To The Mom Stressed and Worried About Her Child’s Health

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Dear worried and stressed Mom,

I see you. I see you smiling and hustling and bustling through life. Going to work, working from home, in the grocery store, running the roads, the parks, stroller in toe. Happiness and laughter, but with a slight twist of hesitation. I see the shadows lurking in the corners, ready to stomp across the sunshine in your eyes. The imminent gray that grows and swells, and in a moment, will envelope your happy – if you let it.

I see you going about your day, responsibilities and regrets. Worries if you are spending enough quality time with him. Phone calls to doctors and therapists can wait – but they can’t…I see you pulled and stretched, molded and shaped in directions of choice and directions of fear. Like warm, pulled putty in a toddler’s hands, you’re thin, drooping and sagging. Good, bad, insensitive and well-meaning remarks – they all cling to you, lost in the sticky sea of your soul, they become a part of you. Don’t let them become you.

I see you late at night, wearily standing at your kitchen counter, drawing weekly meds. You wait until he sleeps, for this disease has robbed enough of your time together – you will give no more. While most have a junk drawer, yours is chock full of medical supplies and drug interaction pamphlets. I know what’s in your head – with every pull of the plunger, filling a vial higher and higher, flick of the syringe – this isn’t fair.

Doing this isn’t fair. Being here isn’t fair. This life is sometimes so unfair. So full of hurt you can’t explain unless to another who has also been there. You hurt for your child, although they know no different – you do. And you weep inside and out for what they must endure. You weep because you feel helpless, powerless and you must watch them endure.

I see the pain behind the smile. It lurks in the words of positivity you often speak. You can’t fool me. I know you. I know your scared, overflowing, joyful and broken heart. I know it has no bottom for that dear one you adore. I know it stings. I know it’s sore.

Momma, I feel you. I feel your heartaches, your nausea, your headaches, your sleepless nights, the hesitation in your step as you drag yourself forward because –  THERE. IS. NO. OTHER. WAY. I feel the desperation in your longing – the day you pray will come – when worry of health and sickness will wither away, wash away. Please – take all this away.

I hear your heart stop when the doctor enters the room with results. When a fever is never just a fever, a cough is always something more, weekly therapies, visits to specialists and the ER are your normal. I know the staggering halt that encompasses your entire being. When the world stops revolving and begins spinning, spinning, spinning, out of your control. I know you want to make it stop.

I smell the sweet victory when you can overcome that fear – fight the foe with all that is in you, and then nestle tightly in the quiet moments where the intoxicating scent of your child’s head, the stroke of your finger along his soft and fleshy cheek, holding tiny feet in the palm of your hand, is the elixir of all that is right, and good enough, to always bring you back. Back to carefree, worry-free, stress-free. Even if only for a little while.

I see you there. Soaking in every. precious. moment. Because we know too well, Momma, another one of these is never guaranteed.

I see you playing with him, chasing, tickling, giggling, loving. Wholehearted love. Fierce love. Love that defies anything this messed up earth could bring. A love that fights, hopes, and a love that stings like no other when you find you are helpless to the illnesses and diseases beyond your control.

I see you struggling to keep it all together, Momma. Fighting back the tears, the lump that grows in your throat that you never let out – can’t let out – are afraid to let out. I see you change the station because you simply cannot listen to “that” song – not today, not now. Maybe not ever. I see you congratulate a new mom, and I also see you cry in secret as the pain of your own losses, missed opportunities and anger over a cruel disease, overtake you. I know the guilt you will feel – for everything. For being too much, too little, not enough, wanting more, having more than you believe you deserve. For wishing your child never had to endure life living this fear. That you, wouldn’t have to live this fear.

I know that sometimes when you cry it comes out of your eyes, but sometimes, many times, it just stays in your soul.

I see you strong, Momma. I see you now. I’ve seen you in the past and I know I will see you again. Please listen to me. Read my words. Take my words. You are stronger than you know. You have more fire and feist than a pen of wild bulls, because this is your baby – your heart, your soul. When you feel weak and fragile, like you can’t even make it to your pillow – trust. With all that is in you, trust, and keep your faith close. Power comes in times like these. Strength comes in times like these – where in that brave, costly, intentional action of the heart, pure love wholly lives.

I know you, Momma. I hear you and I see you, and we never need words to speak what we know of each other in our hearts. Your worry is my worry. Your fear is my fear. My strength is your strength – so take it. When you are running low and weary from the fight, press on. When your chest is heavy and you can’t breathe, see the beauty in front of you, pour your heart into the joy that is before you. Hold that baby tight and carry him through…and I will carry you.

Peace be still, Momma. Peace be still.

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65 thoughts on “To The Mom Stressed and Worried About Her Child’s Health

  1. Although I went through this all 31 years ago it is still fresh in my mind. Even now at 31 and an adult I worry silently every day. My questions to her now are general I don’t want to constantly ask how her “heart” feels. When she does say she doesn’t feel well that awful feeling in my stomach is right there ready to come back and eat away at me. You described everything so perfectly, everyone around you thinks you are enjoying that family BBQ but your mind is constantly on alert in case something goes wrong. You never ever let your guard down.
    As my daughter got older and started to drive, go to university and two years abroad in korea( terrifying, caught H1N1, and broke her tibia and fibia requiring surgery in Korea) getting through those issues, calling her cardiologist to be a liaison in her care in another country was even more terrifying.
    She got through all this is now married and I can relax a little bit knowing she has a husband to protect and care for her. You do start forgetting that feeling of dread and it only comes back periodically. You will get your peace as they get older and become adults. Thank you this letter was beautiful.
    My daughter was born in 1986 with a complex heart and a form of spinabifoda. She has endured many surgeries including the Fontan , followed by pacemaker. You will get through this.

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    • Thank you for sharing, Karen. You and your family have been through a lot. It seems each day presents new challenges, new diagnoses…it’s difficult to face some days. I find some peace in knowing that no matter what, we will be okay, we will be provided and cared for by a loving God.

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  2. Thank you I really needed to read this now . the pressures and the worries get too much to handle. I pull myself together every day and fight and show my children that its ok and that we can get through this together no matter what the next obstacle may be.

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    • There are so many pressures and worries – you are so right. But all we can do is take one hour – sometimes one minute – at a time. We have no choice but to fight for our babies…and for ourselves. Take care of yourself, too💕

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  3. Thank you for this! I feel as if it was written to me. While I feel so alone in the battle I am currently fighting, it is reassuring to know that I am not alone after all. I am so sorry for the pain you’ve suffered. Please know that you are an inspiration to me and I will add your family to my prayer list. My son (7.5mos) is undiagnosed, but suspected mitochondrial disease. I recently started a blog with the hope of finding others in a similar situation.

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  4. I’m a proud dad of two beautiful boys, one of these affected by hystiocytosis. After one year of chemo treatment, my heart felt so terribly lonely when we discovered a new sign of this disease again. My wife and I have been very supportive with each other but sometimes feel like lost. I don’t believe in God, I believe in being positive but sometimes feel like I can lose this. Thanks for your words, they provide some minutes of self awareness and peace somehow

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  5. Thank you for your understanding of difficult time with children with health problems. My daughter now 51 was born with a cleft palet, missing left hand and dislocated hips, and later in her life developed cardiomyopathy. Has had three open heart surgeries. And along the way other problems came along. All of this is behind me now, but your writing brought back a lot of the same feelings. I am so grateful for my faith in God, and for my late husband’s help and support. May God Bless and be with all of those mothers and extended families.

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  6. Loved this! Every Mom feels this way at one point or another, even with common illnesses. You just feel helpless to see your child sick. Although my 5 month old baby boy doesn’t have a life-threatening disease, he does have a congenital heart defect that requires open heart surgery later this month, and the risks terrify me. He also has some genetic defects, and how he will be accepted by others in the future weighs heavily on me. His pain is, and forever will be, my pain. But as a Mom, I always feel guilty for praying for complete healing for my son, because I know there are plenty of other moms out there who have children fighting illnesses and struggles WAY worse than what we’re going through. So I don’t feel “right” when I have a “woe-is-me” moment. I’m thankful for our struggle because it could always be worse.

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  7. This post has touched my heart . I needed this today . my one year old was born with PKD ( Polycystic Kidney Disease ) and has been through solo much . this past week he received a renal exam where they decided to have him start dialysis sooner then expected – my heart feels so broken and my mind has been all over the place , I felt like I was the only one who felt such a deep pain , so deep no one could relate but this post has given me a big relief . god bless all of you ladies for the strength you’ve carried along the way .

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  8. Those words are so true my oldest daughter has neurofibromatis an optic glioma moyamoya disease adhd she’s had chemotherapy & radiation on a handful of medicines has had burr hole surgery & this past week we have found out she has to have a neurofibroma removed from the back of her neck I’m stressed to the max & needed to hear those words

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    • My son has NF1 as well and is 9 months post chemo for optic gliomas. Tomorrow is another MRI scan and I am a mess. He has been experiencing blurry vision and frequent headaches. It does help to feel less alone.

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  9. Thank you so much for your words. My baby wasn’t born with his disease, he contracted a cold last Fall at the age of 13, and ten days later was paralyzed from the neck down, trached, on a vent. The three weeks in ICU were the most terrifying of my life, thank God we didn’t lose him. Every day is a slog through exercises, therapy, showers…Mostly I’m too tired to cry and feel sorry for us. We’re positive almist all the time, so it’s nice that someone gets it, the hidden fears we live with daily that never, ever get spoken aloud…Those fears that live in the darkest places. Mostly we ignore them (geez louise, who has time to wallow?) but at night? When you can think? Sometimes I scare the night nurse because I just need to stand there touching him while he sleeps.

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  10. All three of my children have varying degrees of issues. Most aren’t life threatening. Just a month ago we found out my dd11 has epilepsy. Never have I felt so hopeless as I did. I try to be strong. So she won’t worry. So family won’t worry. But I’m scared most of the time. I have pockets of forgetting and peace but then it’s time for her meds and I pray she doesn’t have a seizure in the night. Praying I don’t come down to worse. Praying He protects her when I can’t. I’ve never had to live my life with fear always on the background… This really spoke to me. Thank you.

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  11. So beautifully written and filled with such love, emotion, longing and hope. Your strength and insight are an inspiration and your words (though I have seen a glimpse) help me to better understand what my daughters and family have gone through and for some; continue to struggle with daily. Keep strong, dear Momma and know that many support you and others in their continuing journey of discovery all that is precious in this life.

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  12. You’ve spoken so well for so many who need to be heard even when they don’t have the time or energy to push the words out of their tightened chest. I’m mom to a young man who was diagnosed with high risk leukemia at 9 and the aggressive chemo and radiation treatment was hard on him. And hard on our whole family. You captured exactly the angst, the weight, the gravity and desperation of many moments during his treatment, and especially the night my fear of not being enough to meet his needs as I tried to crush pills and fill gel caps for a child who was more than challenged by taking pills and yet needed to ingest about 3,500 of them over the course of treatment. “I’m not a pharmacist,” my inner-Mom wailed as I feared I would mess up the dose. Some things got easier, thankfully, and connecting with other moms has helped tremendously. Isolation is so difficult because sometimes you don’t recognize it since you interact with kind and capable people throughout the week but that’s not always a connection that assures you that you’re a good and loving momma for a child who needs you and a family that isn’t following the standard pattern. Bless you for sharing.

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  13. Thirty-eight years ago my daughter was born with heart problems. Every word you said was how I felt. No one can really feel and know what it’s like unless they experience something like this. God pulled us through but it took a lot of prayers and trust in him. After all this years you when you read something like this it brings tears to your eyes. Remember that God is in charged and he knows what he is doing.

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    • Hi Peggy. Thank you for sharing. I often wonder if years from now this will be any easier emotionally. In my heart I don’t believe the pain will ever leave. What we experience and witness our babies going through, changes us so profoundly. The tears are always right on the edge of overflowing – even about the simpliest things. I see so much more beauty in this life. We are blessed parents. Thank you fo typing what I know is true – that God is in charge. I need that today.

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  14. I replaced the word mother by father and still felt like it applied to me. One year ago today my son was fighting for his life after being in cardiac arrest for 8 minutes due to complications during heart surgery. I have and still feel like this to this day. Very touching words. Today we had an amazing fund raiser in his honor. Thank you!

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  15. Beautifully written. Your sentiments are mine. My son was born with half a heart. We just got back from his sixth heart cath. We are 16 months in our wait for a heart transplant. Some days are harder than others and you got the nail on the head. Prayers to you and yours and thank you from a “stressed mom”.

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  16. Thank you for this beautiful post! My 11 y/o nephew is battling inoperable brain cancer where chemo and radiation are also not an option. I “see” my sister – thank you for knowing an
    d sharing – she saw this and it brought her great comfort. It also helped me know her better! Prayers for you and your family

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    • Hi Katie. Thank you for sharing with me. Please let your sister know I will pray for her and her son. I am glad you are able to be present for her and that my post helped you get a glimpse into her world. Whether she expresses it or not, she needs you. Stay close. Blessings to you.

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  17. Beautiful. I really liked the part about the scheduling therapy and dr appts…some days I feel like I spent the whole day talking to pharmacies or insurance companies …and I look back and think what a great day he had and I missed most of it because I was on the phone. But the wheels of most systems move slowly and the faster I can get through one step the faster he can receive that treatment. Thank you for writing and sharing this. God bless us all.

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    • It often times feels like a a full time job staying on top of the treatment and insurance side of things, doesn’t it? We coordinate so much, stress over so much because we know what needs to happen and the importance. I try and take care of those things when Luke naps or during my drive to work but sometimes – a lot of times lately – that isn’t working. But you know what? We ARE doing something for our babies. We are setting them up with the resources they need to be the most successful. We are taking time for them, just in a different way. That’s how I’ve started to try and look at it. Thank you for sharing and blessings to you and your family.

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  18. Thank you for this. Every word of this spoke to me. You understand completely how I feel. My son is waiting for a lover transplant. I would love nothing more than to get the call tonight. Having a sick baby is SO hard and you explained it so well. All of my love to you and your family!

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  19. Grateful for this tonight. My youngest son was diagnosed with a very rare spinal condition at 10mo in Oct and while there is hope and he’s doing well, there are also days I struggle to even talk I’m so exhausted by it all. Your post made me tune into the soft snoring I can hear over the monitor and cherish it.

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    • Hi Sandy! Exhaustion can be so all-consuming some days. I am glad your son is doing well and I do understand how the worry and concern remains even during those good times. So glad this post helped you and yes, cherish all those moments. Let yourself get lost in those more than in the worry. Blessings to you and your son.

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  20. I wish I could’ve read something like this about a year ago. My grandson was born with Heterotaxy syndrome, another rare disease that defies explanation. He was undergoing the 2nd of a 3-stage heart surgery. I watched every second of the clock tick by until I knew this precious boy was out of surgery. It felt like I was in an alternate universe watching people just going about their daily lives while I was praying for strength for my daughter and family while not letting people see me falling apart.

    I love what you wrote. Thanks from a grateful Grandma!

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  21. This is perfect. Although I just want to say this letter should go out to both moms and dads. My husband and I have 2 little daughters, both under the age of 2, and both are on feeding tubes and all kinds of meds sharing the same exact condition and the older one is also epileptic on top of it all. I love working so my husband is the stay at home and puts so much energy into these girls happiness and their medical. When I am at home I take care of their needs and he updates me on current meds and monthly deliveries and what happened at the last appointment. Everything in this article can easily be said for my husband and I see him break a lot and lose himself in it all because he really does put so much into their care. I find myself breaking inside as well in a more hidden way because I know we can’t both start spiraling so I try even harder to stay strong because I am thankful to have such a dedicated husband. I would say as far as the girls I handle 1/3 of the responsibility and he handles 2/3s. Just the amount that I take on is so draining, remembering which girl gets which meds daily care etc. so I know how hard it is on him which is why I try harder to hold myself together for our girls so he doesn’t always have to. People make the mistake of automatically thinking ‘momma’ when they think about the care of a child when that isn’t the world we live in anymore, it isn’t always mom and for those dads out their that CAN do what a mom does they seem to get pushed aside in stuff like this. So all you dads out their, know that this article may say mom but the intention of it was to connect with that daily special needs caretaker not just moms, ignore the title you deserve the recognition and support too!

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    • I agree with you Natasha. When I wrote this I was at a low point after a difficult week. It was not, nor is it ever, my intent to imply all caretakers are female. I’ve seen too much to know that is not the case. Thank you for sharing and recognizing the dads out there who contribute and sacrifice so much of themselves as well. Blessings and love to you and your family.

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    • I know this situation. I worked A LOT during chemo treatments and Dad was the main caretaker. Most weeks I would take him to chemo only to have to drop him off at home and go straight into work. I was working while my son was home, sick from chemo and in pain. I was devastated that I was unable to be there for everything but Dad was always such a great caretaker. Many nights when my son would wake in pain, Dad would get up to rub his aching limbs and hold him while they let me sleep because I had to get up for work the next day.

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  22. Thank you for helping me experience your pain and joy, so that I may be a more patient, understanding and supportive mother, grandma, aunt, sister and friend to those in my life who are going through this.

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  23. My boy Logan finally got a dx this week. While it may be low blow to a parent of a typical child. My heart is over joyed. I finally understand what’s wrong. I van not help him. It’s been an awful 3 years. The past few days I got the joy on being a mum. Not a nurse. Many parents cannot relate to the feeling, finally becoming a mummy, but other mum’s of SN kids can. Thank you all. Please take some of my joy and hope. I give it freely to you.

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  24. Thank you! It’s as if you put all of my thoughts into print. It’s so true that nobody else understands us like other mothers with special kids. It’s always kind of exciting to meet another mother who gets it. My daughter, Sarah, is 10 and has Dandy Walker syndrome, hydrocephalus, cp, 3 shunts…..the list goes on. This last year has been very hard. I see the doctors losing hope and her illnesses hitting her harder.

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  25. Thank you so much for posting this. My daughter has PFAPA and gets a 104+ degree fever every 28 days. Her immune system gets so low during an outbreak that I’m always afraid to take her any where in fear of her catching something. It’s so hard to watch your child suffer through sickness and there’s nothing you can do to help them. Prayers to your family.

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  26. thank you for writing this. It’s been a tough week and sometimes we just need to hear that someone gets it. That they see us and know what we feel. It’s lonely over here. Thank you for these kind words.

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  27. It was if you were writing my thoughts. This made me cry because this is how I feel everyday! My son is 10 and has Cystic Fibrosis. Every night I lay in bed and worry about every little thing regarding his health. Your words were inspirational. Thank you for sharing. God bless.

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  28. It feels like I am reading my own thoughts. Thank you for having the courage to put forth your words. My son, Blaise has Hypoplastic Left Heart Syndrome. We had a rough day of testing yesterday and your words bring me such comfort. He brings me more joy than I could ever know. Be blessed from Pennsylania. Keep writing.

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  29. Your words were such an inspiration to me. God bless you and your family and your sweet son. My little angel has Cystic Fibrosis and also feel like you. So much so that behind closed doors before I go to sleep I make myself literally sick thinking about all of the what ifs and have I done all that I can do to keep her here and healthy. If only I could take it away.

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    • I really appreciate your words we all have a different story but seem to walk the same path. My daughter is a triplet 15 years old with cystic fibrosis. Thank you ❤️

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  30. So true words.
    I needed to read this tonight, energy is super low, all emotions at the same time and no time to sit down and clear my head. My oldest daughter who is 5 has been battling cancer for some time now and every word you wrote could just as well had been my own.

    I read this, looked at her and filled myself with that extra spoon of energy to help me wrap up this day too.
    Thanks for sharing and all the best to you and your boy from Sweden. 💜

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    • I am so glad you were able to dig deep and fill yourself with all that energy – that LOVE. When we struggle, if we strip away all that is negative, all the hurt, the unknowns, the to-dos and what-ifs and just focus, I’m talking REALLY focus, on that baby before you, there is a strength that rises from our very core. That’s where the real living resides – in those precious moments. I am glad you could connect to what I wrote. You are doing a great job, Momma! Sending you blessings and strength. ❤

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  31. Thank you does not seem like enough but I am so grateful to you for opening your heart and sharing this! I needed to read this today. I hope to start writing on our blog again soon. It’s been a long time and I cant seem to find the words most days but this has inspired me. ~ a very tired mama of 2 with mitochondrial disease Conplex 1 and Xq28 chromosomal duplication

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    • Hi Mama! Thank YOU for sharing. I hope you will start to write again. I know it’s often hard to find the time and the words. They are there…I know 😉 Blessings to you and your littles ❤

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  32. I am completely humbled by your words, your clarity and the truth you just spoke. A good friend of mine who Son fights Cancer shared your post, My own Son has Mitochondrial Disease…you are speaking a message that needs to be heard….thank you, thank you for your words and for sharing them….they resonate completely. Blessings to you.

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    • Hi there! I am the humbled one…I wrote this late last night when the pain was flowing. Never did I imagine it would get the ‘shares’ and resonate so profoundly. My hope and soul desire in keeping this blog is that it brings hope to others. Lets others know they are not alone and that there is purpose in all of this pain. We can find it and we can grow from it. Thank you for sharing and God bless you and your son and your friend’s son. Press on dear ones, you are not alone. Never alone.

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