Dear Tommy

July 31st, 2015

We haven’t been the same since you left us to fly to Jesus.

One year ago.

This day will always be covered in deep black on my calendar.  It may have been your very best day, the day you were born into heaven, but it took me to hell and back.  I didn’t think I could survive the agony, and sometimes I didn’t want to.

We spent today at Black Rock creek.  We weren’t at home with tragic old memories, we were out in one idyllic corner of God’s world making pleasant new memories.  You would have loved every minute of it.

From that traumatic instant when I realized you were really gone, our loving heavenly Father has taken me through the painful wrenching away of my grip on all transient hopes, all that He has not firmly promised us in His word.  Any giddiness that used to be part of me has turned sober.

I have lost the ability to be excited about possibilities that may or may not come to pass.  My constant awareness is that only He can see beyond the solid wall of the Now into the Future.  And that He may have incredible suffering stored up for my next moment.

Our Father used it, and is still using it, to wrench me away from attaching significance to my own emotions.  They jump up and down like yapping little puppy dogs and have no bearing on the reality of His plans for my life.

He used it to wrench me away from attaching significance to the vacillating opinions of others about whom I am.  He calls me to look into His face alone, to worship Him.  When You said, “Seek My face,” my heart said to You, “Your face, Lord, I will seek.”    

No longer am I a forward-looking person, always on to the next thing, expectant that He will give me good gifts.  Now I savor the gift of every joy He gives me Now, in this moment.

And this moment.

Sometimes it seems that I now insist that our family walk by sight and not by faith.  But He keeps on taking me past my NO signs to the exact places I said I would never go, the exact places He intends for me to go.  Ever the next lesson in, “It’s not all about me and how I feel.”  Ever the next need to trust Him.

How can I be sorry you are there rather than here?  I, more than any other person, know how painfully restricted you were inside your hurt mind and body, unable to enjoy what most of us take for granted.  But those things He created for us to enjoy are dim shadows of our Creator, and now you are enjoying Him!  Living and worshiping Him freely in a place that defies description.

I’m not sorry that He had mercy on you and took you home.  But I miss your no-holds-barred smile, your delighted giggle, and the sweetness of your innocent spirit.

There is so much more I want to say, but it will have to wait for the next time.  Maybe for the next time I stop to visit your grave.

In this past year, our Father has kindly given us small, brief glimpses of how He has already used something so horrendous as your death to bring about great good in the family you left behind.  And the faith to know that the reality is so much greater than what we are glimpsing.  When I am looking into His face, I am thankful that He chose us to be your family, in spite of the suffering.

Being your mother has been the most traumatic, the most stretching, the most horrifying, the most tender, the most excruciating, the most revealing, the most life-changing experience He has granted to me thus far.  It has shown me more about who our Father really is and what His grace looks like.  Maybe someday I will come to understand it all as you do now.

I love you,









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40 Responses to “Dear Tommy”

  1. Gloria says:

    Aww – what a precious picture and tribute – he was SOOOO LOVED! Praying for you all.

  2. Julie R. says:

    Thoughts and prayers for you and your family, Susanna!

  3. linda says:


  4. Stori says:

    Bless you sweet person, we are praying for you and your family. May the Lord continue to reveal himself in your suffering and joy.

  5. Patty says:

    Beautiful letter. I have been thinking about you and your sweet family today, and will lift you all up in prayer to our Father.

  6. Heatherk says:

    I have been thinking of your family. We will never forget Tommy. Though we never knew him in person, his life touched ours. Hugs and prayers Susanna and family.

  7. Becky says:

    Tommy’s bright eyes and brilliant smile lit up any room he inhabited. Now he can embrace that JOY in a way never possible for him here in his limited body. However, I know that your family gave him the most precious gift of LIFE in the time he was with you. He enjoyed the gift of unconditional LOVE in your home. He, for once, knew what it was to be part of a FAMILY.
    We miss him, for sure. We also love you unconditionally and have watched your struggles and victories…which are now serving to help us through a serious situation of our own. Tommy’s ministry continues. I’ll forever be glad for his coming into our lives.

  8. Mary says:

    Beautiful, touching, loving, heart wrenching tribute to Tommy. Thank you so much.

  9. Jenny Watson says:


  10. Bri says:

    I was thinking about y’all last night. You’re family is still in our prayers <3.

  11. ElizabethG says:

    Susanna, I just love you. I hurt for your hurt. I grieve with you. I also rejoice in Tommy’s current joy. I am not eloquent, but I pray for you and your family. My whole family loves yours. I am blessed to call you friend. I will be praying extra hard for you today.

  12. Tami C says:

    (((Love you, dear sister….)))

  13. Angie R says:

    Beautiful in a raw, real and painful way. I can’t imagine what you have gone thru. But I do believe in the end (or maybe even before) you will look back and say you were glad. Because without the fire you would have remained just a rock, but because of the fire, you are becoming a diamond. Susanna, the saddest part of your letter, and maybe you didn’t mean it like it sounded, was this, “Maybe someday I will come to understand it all as you do now.” Please understand, there is NO maybe. A Father is not something that is “maybe” it is for certain and forever. When Jesus said “it is finished” He meant it. He completed the task of making a way for us sinners to walk with a Holy God we can’t even begin to comprehend. When he says, ” I will never leave you or forsake you.” He means NEVER. You will never stop being a sinner until heaven, you will never be worthy of heaven or His love, BUT God will NEVER stop holding on to you. You are His adopted child. You know the trouble and helplessness of Tommy, but you, even as a weak human, would never “unadopt” him. How much more our amazing perfect God will NEVER unadopt us. Hugs my very dear friend that I have never met. :) But someday I will, I know, someday I will.

  14. Maureen says:

    No words, just prayers & gentle (((hugs))).

  15. Ann says:

    I’ve commented here a couple of times previously. I also have a child with Down syndrome. I cried when I learned of Tommy’s death wondering how any mother could live through the unthinkable. Then in October my oldest son died and my world came crashing down. It’s unfathomable that we should be asked to live on when our children are no longer here. I’m thinking about you all and praying for you today.

  16. Taylor-Tots Mom says:

    (((Hugs))) and much love and prayers. <3

  17. Laura says:

    Susanna, Praying for you, these extra tough days, and always. Laura

  18. Mary says:

    Dear Susanna,
    You, your family, and Tommy have been on my mind these days remembering all too well the sadness on the 1st anniversary of my oldest son’s death…16years ago. Having your eyes fixed on our Heavenly Father is a great witness to any momma struggling with not having their previous child to hold. Thank you for sharing your heart with us. I love that you are “moving forward”….God has so much more planned for your family! (Today, I had the joy of using a dish towel as a bib for a fabulous foster baby we are caring for…we purchased that dish towel as a fundraiser for Tommy’s adoption. That simple reminder today caused me to snuggle that little one a little extra today.) Blessings, Mary

  19. Louisa says:

    Our prayers continue to be with you and your sweet family!

  20. A.J. says:

    Praying for you. He is faithful – but oh, some days can be so hard. I am praying that He is holding you close to His heart.

  21. Cassandra says:

    Dear Susanna,

    I know you wanted more. More Tommy laughs, more Tommy cries, more Tommy smiles, more Tommy Time.

    I’m so very sorry.


  22. Cassandra says:

    To Ann (posted about 5 comments above),

    Thank you for sharing your story. It’s not been very long since your son died and the grief must be overwhelming. I imagine it will always be that way, like having a hundred pound rock in your pocket would never become easy, but I pray that today you find the burden just slightly easier to carry. Take care of yourself .


  23. Jeannie says:

    I love you, Susanna.

  24. Jaelle says:

    This brought tears to my eyes. Love you, my friend.

  25. Elizabeth S says:

    Loving thoughts with you.

  26. Blessed says:

    Oh, dear woman. God is using this in your life, and now in mine. I am going through a grieving process of a different kind, and finally one week ago decided to divorce–my feelings. The heart is deceitful above all things, and I realized that I have been miserable for 10 years because my heart tells me I should be, because of life circumstances that I thought would be resolved so long ago and now I think will be just the way things are, forever. I have known I am missing out on Joy, and that God has commanded us to be joyful even in suffering, but I have been at a complete loss for how to actually do that. How do I stop feeling these things, that are based upon real events, real hurts, real actions? It was like saying if I didn’t feel the pain of the wounds that they had never been inflicted–and that somehow means they didn’t happen or don’t matter. Really, I’m the only one making myself miserable.

    So finally I’m so sick of feeling this way that I decided to do something–and since I can’t control the circumstances and people in my life, and can only control my own feelings and responses, that’s what I’m doing. I’m divorcing my feelings–and it was funny how much that decision has allowed me to better love the people in my life. At least this first week! I’m still trying to figure out what that looks like, and how living fully, in complete liberty in Christ can be joyful even when circumstances and feelings are telling me I should be upset much of the time. So your words really hit me: “Our Father used it, and is still using it, to wrench me away from attaching significance to my own emotions. They jump up and down like yapping little puppy dogs and have no bearing on the reality of His plans for my life.” Yes. That is exactly where I am now too, and it means so much to me to have someone else be in a similar learning place–even though our stories are SO different and in no way am I comparing my life and struggles and sorrows to yours, I felt just a tinier bit less alone when I read that.

    I’m still praying for you and your family. I’m so sorry for your grief, and am so glad you have kept your heart soft to God so that He can grow you through it. Thank you so much for writing, and being so real. Your real-ness is an offering to the Lord, poured out here for His glory and our benefit—you have such a ministry of word and deed, Susanna. Blessings on you this day.

  27. Blessed says:

    p.s. If you have further words of advice on how you are holding up feelings to the Light, or “taking every thought captive,” or any Scripture that helps you in this area of not being at the mercy of your feelings–I would love to hear it.

  28. Susanna, thank you so much for your honestly in this post. It’s so good to hear someone say how they are really doing, instead of how they wish they were doing, or are trying to be. My stress right now, although really high, is tiny compared to your last year, and I needed to hear that my inability to place hope in any future other than heaven, is normal. When I read those words from the psalm, I cried. First time I’ve cried in weeks, and I do need it so badly. May our Lord apply His salve to your heart, friend.

  29. Susanna says:

    All of you,

    Thank you for reaching out and expressing your loving thoughts to me. Every one of you has been used by God to minister comfort to me, and I am so very thankful for each of you.

    Some of you I’m replying to via email, but Blessed, since you asked a question here, I’ll reply to it here. This will be really long, and I apologize ahead of time for the lack of sufficient editing and clarity.

    Not knowing your circumstances, I have no idea whether the things that have helped me will help you, but I’ll jot them down here as they come to mind, just in case they could be useful to you as well.

    It should be reiterated at the outset that I still have a long way to go before I’m in a solid place, and I didn’t come to where I am so far by some tremendous self-generated insight and force of self-discipline, but by the ax of discipline wielded by the hand of God in my life. A friend who went through a similar circumstance years ago told me she prays now that God would be gentle with her. Maybe I will be able to do this someday, but I don’t feel free to pray this for myself, because how do I know, as God knows, exactly what it is I need for Him to make me like Jesus? So I’ll go on praying as I did before that He will do to me and with me whatever He sees fit, and asking Him to please have mercy on our children.

    All that to say that if God hadn’t chosen such drastic circumstances to sever my ties to my own emotions, I doubt I would be where I am. I don’t have to battle my own emotions, for instance, about the possibility that we may be building on and bringing J into our family, because I don’t get excited any more about things that may or may not happen, as I said in the post above. I wrote unable, because I am literally unable to get excited anymore about future possibilities that may never come to pass. I will be excited about breaking ground for the addition if we get to the day that we actually are breaking ground for the addition, but I will only be excited that we are breaking ground, and nothing more. If we break ground to build, that is not God’s promise to us that it will all come to pass, that J will come into our family, or that it won’t all burn to the ground or most of our family be killed in a van wreck. I don’t expect the worst to happen, like a Puddleglum, but I do know that God COULD have more of the worst for us, and He would still be the same good God who is worthy of our worship, just as He is to the Christians who right now are being butchered by ISIS. I do pray for all my friends and family that God would be gentle with them, but I know that may not be what He has stored up for them. He is still GOOD.

    For months after Tommy died, I worked on a Truth Script. Having a skilled, experienced, and theologically solid counselor help me work through all the turmoil revealed that I was functionally believing many lies without knowing it. Before he died, perhaps partly due to the apologetic approach I have taken to blogging (trying to see from the potential perspective of various readers, thinking through their potential objections, and answering them before they are brought up), and during the worst of the winter previous to Tommy’s death, I had fallen into a habit of evaluating our family through the eyes of our worst critics. Through those dark months, I had come to be convinced that the enemies’ judgment of us was correct. I was constantly doing negative self-talk.

    After Tommy died, as my erroneous thinking was revealed, both the lies I was rehearsing in my mind and the truth that countered the lies went into my Truth Script. Sometimes I had to borrow the clear thinking of others to come up with the truths that corresponded to the lies, because I was so unable to determine what the truth actually was. It was HARD. Oftentimes I felt like Susan in “Miracle on 34th Street,” rolling her eyes and murmuring, “I believe, I believe, it’s silly, but I believe.” Even after I would work through it, at any given moment thoughts would come to me that revealed that I was back in my default mode of thinking, and I’d have to fight and fight back with the truth. As the months went on, I was so exhausted by unending waves of grief, trauma, self-blame, regret, and other powerful negative emotions that sometimes I didn’t even feel like fighting back with the truth; I just wanted the whole battle to go away so I could rest and feel normal again.

    The mental discipline of having to work on that Truth Script was enormously valuable for me during the long period of time that everything within me was in flux and my emotions were screaming lies. “The enemies are right and all the nice people are just saying things to try to make me feel better, but in their heart of hearts, they probably really agree with the critics.” The moments of clarity and light were few and far between. When they came, I was relieved and jumped to conclusions too quickly that now I was in a good place, finally.

    At one point, it suddenly came to me that I was asking and asking God to show me who He was, and He was revealing it to me over and over again in the words of HIS PEOPLE who were speaking His truth and grace to me over and over again, BUT I DIDN’T RECOGNIZE IT BECAUSE I WAS ARGUING WITH THEM MENTALLY AND BELIEVING THE HATEFUL LIES AND ACCUSATIONS THAT WERE COMING STRAIGHT FROM THE ENEMY. I was standing with the enemy against the truth of God?? How scary!! When He revealed that to me, I saw how dangerous a position I was in and took it very seriously!!

    I was counseled and also learned by hard experience to be extremely cautious about what I was taking in. What was I reading, listening to, watching? I was very, very fragile and vulnerable to perspectives that were not based on the truth. What I should NOT do was just as vital as what I should do. I listened to tons of Scripture and also the Pilgrim’s Progress and read a long list of books during this time, some of which were very helpful. I purposefully didn’t give a fleeting moment of time to the voice of the enemy, and if some got through to me anyway, I got angry with the enemy and spoke the truth back to him, out LOUD, in no uncertain terms. I vented a lot of strong language at those times. I told him that he was already whipped and what he stank like and where he belonged and told him he may as well leave me alone and go slinking back there or go bother some herd of pigs with his reeking lies, because he had no hold on me, his real fight was with God, and He had already claimed me with the blood of His Son. And so on. And then I would sing praise songs to God really loud, out loud. Getting really mad at the enemy was excellent advice from my counselor and I was so glad when I got to the point when I could finally take it.

    I don’t yet trust myself to be able to stand up and fight back publicly against the lies with the truth. I am still too vulnerable to the false perspectives of our culture and am still too easily mentally and emotionally bullied by the enemy’s spokespersons, and sucked into the downward cycle of negative thinking. I’m just not going there, not even pushing myself to the limits to find out what I can handle.

    Joe has been a strong fortress during all this emotional battle, never once losing the clear understanding of what God says vs. what the enemy is trying with all his might to make me believe, EVEN WHEN THE ENEMY’S PERSPECTIVE HAS COME FROM WITHIN THE CHURCH. His strength, friendship and prayer for me has been vital, as has the faithfulness of so many friends God sent to me. I made myself open up to the women in our church, not having previously risked being that open with them (“Now you know what I’m talking about when I say I’m a mess…”), and it has been one more transformative, healing factor.

    I’ve had so much sound, excellent counsel from those who love the Lord, read so many insightful books, especially about the many meanings of suffering by those who have suffered, listened to so much of the Word (and that is ongoing), had so much support from those who love me, and know my limits and am strict about observing them.

    This is all I can think of right now, and I must run along, but please feel free to keep the conversation ongoing if you like, and if anyone else has made it to the end of this epistle, I hope you also feel free to join the conversation. We will all benefit.


  30. Susanna says:

    One more thought, but so vital a help to me that it should be included here.

    During these months, I have worked through what my responses to the Lord should have been during my time of extreme testing while Tommy was with us. This is not for purposes of wallowing in regrets, but for strengthening and preparing me for more times of testing He could allow in the future.

    I should have responded to Him thus.

    I did not choose these circumstances for our family.

    [Some may argue that we did, but they are wrong. We and those close to our family knew that we could handle another child like Katie and the best information that we could obtain told us that Tommy was in a far better position than Katie had been when we brought her home.]

    So, to repeat.

    I did not choose these circumstances for our family.

    That means You did.

    You chose these circumstances for our family.

    You are good and will use these circumstances to accomplish Your good purposes in every one of us.

    Therefore, I choose to rest in what You are doing in our family.

  31. Anon says:

    Pardon me for being anonymous, but even before Tommy you came across sometimes as having a guilt and/or apologetic. I found myself often wondering why you came across that you were beating yourself up so hard.

    Let go Suzanna, let go. You try harder than most people to do what’s right, be a good mother to many and so on IMO. Just turn your thoughts to mute, good or bad and just quiet your spirit. You come across as restless in your spirit like you are always wrestling with God or things even in your quiet moments. Be still and feel. Just surrender yourself and feel Him. You are not the worst person He has created or encountered, far from it. You are one of his kindest creations, IMO much before Tommy came into your life. I have never met you in person but I feel confident in saying so because I have been among your followers for so long.

    My advice FWIW, Just feel Him Susanna, like a little child surrenders, just feel him. Don’t bring songs, books, music even scripture. Just feel him. It may sound like stupid advice and perhaps it is. But for me, even Scripture is noise sometimes. I just let go and quiet my thoughts, good and bad and just think of Him, only Him and I feel so at peace. I wish that peace for you. The one that passeth all understanding. God bless you.

  32. Jeannie says:

    Blessed, may I recommend “Loving God with All Your Mind” by Elizabeth George and “Abiding in Christ” by Andrew Murray? Both have been very helpful to me.

  33. Melissa says:

    “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.” –2 Cor 1:3-5

    God bless you as you continue to heal and to trust.

  34. Sarah G says:


    Once again, both in your post and in your “epistle” as you call it :) you wrote so many things I needed to hear today. Especially the part about not trusting the emotions that will jump up and down (loving the yappy dog image…) and not being able to see around the corner, but trusting that, whatever comes, God is GOOD. I think I need to hammer out a truth script for myself as well. Our application is in and we’re still waiting for our homestudy to begin. God has recently convicted me that I’ve been caught up in a lot of Martha preparations, but that I need to put more time into being Mary, sitting at his feet in quiet trust.

    Praying for you each time the Spirit brings you to my mind <3

  35. sabrina says:

    Oh, my heart. That picture of you hugging Tommy is beautiful. Tears. Hugs. Prayers. Love you, friend.

  36. Esther Paris says:

    Beautiful photo! I look forward to meeting you all soon.

  37. Joanne says:

    My heart is with you, in a special way now. Because I am now in the league of those who have loved someone with special needs, and then lost them.

    For almost a year and a half, I was an aide in a school for kids with special needs. I worked with, and lost my heart to a young man with multiple disabilities. He passed on the second of August.

    There is something about those kids who need a little extra help. A certain rare and fragile beauty, a personality that is so incredibly unique and precious, and an incomparable toughness and strength as they fight for the littlest things that we take so much for granted. No matter how difficult it can be to care for these people (and yes, it can be so, so difficult!) it is always worth it.

    They often leave us too soon, but they leave us forever changed, and with the sweetest of memories, and smiles that shine through our tears.

    Here’s to the beautiful boys we have loved.

  38. Cindy W says:

    Susanna, you have been in my thoughts and prayers as the 31st came and went. May you continue to rest in God’s great arms of strength,mercy,and grace for each step of the path He has for you.

  39. Susanna says:

    Anon (I think I recognize you from your former comments :) ), I was cleaning out my desk and came across a scribbled note of a quote from one of our pastor’s sermons. “There is an ongoing spiritual conflict for the allegiance of our hearts.” It struck me then, and strikes me again now. I can and do rest in His presence now, but not when the pitched battle for my soul was so fierce that from my human perspective, I was not at all sure I was going to spiritually survive it. How could I rest in a God I didn’t know for sure was my God? That’s where I was during the darkest stretch of time. Knowing that He is love and knowing that He loves me are two different things.

    I learned that my underlying default understanding of God, the understanding I was living from without knowing it, was that His acceptance of me hinged on how pleasing I could be to Him. I didn’t know it, but I had no idea what grace truly is. After Tommy died, it felt to me like He was angry with me, and to me, that meant I was not His child, as I don’t believe He is angry with His own children. I needed to know beyond all shadow of doubt WHAT THE TRUTH WAS about how God saw me. The truth I KNOW now, and can REST IN now, has been hard fought and hard won. In the furnace of suffering, He purified what I formerly considered to be my solid understanding of and relationship with my heavenly Father. Now I know from experience, among other truths, that my life is hidden with Christ in God, and that He will not cast me out. No matter what terrible suffering He allows into my life from now until He takes me home, that will not change.

    There’s a hymn I used to overlook that now is so rich for me that I cannot yet sing it all the way through aloud.

    “My hope is built on nothing less than Jesus’ blood and righteousness;
    I dare not trust the sweetest frame, but wholly lean on Jesus’ Name.

    When darkness veils His lovely face, I rest on His unchanging grace;
    In every high and stormy gale my anchor holds within the veil.

    His oath, His covenant, His blood support me in the ‘whelming flood;
    When all around my soul gives way, He then is all my Hope and Stay.

    On Christ, the solid Rock, I stand; all other ground is sinking sand.”

  40. Shelly says:

    I’ve been thinking about you a lot this past month knowing the anniversary of Tommy’s home going was coming up soon. I grew up close to where you live, so when I first read the article, it really touched me. I admit at first I wondered about whether it was a wise decision to bring another child with special needs into your home, but then I went back and followed your blog, and I saw the love your family had for these special children. I think we’d always like to think that we make these decisions for anything affecting our life, but yet as a believer, I know that God has every single thing under His control, no matter how small. So, of course, His hand was in this very big decision for Tommy to join your family. You did choose this for your family when you chose to follow God’s lead for your life.
    I dont know why this played out as it did, but in my own little mind I’d like to think that God wanted Tommy to know some earthly love and caring before he went home, He wanted him to know what it was like to be a family. I know these are only earthly thoughts and those kinds of thoughts are only for my own purpose, but eventually I have to admit I have no idea why these things happen and that totally trusting God is the only way to live.
    I am so sorry you’ve had to live through something like this, but I want you to know there are people all around who you have never met that were touched by Tommys story and continue to hold you up.

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