“I feel so lonely”… my son just told me yesterday on the way home from school.
He is currently 15 … AND A HALF (I am told to mention). From birth, I knew something wasn’t “right.” He was diagnosed at 18 months with severe asthma and allergies, digestive complications, developmental delay, and immune system abnormalities. We almost lost him more than once. Then at three, Jon was diagnosed with typical autism (originally titled Kanner’s syndrome) and mental retardation. For the next 5 years, I sat in many lonely places … hospitals and waiting rooms, my bedroom, doctor’s offices … sometimes loneliness was pervasive. But such was the road when following all the “early interventions” and promising treatments. Then at age 7, Jon regressed so significantly and no one could explain why. We returned to all the terminal and genetic testing, studies, and more. Then the additional diagnosis included Global developmental disorder, seizure disorder, severe Tourette’s syndrome, ADHD, OCD, ODD, global anxiety and trauma, unspecified but present brain abnormalities, and then some.
If my car could talk, it would tell you I’ve gushed tears and yelled at God more than once; and it would tell you that day in early June there was a lot of gushing and yelling going on. Rarely have I felt so alone. Having hoped in God and every form of help, what happened?
In Dr. Norm Wright’s book Experiencing Grief he says, “Loneliness brings with it a sense of not belonging…a wilderness so vast and rugged that you lose all sense of direction” (pg 36).
I lost my sense of direction. It’s come back, but it took time, lots of talks with God, letting grief speak when there are no words, mercy from others, and professional help.
Our stories may be different, but I understand the experience and I’m here to speak hope into that vacant, vacuous space you may be living in.
To begin, I offer some words that connect to being lost or lonely. Do any of these ring true … isolated, angry, exhausted, confused, like life is over, conflicted, guilty, burdened, cannot sleep, saturated with worry, doubting everything about the faith you believed was sturdy, physically breaking down, suddenly filled with anguish and begin to cry, longing for the life you had, wanting to escape, hating everyone for not understanding? You are NOT alone. When we are lost, our feelings go nuts.
Next, I want to affirm you. I applaud you for seeking this page, I admire your courage, your endurance, and your belief that life isn’t over. I promise…your life will change in ways never expected and you will be filled with unexplainable strength, mercy, gratitude, and thankfulness. I could never be who I am today were it not for the shattering and necessary losses.
Next, always remember you have choices to make every day … even in the midst of countless demands. For example, you choose your attitude, you choose forgiveness or bitterness, resentment or acceptance, humility or pride, to depend on truth or yourself or society, to seek or reject help, to grieve or deny, to learn and grow or shut down and give up, to be a victim or to step up.
The one choice I made that changed everything is to finally accept what God had allowed, release my plans and ways, and embrace Christ and His truth totally. The one choice has made my life full of passion and hope. I want that for you, too. It takes time, but it is a pivotal decision you alone have to make.
God is sovereign, full of grace and mercy, never breaks His promises though we may feel otherwise at times, never sleeps or slumbers, and is close to the brokenhearted. Because I’ve chosen to believe His truth found in the Bible, life is full again.
My son and I talked about feeling lonely yesterday. We talked about choices in a way I hoped he could understand, and we ended with telling God-out loud, in the car-that Jon was lonely and we knew Jesus understood because He was lonely too. We asked the Lord to bring comfort, to help us learn and become wiser, and we cried because loneliness is painful. If you need to talk or have someone listen, please connect with me … or with any of the writers here. We are here to bring you hope … You are not alone.
Darla Thank you for sharing with us and your story has touched my life.
Colleen, thank you for this reference to grief. I am going to write this, but I’m not sure how to keep it short so I apologize ahead of time for the lengthiness of it.
My husband developed tonic- clonic seizures after we were married. I knew before we got married that he had had a pituitary tumor removed three years before that which had been there since he was a teenager but they did not find it until he began to loose his vision. However, other than taking medicine to help his pituitary gland to work, all he really explained was that he had “spells”. He didn’t (nor most of his family) really had a good medical background, so he did not really explain these ‘spells’ very well to me. Plus, he was not seeing any specialists at the time except an Endocrinologist so I was not getting any hint that this was really “seizure” activity. I had worked at a home for special needs children so I knew what seizures were, I knew the different types, and I knew what to do when they happened. However, since no one mentioned “seizures” when it came to my husband, I was not prepared for what has happened over the last 25 years.
With his pituitary tumor, we were told he probably would not be able to have children. That we discussed before we got married – that was all good with us because we felt God was in control, and there were other options. Well, after two years of endometriosis issues with me and the pill making me sicker, we decided to stop the pill and trust God with “whatever”. Almost immediately I became pregnant. We were praising God for this little miracle after all we had been told!!
When our daughter was born, my husband began trying to help me by taking shifts at night with her and still working through the day. Suddenly, when she was just weeks old, he had a tonic-clonic seizure at work one day. Then, I found out the “spells” my husband kept referring to were actually a type of small seizure. I felt a little overwhelmed with a new baby and a husband who just had a tonic-clonic seizure!! However, with seizure medicine, he went 10 years tonic-clonic seizure-free (he still had the ‘spells’ but they were not severe) and continued to work.
Then, he began having a balance problem that no one could figure out, and working became more and more dangerous. Finally, he had to be helped out of the plant in April of 2000 and has not been able to return to work. He, also, began having more and more tonic-clonic seizures during this time – usually at night while he was sleeping so my nights became “the terror of night” (Psalm 91:5) and I DID “fear” night. However, I tried to remain calm for the children (we were blessed with another miracle baby boy born 15 months after his sister in the ‘calmer’ years). Plus, while I’m trying to cope, my husband’s family (because of my background with the special needs children) are telling everyone that “if this had to happen, you are the best person God could have given to him because you know what to do and how to take care of it.” This was NOT reassuring to me when I am watching the husband I married slowly slip away because, with each tonic-clonic seizure and more and more medicines, he couldn’t remember things and his personality was changing. Needless to say, my car, also, has heard a lot of crying and screaming out!! I had to learn to love a new person, and it has been hard.
Through all these years, I felt like I was grieving the loss of the husband I married, but I felt guilty thinking that way because I knew friends whose spouses actually passed away from cancer or heart attacks. All I could think was “you can’t say you are grieving – at least, you still have your husband!!” However, this is not the husband I married so all I felt was loss!!
We did finally find a Neurologist who figured out that the balance disorder was a side effect of the seizure medicine he had been on for those first 10 years – he said he saw it in veterans that had seizures after returning from war and some of them could not even stand any longer. He did feel, though, that if he took him off that medicine his balance MAY come back since it had only been 10 years. However, it never has come back. My husband has compensated for it fairly well as long as he can see something stationary to focus on, but he cannot work that way. He walks like he is drunk which brings a whole other stigma with it – our children have been asked through the years at school if their dad was a drunk. Our daughter has struggled with watching her daddy change through the years, and is currently in counseling (not just for this but it is part of it). She was, also, diagnosed in high school with Late Onset Congenital Adrenal Hyperplasia (CAH) and Posterior Orthostatic Tachycardia Syndrome (POTS) which obviously has added to my feelings of grief – I cannot even begin to imagine her feelings, and as a mother, her pain/hurt is my pain/hurt. I KNOW God is in control and I every day I am learning to continue to trust Him. However, at 22 my daughter’s trust in God is not coming as easily.
Two years ago, my mother-in-law suddenly passed away from a ruptured aorta, and I went through GriefShare’s year of emails – I realized that I truly was suffering from grief with my husband even if I felt guilty about voicing it. I finally talked to my husband about it, and he understood. We’ve been very open with each other so he knew about all my feelings – even having to learn to love him all over again – but until he lost his mom, even he did not make the connection. We are doing better. He has not had a tonic-clonic seizure in 2 1/2 years (almost afraid to say that because the fear is still there a little in the back of my mind – hard to completely think it won’t happen again), but he is pretty much doped up 1/2 the day, and, like I mentioned before, his short-term memory gets worse daily. We have had to set up checks to try to help him because I still need to work which leaves him home alone. He does volunteer two days a week at the hospital where I work, and we have friends/family who check in on him other days by taking him to lunch and things (with all this he cannot drive any longer either). He has taken on the household and is “Mr Mom” as my kids call him 🙂
Just hearing someone else dealing with an illness (instead of a death) and talking about grief makes me feel better about putting my feelings in that context. I pray daily for my husband, our relationship, my children, and I know God is in control. I am loving my ‘new’ husband more and more each day with God’s grace. I cannot say it is easy, though!!
Thank you for posting exactly what I am feeling today. My son Matthew is 11 and our only child. A child who took us 5 years to have. His journey started at age 1. He has Epilepsy, Cognitive Impairment, ADHD, Severe Developmental Delays. Cannot read or write. Immune issues. For the most part I have accepted and know my God but there are days where its just hits you and creeps in. I have walked through the grief stages and I see them clearly but there are just days where something your child says or walks a certain way they it just smacks you and it takes all your strength to not sit and just cry. Choking back the fear and the tears. That is how I am feeling today. So many of you who have replied and also what you wrote just exactly what I am feeling. Like I said most days I fight tooth and nail to stay over that line but today I just want to give in and I do feel alone. Just want to sit alone and let God hold me today.
Melissa, I cannot imagine how difficult some days are for you! Your journey is one marked with many challenges; most of which will reside in your soul. The HUGE responsibilities you have for your son’s care causes such heartache and grief at times…more than you can bear. And thus, the inner struggle to trust in Christ (even when He seems absent), to believe that He will provide faithfully (even when you feel alone or lost), and to place your utter being into His care. As I wrote, there have been many days where such decisions are moment by moment. Not too long ago some of those unwanted waves of struggle and grief pounded away at my heart; you are not alone in such experiences. But as you said, you want to sit alone and let God hold me…that is exactly what is needed. You are right on. It is in the silence that the Lord’s voice or comfort or presence is great. I’ve been at this for 15 years now and find growth happens slowly, over time, and grief is a part of life. All the while, transformation is happening, through tears, fears, accomplishments and days of peace. You are so precious in God’s eyes…keep pressing on. Thank you so much for your authenticity and tenderheartedness. Colleen
Thank you so, so much for this post. It is something I have needing for quite some time! I plan on printing it out, and putting it on my nightstand, so I am reminded all of this when I wake and before I got to sleep. My son was diagnosed with autism a month ago. And I have been feeling SO alone since
Oh my dear AC…only one month. You must be in a headspin of confusion and grief, yet relief to finally have an answer…so much is ahead. I can remember like it was yesterday those first few months…be kind to yourself, expect you feelings to flip-flop all over, remember it’s okay to leave a cart full of stuff at target or the grocery store because you feel so overwhelmed, and write and cry and press on. May Christ become your everything…it is only because of Him that I am where I am today. I didn’t like him on many occasions and he was okay with that…so let him know you and you will be given the strength to take the next breath. I would love to hear from you on the Insight for Living blog and Facebook page as well…been at that since 2007…hoping you will find inspiration here and there. Wherever you find yourself today, it’s okay…YOU ARE NOT ALONE! Colleen
Never lose that sweet connection with God. It is through your son that God will be most evident in your life.
Susan, you are so right. I had someone ask me the other day what was the Colleen before/Colleen after Jon…I had to say I probably wouldn’t have been a close friend to the “before” because my soul had not been crushed. Because of the challenges, the Lord has so tenderly and yes, constantly been at work…replacing the ‘human’ attitudes with more grace and mercy. I bet you have experienced the same. Thank you for your encouragement. May you be blessed today. Hope to hear from you again. Colleen
Colleen:
I met you many years ago at Mt. Herman when we would wait for the nursery to open. My son was a toddler then and now he’s 18 and has been diagnosed on the autism spectrum for 10 years. This was a “real” article that gets to the heart of real life with a child with disabilities Thanks for sharing.
Ruth Stieff (connectingonepieceatatime@blogspot.com)
Ruth, oh my gosh!!! Wasn’t Mt. Hermon a wonderful place..my family has memories so deep of summer camp there. You had to have felt so alone at the time of your sons diagnosis…that was years before much was known about it all. Thank you for your kind comments; how I hope this page brings insight and inspiration to you…and to us all. Thanks so much for connecting. Colleen
Colleen, I love how you weave your own experience of loneliness in to the moment of mentoring your son in his own. It’s so true, God’s got us in a very lone-ranger place so much of the time as SN parents. Praising God that we can at the very least comfort our kids and others with the comfort He’s given us!
Laurie, thanks so much for your wonderful encouragement!! I used to run from those ‘lone-ranger’ moments but having read much of Nowen, Tozer, Wright, Piper, and yepper, my dad’s stuff; I’ve learned the quietness is when I grow as I invite God to be with me. Of course, there’s lots of kleenex…or the roll of toilet paper works wonders…but in this, we are not alone. So thankful to be a partner with you on this page, Colleen
Absolutely beautiful. Thank you for bearing your soul through this beautifully written post. You and your son are both in my prayers!! I am believing for peace, strength, and a refreshing from the Holy Spirit! Please let me know how else I can pray for you/your family. Blessings! Krissy
I have 6 yo twins with ASD, so I feel what you are saying. We have not had some of the physical struggles you have had, you are brave and I think you for sharing. Mine have been dx’d now for nearly 3 years and I’m still grieving. I’ve read that the stages of grief are not progressive but a circle, and I wind up sad a lot, but friends and God do bring me out of it. Thank you, again, for sharing and continue to be strong. I have A LOT of the same feelings as “lostinprairies” had.
My new friend Tina, I cannot imagine the pressure of Twins…it’s double in every way…physically and emotionally (and in every way with ASD). Elizabeth Kuebler Ross (sp?) was one of the pioneers in the field of brief study. Most seem to find her grief work helpful and it is in some ways. However, I agree with you…there is not end…as if the 5 stages are progressive and then the other side is happiness. Like you, grief is circular…several years ago I was in a tough spot, told my therapist “how come I’m feeling this again…isn’t it supposed to pass”. Such a wise reply…he said grief is circular but you don’t end up on the same spot you were before. It’s more like spiral…I have learned when those painful places surface again and again, I gain insight, wisdom, direction, and greater intimacy with Jesus Christ. It’s transformation rather than static. Of course sadness will raise it’s ugly head again and again; yet scripture reminds us that “in this world we will have many sorrows”…not you may have or they will go away…but we will have. Part of that purpose is for us to long for heaven, to release our grip on our own plans or expectations, and to seek Christ for the next step. Since I don’t have a magic wand and can take the pain away, I promise to walk along side you and encourage you always. Thanks so much for sharingyour thoughts with me. Colleen
I felt your pain as I have been there. Both my sons have received ASD diagnosis. I remember taking my youngest to his appointment and bargaining with God. Didn’t I have enough on my plate? Didn’t I deserve to have 1 normal son? Then I had to face the reality. It wasn’t anything I did or do. It just is. I have had to embrace the fact that life seems unfair sometimes. That it is painful. I have also had to embrace that God didn’t make my children ASD to punish me or test me. They were created just as God needed to use them. They are perfect in His eyes and should be in mine as well. I still struggle with these truths but as you write you can chose to be a victim or not.
Dear Lost, thank you for your words…how true they are. We seem to move from being lost to all kinds of emotions…the then one truth “to embrace that God didn’t make my children…to punish me or test me…created just as GOD needed them to be…perfect in His eyes…” It thrilling to hear that from another parent because that keeps us all from the victim decision. Should we choose to disagree with what God says is perfect? NEVER. What a wonderful perspective. You are blessed and I thank you for spreading this truth to all who read your words. In thankfulness, Colleen
Dear lostinpraries, thank you for your words…how true they are. We seem to move from being lost to all kinds of emotions…the then one truth “to embrace that God didn’t make my children…to punish me or test me…created just as GOD needed them to be…perfect in His eyes…” It thrilling to hear that from another parent because that keeps us all from the victim decision. Should we choose to disagree with what God says is perfect? NEVER. What a wonderful perspective. You are blessed and I thank you for spreading this truth to all who read your words. In thankfulness, Colleen