Friday, May 29, 2009 at 08:43 PM
When I heard the introduction to this series tonight, I cannot tell you what relief I felt. I've been on this journey - mostly alone - for 9 years. My son has so many special needs. And his future is looking less bright. I have never had a group of other mothers of special needs children to share with, cry with, just talk to... Until Nov. '06 I single parented him & held down a highly responsible job (which I once loved). But meeting all his needs came first. I am not permanently disabled due to the heavy burden I could no longer carry alone. I am so hopeful this will help us.
Posted by: mother of Chad | Friday, May 29, 2009 at 10:40 PM
This was such a blessing to me today. I have four children, three of which are special needs. My fourteen year old daughter and my nine year old son both have Asperger's Syndrome and my twelve year old little boy is fully Autistic.
I love these kids more than life. Our oldest who is sixteen, does his best to understand and is fiercely protective of his siblings. Yet it has been a hard road to say the least.
My youngest was diagnosed last year and on the way home from the hospital, while he slept peacefully in the back seat of our car, I cried harder than I think I ever have before, it broke my heart. I had watched his older two siblings go through the looks, stares, comments, the abuse of school mates, etc, etc, etc, and I just did not want that for him too.
I will admit that I came home that day and could not bring myself to pray. I wanted answers to questions like "Why? Why all three of them" and then there were the issues of guilt, blame and just grief.
Their father was out of the picture before this and yet God has blessed them with a step father who adores them and who they adore in return.
He came into our life and knowing what he was getting into, jumped in with both feet and has never looked back.
This journey has not been easy, it's not always been what I had envisioned and yet I KNOW that God's grace is sufficient and that I am blessed. I learn so much from all four of these special, amazing people and in Matthew where it says "Blessed are the pure in heart, for they shall see God" well each time I read that, I know God had special need kids in mind.
I am so grateful for this series. It's like a balm to my heart and Colleen thank you so much for being so honest and transparent. You spoke a lot of what many of us only think about and for that I am grateful. I am looking forward to this series with much anticipation.
Posted by: Mom of Four | Saturday, May 30, 2009 at 01:51 AM
Giving birth to two daughters in the 70's, I unwrapped the tiny pink blankets with no other concerns except that all the cute little parts were there in their proper place. Thirty years later I watched the nurse give my grandaughter her first bath, never guessing that 5 years later she would be diagnosed with Asbergers. I've cried with my daughter for this beautiful little girl and I thank God for Colleen's sharing of this personal message. You moms are pioneers and my prayers are with you that you will band together and God will use you mightedly to sustain each other and to victoriously run this course that he has designed for you. You all give a whole new meaning to the title and responsibility of "motherhood".
Posted by: Sharon Oliphant | Saturday, May 30, 2009 at 06:48 AM
I am excited that you have revived the Special Needs section again from a few years ago, and have included this blog!
We have 4 boys; 15, 13, 11 and 8. Our 13 and 8 year olds have XLIS, (X-linked Lissencephaly). Both are non-verbal. Our youngest also has seizures. Although our 13 year old is seizure-free, he has Sensory Integration Dysfunction issues. Our family also includes a still-born twin of our first-born.
1.My hardest struggles change, depending on the age/stages of our boys. Currently, my biggest struggle is feeling like there isn't enough of me to go around and that I'm failing at it all. All of my boys (and my husband), need my attention in one area or another. It's a challenge to make sure our non-disabled boys and my husband don't get lost in the mix.
I also struggle with other's lack of understanding and/or acceptance of my boys from others. I've accepted the fact that as far as others go, I will always be an educator/advocate for my boys. But, nevertheless, it does get tiring; especially, when people who've known our family for years still don't get it.
My other struggles often have to do with communicating with my two boys. They both are effective communicators through the use of Dynavox talkers, PICS, very limited vocablulary, and, of course, their smiles, frowns, tears and yells. But there are times when I just don't understand...like when they lose their glasses for the 5th time and can't tell me where they're at!
2. Our marriage: I think we are closer because of the loss of our still-born and having boys with special needs. We've endured a lot together. At the memorial service for our son, our pastor told us that this could either pull us apart or bring us closer...so resolve to pursue the latter. That was great counsel for what was ahead. It hasn't been easy a lot of the time, but God has never given up on us and we have never given up on each other.
3.Oddly enough, I wouldn't ask God, “why”. I stopped asking that after our son died. God has shown me Himself, that HE IS, that He knows why and that THAT is enough. I would ask God why there are those who just don't/won't see any value in these Special boys. To me, one of the primary ways God reveals Himself/speaks to our world is through those with Special Needs (children, adults, those who don't have a voice). And perhaps, maybe that's the answer; that they don't want to see God. I have learned so much about God, who He is, my own humanness, and who I am through the gift of being these boys' mother.
4.God has blessed me with a husband who walks with God, is strong, steady, compassionate, sacrificial and who really loves all our boys! I think, these days, there are very few men out there who would wholeheartedly walk this journey.
We also have a really strong educational support system. Both boys have had a couple of the same therapists since they were two. We also live in a community which has excellent Lifeskills/Special Ed programs. Our boys wouldn't be where they're at if it weren't for these committed teachers/therapists/paras etc.
Posted by: Cheryl Samples | Saturday, May 30, 2009 at 10:16 AM
Thank you, Colleen, for serving us in this way. This ministry will be so helpful to so many!
Posted by: Wayne Stiles | Saturday, May 30, 2009 at 11:18 AM
Thank you, Chuck and Colleen, for the comfort and affirmation of this series. As the mother of a grown son who is bipolar, I have been told at church that he is demon-possessed, and that I just haven't prayed enough or correctly. Where other parents eagerly share the progress and milestones in their adult children's lives, my husband and I sit silently, grateful for a month of emotional balance or a season of employment for our son. I try to focus on the fact that God is at work in our son's mind and that He rejoices each time my son makes steps to manage his disorder. I work (and sometimes it's very HARD work) on finding joy in each situation, learning to love and value and enjoy my son in the same way that God does. Please include parents of emotionally challenged children in your messages. Thank you for reminding me that they are all "fearfully and wonderfully made."
Posted by: claudia | Tuesday, June 02, 2009 at 10:46 AM
About a week ago I was told that my unborn baby boy has a lethal skeletal dyspasia called campomelic dysplasia. He has a very small chance at living and we are told that he may live days or weeks, but these babies usually have respiratory problems that take their lives. There are children that survive and in the last few days I found a group of parents for support. My husband and I are struggling with the question of why God would allow our child to be born only to suffocate and hearing the message today has opened our eyes. I look forward to the rest of the series and ask for prayers for healing and survival for our baby boy. Please also pray that we will understand God's will in our "special delivery" - God Bless- Jenna
Posted by: jenna hood | Tuesday, June 02, 2009 at 03:00 PM
My hardest struggles involve feeling as though I am not doing enough for each of my children who have disabilities.
I have 7 children: my 17 year old daughter has Tourette's and PCOS (Polycystic Ovarian Syndrome). My 16 year old has Asperger's & Tourette's. My 10 year old has Asperger's & Chiari Malformation (type 1). My 7 year old twins (boy/girl) both have Chiari Malformation & tethered cord and have had 3 brain surgeries & 2 spinal cord surgeries between them. My son also has Autism & ADHD. My 5 year old son has PDD-NOS, Apraxia & Dysarthria. And my 3 year old son has Spina Bifida, Chiari Malformation, Gastroparesis, is g-tube fed & cathed every 4 hours. He is currently being evaluated for a mitochondrial disease, has had 14 surgeries & has 2 more scheduled on July 7th. All 7 of my children have a connective tissue disorder.
(How has raising a child diagnosed as disabled affected your marriage and your other children?) My husband works hard to support us so I can stay at home and take care of the kids (I also homeschool) and their medical needs. He does not get involved with the medical side of things ~ he doesn't cath our son or tubefeed him, he doesn't take kids to appointments or therapy and he never deals with our youngest when he's having surgery. My husband and I are friends and we do love each other, but there is rarely any time for intimacy and, as such, we're more like friends/roommates than husband & wife. The constant stress of having multiple children with multiple special needs takes its toll.
(If you could ask God one question or tell God one thing, what would that be?) I would ask God to show the doctors & myself what is the underlying condition causing my youngest's ongoing medical problems & to provide a way to treat it so that he could grow up to live a "normal" life.
(What support has provided the most help/the least help?) Online friends have provided the most help... talking to other moms and realizing they often go through the same weird experiences I do and therefore understand perfectly how I feel about things has been a tremendous help. Just knowing I'm not alone is helpful. On the flip side, seminars & conferences aimed at parents of ONE autistic child or ONE disabled child... or seminars that are so prohibitively expensive that lower middle-class parents can't possibly attend are UNhelpful. Oh, and doctors/therapies that are too expensive for the average American to afford are not helpful, either. Being told that I may have to "get creative" to afford treatment my children need (speech, OT) is extremely unhelpful, as well, because if you don't have the extra money, you just don't have it, and it's not like there are any organizations out there that want to provide a van with a wheelchair lift that is also large enough to transport my entire family or other things that would make life easier for my children... parents don't need to have guilt from society heaped on them for not being able to "do" everything possible for their disabled kids, especially if they're doing the best they can.
Posted by: Kate | Wednesday, June 03, 2009 at 12:16 AM
I would like to thank Chuck for the disabled teaching today 6/3/09. I happened to tun the radio on when teaching. It grieves me that more aren't contributing to the ministry you do so much excellent teaching I do pray God opens the mighty windows of heaven pouring blessing into the ministry! My wife and I have two children with down syndrome, Adam & Cori, boy and girl 16&15. I've learned many things with them and my wife's help, she used to teach pre-school. Five years ago she lost her leg above the knee due to infection from the surgery. I, too am on disability with two challenges. Each and every challenge we have faced Jesus has brought us through. Thank you and your daughter! Blessings always,
Keith and Shery
Posted by: Keith Nighswonger | Wednesday, June 03, 2009 at 11:34 AM
I'm a divorced mom of a 22 yr old son who has autism, mental retardation, OCD, is non-verbal, and has had occasional periods of severe aggression. Let me tell you, I've been thru the wringer. Every day, sometimes every hour, is a challenge. Stares in stores, water in my ketchup bottles, receipts eaten. Faith gets me thru and I've received many answered prayers. Why me God? Because I will be by your side and I chose you because of your patience and your love of children. That's what I believe to be true.
Posted by: Peggy | Wednesday, June 03, 2009 at 05:20 PM
Thank you for sharing your lives with others. Thank you for starting a conversation where God can come in and heal. We have two sons, the oldest is in college, and is typical. The younger is 13 and is deaf (25 percent hearing loss) and Autistic. Your entry about going to the Doctor's office, and getting the diagnosis; that is my experience too. We have done all those therapies you listed, and each one helped. 1-My hardest struggle is with patience. 2-How affected our marriage? The diagnosis of Autism is like a bomb going off in your house. The shrapnel flies everywhere and hits each family member. Only you don't see where they are hit and bleeding because it is emotional shrapnel. 3-Question for God? Tell God? I don't know. 4-What support helped the most? My husband. He loves our disabled son and is proud to be his father. When we needed extra money (for therapies and doctors that insurance did not pay) he took a second job so I could continue to stay home with both of our sons. He is my hero. Thank you for a place for Brothers and Sisters in Christ to talk about this topic. God Bless
Posted by: Nancy | Friday, June 05, 2009 at 06:38 AM
Thank you for this series. It has come at a God-ordained time, as we welcome our 22 year old daughter back home. Since her fathe abandoned us when she was born, I have struggled to help my daughter, when it became evident that something was wrong. I have wept and prayed - and still do - as what is some kind of mental illness creates such chaos in her life and ours. We continue to seek an accurate diagnosis, to seek help as a family on how we can best cope with the emoptional outbursts, anger, broken relationships and struggles as school has not worked out and keeping a job seems so hard for her. I am thankful that the Lord provided us with a godly man just 5 years ago who is such a blessing. I am so thankful for Chuck's compassionate, truthful and solidly scriptual teaching in this series. As I listen I have wept, given thanks and taken strength and insight for our living. Thank you. God bless.
Posted by: Christine | Saturday, June 06, 2009 at 02:13 PM
Thank you so much for this series! I am a divorced mother with two daughters, the oldest with Asburger's syndrome, among other nervous system impairments. The youngest is extremely bright and resentful that she ended up being a surrogate mother in the afternoons after school, because I was forced by the (unwanted) divorce to work outside the home. Before the divorce, I was a stay-at-home mom, and it was impossible to properly take care of everyone, because the disabled daughter required so much of my time and emotional energy. The hardest thing to deal with was her extreme emotional volatility and waves of depression, where she blamed God for her frustrating life. My husband, who also displayed some symptoms of autism himself, was like a 3rd child competing for my attention, rather than a father to my children. In the middle of this impossible situation, the Lord brought me to my knees, where I cried out to Him -- "Help! I can't do this anymore!" And He did -- bringing me across the country to a church where people who knew Jesus in a deep way helped me through a very dark chapter of my life. The children are grown -- ages 34 and 30 now -- so this is largely history. However, the scars of all the emotional trauma to our family still remain, although the Lord has been very gracious to bring us through a very dark valley. He provided the proper resources to help my daughter out of a very deep pit of suicidal depression when she was 29. At that point, she was finally able to leave home and rent a room somewhere and provide for herself. Hallelujah! I praise the Lord so much for that! Now, however, she does not let me see her anymore, probably because she is afraid of falling back into dependence on me. That is very hard. Has anyone else experienced something similar?
Posted by: Patricia | Saturday, June 06, 2009 at 07:59 PM
I prayed for one thing only before each daughter was born. That they would be average. "Please no disabilities, and for heaven's sake, give the beautiful geniuses to the millions of parents who seem to want them so badly! Average is fine with me!" And each time God said no.
Tomorrow is D-day. (diagnosis day) For my sweet, amazingly pure hearted and loyal Gracie I anticipate moderate dyspraxia, Tourette's, ADHD, Sensory processing disorder, along with Celiac disease, allergies, and a somewhat severe vision problem. A lifetime of struggles.
And child number two--the "golden one" who shows tremendous aptitudes in all academics, music, sports, animals, dance, as well as overwhelming beauty, charm and insight into people and situations. Not to mention being motivated and ambitious and tenacious. May I say that giftedness can be it's own disability of the soul! Proud, stubborn, wise in her own eyes--foolish--determinedly so.
I feel so stretched, and brokenhearted over both girls right now. To say that I am equal to the task would be like saying a drop of muddy water could quench the thirst of an army.
But God...
Thank you for your openness about feeling angry and having very dark seasons. I am in a valley of shadows right now, and just hearing that others go through it and there is still light in the world was so encouraging. Sometimes I think that if I start crying, I may never stop. So I live in my head--in what I know to be truth, and press on. But sometimes I forget to grieve--hearing you speak opened that up for me again, and I thank you. I am refreshed by it.
Blessings to you, and I look forward to meeting you in that place where there are no more tears and sharing stories of God's faithfulness, and love, and provision, and grace.
Posted by: Deanna | Tuesday, June 09, 2009 at 01:26 PM
First of all thank you for your ministry.
1. The hardest part for me was telling my son he was different from other kids and trying to answer his question...Why did God create me this way? As I was going through my own battle of Why.
2. Divorced from his father, he didn't accept the fact he had a disability, he left us both.
3. This stage of both our lifes, I would tell God Thank you for a wonderful, beautiful son He had given me because I couldn't even imagine not having him this way (my son has Aspergers).
Don't get me wrong it took us both a long time to get here my son is now 21 yrs old.
4.The best help is speaking with other mothers that are going through the same thing and knowing you are not alone. God blessed me with friends of kids that have Aspergers (some Christian, some not). Unfortunately, I would have loved to say youth groups or even church but it wasn't the case because they didn't get my son. My child would tell me they are no different then kids at regular schools. To this day he still cringes thinking of being in any group. He will go to church with me to hear the Word but that will be it. He loves the Lord, and since he is literal takes God's Word literally. (Love that part).
Bless you for your ministry and I look forward to reading this blog. We all go through things for a reason right.
Posted by: Annette Balzano | Tuesday, June 09, 2009 at 01:57 PM
Patricia, I have a 28yr old son with Down Syndrome and a 32yr old son who is in denial that something is mentally wrong with him as Personality Borderline or ADHD undiagnosed who is very smart and bright. I didn't experience his anger, outburst, high and lows behavioral in early years. He cannot keep a job, he has seperated himself from the entire family, his outburst of emtions is out of control, he has no repect for me as his mother and show no remorse, also his thinking is distorted. Therefore, it's good to know someone else understand the pain. Sometimes, I really want to hate my son but God keep showing me His kindness toward my weakness and who am I to give up on my son. I thank God for not giving up on us as parents in the midst of our pain with our childrens no matter what's the age or disability. I realize God grace is sufficient and my son belongs to Him now and my job is to never give up and to never stop praying but to trust His will. The patience of Job that teaches us about endurance and humility.
Posted by: Rose k. | Thursday, June 11, 2009 at 12:53 PM
Christine and Annette: I want to express my sorrow for your situations that continue. I often wonder if the Israelites-oppressed and beaten during the Egyptian captivity-felt this way too. Exodus 1 speaks of the Egyptian enslavement as "ruthless"; becoming worse as years past. Their children were killed, the plagues were horrid, yet God remained sovereign. One of my favorite verses in Bible is found in Deuteronomy 8:2 and I paraphrase the words of Moses...remember how the Lord God led you in the desert for 40 years...to humble you, to test you, to examine what was in your heart; whether you would keep His commandments. I don't know the purposes or plans of God, but I am told that such desert-like circumstances are allowed as I am tested and humbled through them. I wonder if Jesus also felt this as His own father allowed His death for a greater purpose we now are offered called grace and forgiveness. While you endure the hardships, may you find hope in the word of God. Though we don't understand suffering, we can remember His promises are true and that He is faithful. May your obedience be honoring to God and a witness to others. Colleen
Posted by: Colleen Swindoll | Friday, June 12, 2009 at 01:47 PM
Thank you for this series. It has been very encouraging. Thank you so very much.!!
Posted by: Holli | Friday, June 12, 2009 at 06:50 PM
Here are my answers to the questions:
1. Some struggles are : a. realizing that so many people, even christians ,do not really understand your child's condition even when you have exlpained it many times. I have quit trying to explain her condition, it is so rare most will never understand and it really does not matter anymore. We love her beyond measure and know how to care for her and God is right with us! :)
b. Being let down by fellow church members and friends at times.
c. Finances sometimes.
d. Knowing there is currently no treatment or cure and very little research.
e. Not getting invited to birthday parties of other kids the same age.
f. Seeing Grandparents not spend time with her when they could.
#2. I think our marriage is stronger. We look to the Lord and I think as a family we are more connected and more considerate of each others feelings now. As for my other child, she has done amazingly well. She is special too in her way, and is very mature for her age. We don't always get to go to things when little sister is sick and sometimes my other child wishes we could but when we can go ,we do and it all works out!
#3. If I could ask God one question, several years ago it would have been why my baby? Now, I am not sure. I really don't know.
#4. The most support I think has been from God! He gave us a precious angel and we thank Him for her every day. He has provided her needs and some of the best support has been from therapy, school system, old friends, Childrens Rehab. , and of course wonderful doctors.!
Again, thank you for this series.
God bless.
Posted by: Holli | Friday, June 12, 2009 at 07:44 PM
I am so excited about your new blog. It will be a blessing to follow along with you.
Special needs has rocked our world. Both my husband and I had worked with special needs adults and children and loved them with all our hearts, but when we we had twin autistic children things got much harder. My children are 5,5, 3,and 2. My boy twin is often violent when afraid or confused, but others simply see it as rude, and me as a bad mom-even family and church members.
We ended up leaving our church due to a teacher biting my son in the face. at age 3 for him trying to bite her. So my hardest struggles is the judegment that your are a failed parent, or not a God fearing parent by the struggles my children endure. I also struggle with lonelyness.
My marriage got a lot strong because we started this marriage with God first...and that one little fact has made the difference. When my husband and I disagree I take it to the lord and get new strength for each day. Strength to strength I walk. But if we did not have that we would have not survived. Hospital bills, special food costs, family and friends leaving, takes its toll.
My one question to God would be could he give me some assurance that my childrens souls are sealed since I can not say they will every be able to verbalize or make that clear. I can not find anywhere in the bible where a family member can save a child or adult. This hurts me that I have to live my life not knowing if my children will ever believe.
My best suppport has been the few brave women in my ladies bible study that approch me like I am normal ,for a hug, or a back pat and a hi, when I have a little boys teeth sunk into my arm. I can not say how two older women has keep me on my knees before the lord instead of running away like I so wanted to do. We are a family that still needs love even though we look scarey.
Posted by: Stacy Williams | Saturday, June 13, 2009 at 04:01 PM
I am so excited about your new blog. It will be a blessing to follow along with you.
Special needs has rocked our world. Both my husband and I had worked with special needs adults and children and loved them with all our hearts, but when we we had twin autistic children things got much harder. My children are 5,5, 3,and 2. My boy twin is often violent when afraid or confused, but others simply see it as rude, and me as a bad mom-even family and church members.
We ended up leaving our church due to a teacher biting my son in the face. at age 3 for him trying to bite her. So my hardest struggles is the judegment that your are a failed parent, or not a God fearing parent by the struggles my children endure. I also struggle with lonelyness.
My marriage got a lot strong because we started this marriage with God first...and that one little fact has made the difference. When my husband and I disagree I take it to the lord and get new strength for each day. Strength to strength I walk. But if we did not have that we would have not survived. Hospital bills, special food costs, family and friends leaving, takes its toll.
My one question to God would be could he give me some assurance that my childrens souls are sealed since I can not say they will every be able to verbalize or make that clear. I can not find anywhere in the bible where a family member can save a child or adult. This hurts me that I have to live my life not knowing if my children will ever believe.
My best suppport has been the few brave women in my ladies bible study that approch me like I am normal for a hug, or a back pat and a hi, when I have a little boys teeth sunk into my arm. I can not say how two older women has keep me on my knees before the lord instead of running away like I so wanted to do. We are a family that still needs love even though we look scarey.
Posted by: Stacy Williams | Saturday, June 13, 2009 at 04:01 PM
I hate my life right now
Posted by: Pam Oliver | Tuesday, June 16, 2009 at 11:32 AM
Pam: I'm sorry you are in so much pain... many of us know what that feels like and have spoken those very words. I'm praying.
Almost 5 years ago my oldest child was diagnosed with classic ("low-functioning") autism. Looking back I have no idea how we ever got to today (much of it's a blur anyway)as we've "roller coaster road" our way through self injurious meltdowns, 2-3 year wait lists for services, sleeplessness, black eyes/bloody lips, rude comments/stares from strangers, destruction of valuables and years of silently waiting for the words "Mama" and "Dada". Over the years I have questioned God's goodness, sovereignty, wisdom...well, you name it I have questioned it and probably shouted about it! But at the end of the day if I push past the frustration and pain, I know God IS Good (and it's good for my head to write these words, since I'm particularly frustrated today.
1. Some of the hardest things for me raising a disabled child are: Exhaustion, unpredictability of each day, balancing needs of everyone in our family, loneliness, exhaustion (oh yeah, already said that), confidence as a parent, "lost dreams",in-laws (they blame me), cruel comments/judgment from those who do not know, finances on occasion, what if I die who will take care of the kids?, helplessness that comes with being unable to communicate with our child or witnessing self injurious behavior etc.
2. Some days are really good ones for our family and others are really bad. Just like some situations have been strengthening for our marriage and others have been testing/taxing. Every once in a while we get a "chocolate cake moment" like last week my two daughters were chasing/tagging each other in the back yard and laughing together...on a scale of 1-10 that was an 11.
3. If I could ask God one thing it would be "Please make room in your kingdom for my daughter". I've never really found any biblical clarity on salvation for babies/disabled people and I worry about this often. It is particularly concerning when dealing with a child like my daughter who is NOT considered mentally retarded but who struggles so severely with communication and abstract concepts.
4. God has put some wonderful people in our lives both christian and non who have been a real blessing to us. I remember one very terrible day in the early years where I packed the girls in the stroller and went to the grocery store just to get some fresh air. The girls were both asleep by the time we got to the store (the first and last time that happened) and I just walked through the store like a zombie when this lady walked up behind me put her hand on my shoulder and said "Your doing a great job, your kids are so lucky to have you as a mom". I whispered "thank you", walked out the door (to keep from crying in front of her)and never saw the lady again. That 30 seconds got me through months of bad days and may have saved me from driving off a bridge that day(seriously).
Posted by: Liz | Tuesday, June 16, 2009 at 07:56 PM