A MOTHER'S PAIN

04 March 2017

The irony of life has hit my family so hard and everything doesn't make sense anymore. It feels like only yesterday when I posted about giving birth to our Rainbow Baby Thomas and here I am writing about his imminent death.

His death.

Can you even get your head wrapped around that concept?  I can't.

I can't even begin to describe the pain I feel each time I look at his precious face. My heart breaks for every big smile he gives me because I know how much I will miss it when it's all gone, and when you think my heart can't take it anymore, it shatters even more when he gives his begging look when he's in pain.

Our good days usually start in a panic trying to keep his pain under control especially when he sleeps through the night.  Do I wake him knowing it will upset him and trigger his pain? Or do I wait until he wakes up when his pain is triggered? 

On a bad day, he screams awake frequently leaving him with little to no decent sleep.
How am I coping? How is my husband coping? We honestly don't know.

I wake up wishing it's all just a bad dream and then I look at Thomas and I know it's all real. I start to cry.

I go to bed scared and I beg for the night NOT to be our last.

And then a new day comes and I find him snuggled next to me, breathing, warm, sometimes half smiling in his sleep and I thank God for another day with him. Often times, the hysterical crying comes out instead of a sigh of relief. 

Right now as I write this post, our Thomas is still here with us and that's what really matters. Each day is embraced and each week is celebrated.

Watching my two sons together is a dream come true. Being a family of four has always been part of my day dreams. It's now my reality and it's trapped in this nightmare no family should be in. 

I am in desolation with no end on sight. My heart will forever ache for my Thomas and my soul will forever long for him. 




 
I am sad for my big boy William, he's only getting to know him.


Our Thomas has been diagnosed with Malignant Rhabdoid Tumour at 11 weeks old. He's now 13 weeks old (almost 14 weeks) and still fighting. 
We've been inundated with a lot of love and support all over the world and we thank you all for your prayers, positive vibes, thoughts and generosity. We are forever grateful. 

45 comments :

  1. <3 Big love to wee Thomas, and all of you beautiful people. xx

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  2. So much love and suffering...my heart is aching for you❤
    Yvonne

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  3. I cant imagine what you're going through Sheryl. I think of you and Thomas every day and send you lots of loving energy from the other side of the country. xxooxxoo

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  4. My heart breaks for you and your beautiful family xxx

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  5. Thomas is so privileged to have you as his parents.Your journey continues to touch all around you and beyond.Thank you for sharing xxx

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  6. I am so sorry for what you're going through. You have my prayers. It's never easy to lose someone, let alone your child.

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  7. You guys are amazing, Thomas is so lucky to have such a loving family

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  8. Dear Sheryl, I'm from Brazil and I've just read about your little son, Thomas... My heart is broken... my thoughts are with you! Thomas is a little angel that came to fill your family of love, hope, and other good things and to show to all of us that we might have problems in life, but we have to fight till the end. With love, Camilla (Brazil)

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  9. I don't know if hearing from strangers how heartbroken we are for you helps or hurts......I suffered through four miscarriages before finally having our rainbow baby last July. I have read your story multiple times, through ugly cries.

    Being a mom in the sense of day to day caring for my baby....opens a section of ones heart to depths of empathy and heartbreak you never knew before. I asked God why miracles of healing don't seem to happen anymore today as I cried. I asked for peace and comfort and strength for all of you. And I sent thanks for the strength and love you show in these moments.

    I picked up my girl (almost 8 months) and squeezed her tight and thanked God for this day I have with her...none of us truly know how many days we'll have. I'm sorry and sad that this has to be your story, I hope and pray that despite the horrid pain that you will still be able to see the beauty in the time you've had.

    I don't know if my words were "right" or not, but I just wanted to send love your way <3

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  10. Lord hear our prayers for this family and this beautiful baby - a baby you created and love - please grant them a miracle even if it's days without pain and suffering for Thomas - you are the ultimate healer Lord - please put your arms around this family

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  11. I love your boys, they are beautiful!!! So sorry. There will never be the right words to say to you. My heart melts and breaks at the same time. You're boys are examples of whats good in the world. What champions!!! Baby Thomas can find joy, even though his life has too much pain. Hope you too can find joy with your boys for now. So, so, sorry for you. 1 Peter 5:7 says Throw all your anxiety on (God) because he cares for you. I hope in time you can find comfort in him.
    Thank you for sharing with the us moments of your precious boys lives x x x

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  12. No words, no words at all. Too many tears running down my face and a massive lump in my throat.
    May god give you the strength and courage you all need on this journey. 💞

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  13. I am extremely sad to hear your baby's devasting diagnosis. Your baby is beautiful and my heart aches for you and your family. I have a 5 month old and his 10 year old brother adores him. I can't even imagine the pain you and your family must be going through. I will pray for you all.

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  14. Wow, he is so beautiful. I'm very sorry for both your losses. God must know what a strong woman you are to give you such trials and to make you a public blogger to share these heart wrenching stories that can only come from a mommy who shares and can be an example for other mommy's who aren't as strong as you. And the two special angels that will be with you in your life and your continued path takes you the places God needs you most. Holding the other moms who aren't as strong? I don't know, but God does. You are blessed in ways maybe not obvious, but you are blessed. I'll pray for you and daddy, and big brother and the little one you lost prior and for Rainbow Baby Thomas. God Bless You!

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  15. Lovely and beautiful family. I know that your entire family is going thru more pain and challenges than are imaginable. Hold onto one another and *know* that people you've never met care for you all and wish you all the best while you go through this journey. God bless and be with you all.

    Dave

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  16. As I type this with tears streaming down my face, I ask God to bless you and your family and give you peace, especially your beautiful baby Thomas. What an impossible, excruciating situation. You have such courage to share your story. Cherish every moment you have with that sweet angel. And you must be so proud of your boy William! Much love and many prayers to you and yours.

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  17. Our love to your beautiful family, from a little corner in Ridgefield, NJ. God bless.

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  18. Hoping God surprises you with a miracle and Thomas beats the prediction of the doctors!!!! I will pray till I hear he gave in! I am a believer in the power of Jesus to heal and also understand He could choose to take T for reasons best known but I will pray for the first miracle till God speaks otherwise. Sending you love and ��

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  19. I am very sorry to hear about your beautiful baby boy and what your family is going through right now. I will be thinking of you and praying for all the best for your family, never lose hope and faith for your baby's illness, just keep fighting. God bless you all.

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  20. Sending Love Peace and Comfort to you all and especially to baby Thomas <3

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  21. Much love and strength to you and your family and to your gorgeous boy. My littlest had the same diagnosis at 2 wks old. It's feels
    So surreal. How can a baby have cancer. My little boy got through 1
    Yr of chemo, multiple surgeries, transfusions and hospital
    Stays. It was a long road. I started a fb group for paediatric rhabdoid tumours Australia and there's a world wide group I can send you the link if you like? Much love and let
    Me know if I can help. X

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    1. Hi Brodie, can you please send me the link for the FB group? Thank you for your kind words :-)

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    2. Sorry forgot to hit notify for replies!! Just thought to check then! Www.facebook.com/groups/826960724106526/ or search paediatric rhabdoid tumours - Australia ( I did start it as a page and got annoyed with privacy and made it a group). But the page should also have the link as the last post.

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  22. I am so incredibly sorry that you are going through this immense pain. I just read your story and I just want to cry with/for you. I can't begin to imagine how tough each day is. I pray that you find strength & peace somehow. Thomas is a little fighter and also such a little cutie. I hope that he has many more days/weeks left for you to enjoy together. As a mum of a 14month old I just can't fathom the pain and just the glimpse you shared just brings me to tears. I can't imagine, and I'm just so sorry. Just know that you have alot people who are thinking and praying for you and your family xxxxx

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  23. I will pray for your son. Prayers are the most powerful tool human being was given by God. I will pray everyday since now for your child. I am pretty sure he will be fine. You MUST leave GOD to act, give your son to GOD and he is going to be fine. Trust God, asking him from deep inside your heart and HE will listen, ask Virgen Mary as a Mother ans SHE will listen. Dont just give up, GOD does Wonderfull Things, just PRAY

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  24. I am so sorry life has given you such a mountain . My heart aches for you and your family . Such a beautiful baby . Tears started as I read your story . I prayed to God to spare his precious child . For Christ Jesus to lay His healing hands on his child . I ask all children of God that reads this to pray and ask God to spare his child . Please , everyone join in . I also pray for strength and grace for you and your family . God bless all of you .

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  25. I can't begin to imagine what your beautiful family are going through. I'm so sorry Baby Thomas has to endure such pain. I will pray for you all for strength and peace. Thank you for sharing your story thru all the pain and heartache you are enduring. I can't stop crying reading your story and the beautiful responses. Although I don't know you, I will pray for a miracle. Place your faith in God for all things are possible thru Him. Please don't give up faith. Love and peace to you all.

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  26. You will always be on my prayers. Be brave, Thomas chose you are parents for a reason, don't ever give up on him. Thank you for writing this and being this amazing parent. Love <3

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  27. What a beautiful boy Thomas is. Sending you much love and positive energy. I pray you and your family continue to find the strength to face each day and Thomas is relieved from his pain. x

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  28. I pray for your family and for little Thomas. My hart and prayers go out for you. You Are such strong parents and what a brave boys you have!
    All my wishes, energy, Prayers go out to your family.������❤️

    XX Eva (Belgium)

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  29. My love, you are going through one of THE HARDEST things known to a mother. At 6 weeks old, my son was brought from his pediatrician to the local children's hospital and 12 days later diagnosed with a rare terminal genetic disorder. We spent the next two months juggling a newborn son on respiratory support and feeding tube with our 2.5 year old daughter. We brought her to visit as often as we could as well as kept trying to get him home. Near the end, we got him home & my daughter did just as your son had: held the baby's hand and gave him all the love a preschooler can. At 3.5 months old, his respiratory distress became too much to put him through any longer & we gave him all our love as we let him out of pain. Just a month later, we did get pregnant with our rainbow. I hope you will have your double rainbow when you are ready. Be strong, but allow yourself to feel the pain of it as well.

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  30. Thomas is absolutely perfect and my heart and soul hurts knowing what he is having to battle inside of him. He has the most kind beautiful bright eyes and his smile makes everything better. Thank you for sharing his story and your beautiful family photos. I have a 2 year old and a 7 week old and there are no words that can describe a mother's love for her children. There are no words that can express the pain you are going through. I am only feeling a tiny fraction of what you are feeling and it literally hurts my heart to think of how unfair this is to you, your husband, your oldest son, and Thomas. Nothing will make this okay but please know that Thomas has already touched so many lives and is loved by so many around the world.

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  31. Fight the good fight mama. You are not alone. So much love, faith and hope is coming your way from all over the world... and it doesn't show any signs of letting up. We won't stop. Stay strong. Keep your faith. Your family is beautiful. I cry for you and with you. Please stay strong! You are not alone.

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  32. http://iteamworldmarketing.blogspot.my/2017/02/is-stress-putting-you-at-risk-for-cancer.html?m=1

    Above is article abt cancer, maybe u cn read it

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  33. I just heard about this on your Instagram and am so heartly sorry you have to go through this. I cried for your family and beautiful son. I send prayers, love, hope, a miracle. Do not let this break you, believe in him, your son can beat this, believe it even if the world tells you otherwise. Think positive, this will not be the end, I refuse to believe it for you. God bless.

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  34. Oh hon, I am so, so sorry for your pain. You are a beautiful person. Most people have no idea what it feels like to experience the level of loss you are facing. Breathe and take each day one moment at a time if you need to.

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  35. Hi Sheryl, I am terribly sorry for the pain you are going through. I strongly believe that Thomas will make it through our love and prayers. Let us just keep our faith to HIM. And my prayer is that may the Almighty covers His Miraculous Hands to your family and to baby Thomas.

    Actually I know something that helped a lot of cancer patients. But I dont know if this can help baby Thomas. But pls do check immediately there website www.imuregeninfo.com All I know is they an incredible and one of a kind product which there content was awarded with Nobel Prize in Chemistry 2015.

    God bless baby Thomas and your family.

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  36. I read from some Med Journals that this is one serious type, I would like to suggest The Bob Beck Magentic Pulser, harmless and cannot feel anything but it does do some positive things in some patients IE: http://www.bobbeck.com/ViewDetails.aspx?PrimaryID=1682&CurrentPageIndex=0
    K2 Australia and SOTA in the US make these devices. usually about $400+ but its a lot cheaper than the Scalar Laser. Check the Link, its a therapy you would never had heard of I'm sure. https://www.youtube.com/watch?v=wdFDwei9k7Y

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  37. Prayers for your family and for your beautiful baby boy. Blessed be.

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  38. Hi Sheryl,

    God can heal Thomas, give your life and that of your family to Jesus. I'm sure he can do it.

    God bless you!

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  40. Never lose faith, please have faith in God, trust in Him. From Peru Thomas is in my prayers.

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  41. Keeping Thomas and family in prayers always. and I truly hope that God will grant us that miracle for Thomas.

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  42. "He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever." -Rev 21:4

    Always thinking and praying for you and your precious family!

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  43. Someone help me to help Thomas ... with the new biotechnology therapy ... because I have not tried to contact his mother by any means, but without success ... I want to help him free ... that God help us!

    Carlos Amorim (Brazil)

    E-mail:simplesclique@uol.com.br

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