On September 11, 2001 the world changed forever. Yesterday, September 11, 2012, my family’s world changed forever.
It was a beautiful, clear morning in Houston, not unlike what New Yorkers described eleven years ago before ugly black smoke filled the blue sky. I loaded Grayson in the car and headed to my parents’ house to pick up Hannah, my sister in law who had graciously agreed to go with us to G’s doctors appointment, which I had jokingly promised her would be an “adventure.”
We were seeing Grayson’s Mitochondrial Disease specialist, who you probably remember has been on maternity leave for several months. We had to discuss with her the results of the MRI, spinal tap and genetic testing. However, I have had copies of all of these and had even discussed the results with G’s neurologist. When Ryan asked if he should take off work and come with us to the appointment, I said no. I figured she would say basically the same things we’d heard before, but maybe with a little more clarity.
We talked to a med student, Grayson fussed, we changed his diaper- all “normal” things we do routinely at doctors appointments. Then the doctor came in, and the plane slammed into our building, although the doctor ended life as we knew it with kindness and gentleness. The news was devastating and shocking: Grayson has Leigh’s Disease.
Leigh’s Disease is a rare form of Mitochondrial Disease that is fatal. We do not know how long he will live, but Grayson will most likely not survive childhood.
In a second, I went from Special Needs Mom to Mom of Child with Terminal Illness. How am I supposed to process this? What I am supposed to do? A lot of real life people know the news already and are asking if we are ok and what they can do. No, we are not ok, and I have no idea what they can do. It’s just where I am right now.
Please know if you’ve called, emailed or texted and I haven’t responded it’s not because I don’t appreciate it or don’t want to talk to you- I’m just exhausted and emotionally overwhelmed right now. Bear with me- and know I am so grateful for your prayers and support.
I do know that we are more determined than ever to give Grayson the happiest life we can- however long or short it is. And this little guy certainly doesn’t know anything has changed. We just love him so, so much and will celebrate his life every day (and big time next Saturday when he turns TWO!).
Photos by Rebecca Kline Photography
A New Version of Me 
Elizabeth, I really don't have any words, I am sure you are devestated. I'm sorry doesn't seem nearly enough. God has blessed you with Grayson. Live everyday to its fullest. Thank you for sharing, because of you I hugged my kids closer and will continue to live life to the fullest.
Oh no. I'm so sorry. It's a parents' worst nightmare.Not really much to do other than go on loving him and making as many memories as you can. Hang in there. You're doing perfect.
I have been thinking about you non-stop and am here and ready to help/cook/listen/do when you need any of the above. You have lived each day to the fullest and I know that you will continue to do so. Love to you all-
Oh Elizabeth. There are no adequate words. My heart dropped. I can only imagine what you are experiencing. Sending you love and prayers. When you've had time to process this, please let us all know what else we can do for you.
I am so sorry to hear the news. I know you have family there for you, but please know that you all are in my prayers. I will check in on you after awhile, just know I am here for you and thinking of you. Grayson is so blessed to have you as his mommy, and you are bringing him so much joy! He is precious in God's eyes.
I can't breathe. I can't even imagine your world right now. I can't stomach what must be going on in your head, in your heart… Know that an internet "stranger" is sobbing for you right now & that my heart is breaking right along side your family's right now.I don't want to tell you to live life to its fullest. I don't want to tell you make the most of your time with G. I want to tell you to cry & scream and ask "why me?" because that's what any mother would do, who has just been told she will lose her child. It's what I would do, anyway.This is devastating & so fucking unfair.
Oh Elizabeth. I can hardly breathe. I don't know what to say. Truly, there are no words. Please know that I am keeping you and dear, sweet Grayson in my thoughts. I would write more except I can't see through the tears. I am so so very sorry. Abiding with you during this impossible time.
Add me to the list of sobbing internet strangers. I have no words but lots of tears, hugs, and prayers.
Elizabeth,I am absolutely heart broken for you. I don't even know you and I started crying reading this. I know this is said a lot in the blog world, but know that I really will keep you and your family in my prayers.
I don't know you, sweet Grayson or even your story. I do know that life has dealt you an impossible situation based on today's post. I cannot fathom what you are surely going through and my heart absolutely breaks for you. My heart is heavy tonight and please know that you and your family will be in my prayers tonight and every morning and night here forward.
I am so, so sorry. My heart breaks and I am devastated for you. I have no words, just sending you love and support.
I found my way here through one of your reader's blogs. I'm so very sorry for the news you've been given. Sending you strength during this difficult time.
I am so sorry Elizabeth. I can't even begin to imagine what you are going through but my heart is breaking for you, Ryan and your entire family. I have never met Grayson but I know that he brings a sparkle to your eye every day. Let me know if you need anything and I will continue to pray for you all. I know its hard to hear, especially right now, but God has a reason for this and we just have to trust him.
I just found your blog, but as a mother of 2 year old, my heart breaks for you. I pray that your family can find strength and peace!
Elizabeth, my heart aches for you and your family. I wish I could just sit with you and hold your hand. I will be keeping Grayson close in my heart. XOXO
Popping in from a message I saw on Twitter. I am so sorry for what you are going through. I can only imagine how devastating this is for you. I do hope G-d's reason for laying this weight on your family becomes clear to you soon and you are able to find peace as a family so that you can have some comfort. It is clear that Grayson is a happy and very well-loved little boy with a fierce mama. ❤
There are no words… I am here when you need me….
Oh Elizabeth, my heart breaks for you and your family. Grayson, you, your husband and family remain on my heart and in my prayers. May our heavenly Father bless you with strength and courage you never knew you had. May peace and love surround and sustain you.
I am reading this and weeping. Please know I am here and abiding with you. Sending love and light to you, your son, your husband and your friends and family. If you need anything I am here, even if it's just silence and a pebble to know I am standing by you. (((.)))
We will never meet in person but know that there are people all over sending their support, love and prayers for Grayson. From a 'lurker' who has read your blog for a awhile.
Elizabeth – I'm Erin's friend from Dallas. We've met at least a couple of times. Erin has always talked so lovingly about you and Grayson. I've been reading your blog for a few months now and have always found you and Grayson so inspiring to me. You seem to handle everything that is thrown at you with such grace. I'm in awe of your resiliency! I think my heart missed a couple of beats as I read your post tonight. I actually had to re-read it a couple of times to make sure I read it right. All my good thoughts are being sent your way. Grayson is so lucky to have you as his mommy. Don't ever forget that!
We met briefly at the mito social in Katy earlier this year. I'm so sorry to hear about G's diagnosis. I believe in God and trust Him infinitely; however, it sure is hard to understand sometimes why good parents and families are dealt such devastating situations. It's not fair. All I can do is pray for you and your family, and hope that you find the strength to keep going and keep fighting. He's such a blessing!
I am so sorry for this devastating news. holding your family in my heart.
I am shattered. Grayson is so very loved. He stole a piece of my heart back when I first met you. I don't understand and I have no platitudes to offer, only tears to share. I wish I were there now, to hug you, and hold my sweet G Force. Larkin asked for him just today, and kissed my monitor when he saw these photos. I love you all.
I cry for you..I send hugs and support..prayers too. May you let us support you..call out..walk with family and friends. HUGS!!
Oh my word. I don't know if I'm going to throw up or just start bawling my eyes out. But my heart just sunk all the way down to my toes. I just have no words. I'm so very sorry. I can't even imagine. But I am definitely sending love and prayers your way! Oh, sweet sweet Grayson! I just can't take it in. He is such a joy. I just can't…. Just… *hugs*
I'm so very sorry for you and your family, especially little Grayson .You are in my prayers and in the deepest part of my heart.I can only imagine the hopelessness you feel.i will be praying for a miracle
I am here via Jjraffe at Too Many Fish Too Fry. I am so sorry that you learned this news about your precious son yesterday. It is shocking and devastating to be told that your child has a fatal disease. I was told that during my pregnancy with my second child, who died about ten minutes after she was born. I know that isn't the same as getting such a prognosis for a two year old. But I do know how heartbreaking it is to have to try to process and live with the idea that your child may not live as long as you hoped, dreamed and imagined they would.Of course you are not okay and you don't have to tell people what they can do. It always amazed me when people asked me that during our journey with our daughter Molly. I knew they had good intentions, but I was usually at a loss of what to say. I really appreciated the people in our life who "just did" things for us, without asking. They didn't hover or over do it, but they had a knack for checking in and showing up at just the right time with a phone call, a visit, dinner or even just my favorite kind of milkshake.Sending thoughts and prayers your way. You can and will get through this. One day, one hour, one step at a time. I love your attitude about trying to give your Grayson the happiest life you can, no matter how long or short it is.Hang in there. You can do this.
I am so sorry for this terrible news. he is a precious boy. sending love and peace from mississippi.
Oh Elizabeth, my heart is breaking for you and your family. Grayson is such a beautiful, vibrant little boy and his diagnosis seems unreal. You are in my thoughts and prayers.
I'm also here from Too Many Fish to Fry. I can't imagine getting that news and I don't know how you begin to process it. I have no words but can't just click away after reading this post. You and your family are in my thoughts and will continue to be. Wishing you peace.
My heart aches for Grayson…for you. I so wish you had not received this devestating news–it's just so unfair. Sending lots of love and strength to you and your family.
Also here from jjiraffe's blog.I am so sorry hon, I cannot begin to imagine how it is to receive this kind of news and deal with this situation. He looks like such a wee charmer . . . no-one should have to handle this.Kathy – love that reply above
Here from Jjiraffe's. My heart goes out to you, your family and your precious son. What devastating news. Sending you love and light to get through this difficult time.
I'm also here from jjiraffe's blog…I'm praying for you and your family to have the strength to endure whatever you will have to face in the coming days, months and years. More important, I'm praying for a miracle for your little guy.
I am yet another stranger (found your blog through a friend's blog) that is reading this through tears. My heart goes out to you and your precious family. I willpray for you all to have strength and comfort through this really difficult times.
This post completely broke my heart. I am sitting here crying for you, for Grayson, for your family. I feel so helpless and wish there was something more to do or say than "sorry". You're on my mind constantly, and every time I think of Grayson's beautiful little face, I offer up a prayer for you. ((hugs))
We are thinking and praying for you guys. There are just no words.
I am thinking about and praying for you and your sweet boy! I pray for strength to make it through, many joy-filled times with your son, and peace. Lots of love and a great big hug sent your way!!!
I am just so incredibly heartbroken for you and your family. I will be thinking of you all and praying for you. Sending hugs and strength to you. xoxox
Also here from jjiraffe. There are no words to describe how much my heart broke for you when I read this. How completely devastating, and the analogy to 9/11 is apt. I'll be thinking of you and your family.
I'm here from jjiraffe as well (though I've popped by before through PAIL). I am so incredibly sorry for your family and for your sweet little boy. Thoughts and prayers with you as you come to terms with this unthinkable news.
Holding you in my heart. I am so sorry, Elizabeth.
Oh Elizabeth – I read this in the middle of the night last night and my heart just broke for you and your family, and especially for Grayson. I cannot imagine the pain and confusion and fear you are facing right now, but I do know that you are an incredibly strong person and ESPECIALLY an incredibly strong Mommy and that every moment of Grayson's life will be lived to the fullest b/c of the wonderful parents he has. Holding you in my thoughts and prayers today.
My heart was literally just ripped from my chest reading this. I wanted so badly for this to be different and I want to change it so much. Your family will remain in my prayers every single night. I am so sorry.
I am so sorry to hear of this heartbreaking news. There are no words to describe how incredibly sorry I am and I know I can't even begin to imagine how you are feeling right now. I will be thinking of you and your family.
May God be with you and heal your pain and hurt! May he wrap his arms around Grayson and continue to give him a wonderful and fulfilled life! Your family will be in my prayers!
I'm stopping by from Josey's MyCheapVersionofTherapy. I know a lot of people don't believe in miracles but I do. I'll be praying fervently for little Grayson and for you and your family. Words can't express how much your story has really gripped my heart. I send you my love and prayers and support during these times.
Lifting you up in prayer. I can not imagine the pain or struggle. This is/would be my worst nightmare. Praying that know matter what that you stand firm in the Faith of God. That is of course by his grace that you can do so. Again, lifting your son and your family upt in prayer.
No words my friend! You will NOT walk alone. There is no illness or delays or meds or tubes or seizures in heaven – dwell on these things only what is good, pure, right, noble, lovely, true, admirable, excellent and praise worthy. Bridget
I have been praying for you for quite a while now although I did not know you in any way. I have been praying for our grandson and all the other children in the world who have any sort of issue that there is no diagnosis or cure for. You see we have a 6 month old grandson who was just finally diagnosed with a devastating illness and we were told that his life span will be short. I do believe that God is in control but I do not have to like the things that are going on. Our grandson spent the first 105 days in the NICU at Cleveland Clinic an is now in a rehab hospital. His parents cannot take him home until they can buy a house and get all the necessary updates that will be needed just for his care. I cherish every moment we get to spend with him and love him with every fiber of our beings. So you go right ahead and cry, scream, ignore messages, whatever you need to do to is fine. Just love Greyson even more and cherish each smile, kiss, hug, and even tears for they are worth everything. Do not dwell on negative things or let negative people bother you. You have prayers and love for all your family.
So sorry to hear this. Hugs to you.
Another visitor from Jjiraffe and Esperanza.I'm so sorry that this is happening to you. What you say about celebrating his life every day … is so, so important. If only we all remembered to do this. I lost a friend this past weekend, a mother of two children (ages 3 and 5). She was very young. It's all wrong, in so many ways. Those children should not be motherless. But one thing it's reminded me to do is to celebrate and love my children with all of my being every day, because I never know when I might lose them, or they me.To give him the happiest life you can … that is all a child can ask for. And all you can ask of yourself.Be kind to yourself, know that he loves you with all of his small being, and that every moment is a precious gift. Because the miracle still is.I can't even imagine how hard this is … but I am abiding with you, and sending you love and light.
I am also hoping for a miracle for your beautiful son. It sounds like he has the best mama and will have the happiest life regardless of how long or short it is. Your family is in my prayers!
I am so sorry. I have been reading for awhile, but not sure I've commented. You and your sweet family are in my prayers.
We received an email last night directing us to your blog post. As parents of a 2 year old, it was heartbreaking to read. We will be praying for your family, and we believe that our God will be somehow glorified through Grayson's story.“My God will supply every need of yours according to his riches in glory in Christ Jesus” (Philippians 4:19)
I am so incredibly sorry to hear this news. My heart and thoughts are with you and your family.
Oh, Elizabeth, I am so sorry to hear this. I am crying for you and Grayson right now. I am devastated for all of you.I am thinking of you and will continue to do so – with lots of love and prayers.I do want to say that I hope that you are being kind to yourself. Many times, when people get this type of news, they think to themselves that they wish they'd been more patient with their kids prior to the news, more loving, more calm, more supportive. YOU SHOULD NOT THINK ANY OF THOSE THINGS. You have been the best mother possible and you will continue to be. Nothing in regards to the love and appreciation you have for your son is changing – because you have always cherished him for the gift that he is. You have never taken him for granted. Grayson's world will continue to feel the "same as always" because you've been such a tremendous mother to him his entire life – not just when the going gets tough. He has known nothing but love and total warmth from you and your husband. You have always been an example to me of what a mother should be.Much love your way, my friend.
Oh Elizabeth, I'm so very sorry. I don't know what to say other than please know that you're in my thoughts and prayers. You and all your family. And sweet dear Grayson.
I'm here via JJiraffe's post, and I am so sorry for this awful news. Sending you hugs and strength from NC.
Here via Josey… I am so, so sorry. There are no words for situations like this. Lifting up many prayers for you and your family.
I have heard from so many bloggers who want to help support you. One suggestion was this: http://supportplanner.caringbridge.org/ It helps you schedule friends and family who want to help you with chores, meals, etc. Caring Bridge is a great organization. (((hugs)))
Here via PAIL – I am so, so very sorry that you got this news. I wish there were words that were adequate in situations like this, but there just aren't. Please know that you and your family are in my prayers.
Here through jjiraffe.wordpress.comI am crying for you, praying for your son. Not much I can say… just send you lots of hugs.
So sorry to hear this about your son. He is beautiful and a perfect gift from God. I'm so sorry you are having to go through all of this. Prayers and thoughts are heading your way. Thinking of you.
I'm visiting from PAIL through thoughtprovokingmoments.wordpress.comI won't try to say anything that anyone hasn't already…. but know this: my heart aches for you and your family. I can't imagine preparing to lose my child when I struggle to just have one. Your family will be in my thoughts and prayers.
Oh Elizabeth, count me with the screamers. I am heartbroken. I agree with the above note — that God has given you a precious and perfect gift. Through Grayson, you and Ryan have felt what it means to love your child with total passion, committment and faith. He sparkles with that love in every picture. I pray that God just wraps you in His arms and continues to give you all the grace and strenth you need to carry on. — Joan
Ther are no words…..holding your family in my thoughts and prayers….
Here via basebell, one of your regular readers. My heart aches for you – I can't begin to imagine. I'm so, so sorry. Prayers for you!
Elizabeth I still remember you as a child. Your Mother was a great gift to me as a choir director. I know that you have her strength. You probably don't remember me I think you and my son, Bryan Kacos were is the same graduating class at MCHS. Your beautiful son is a gift if even for a short time. I know how I felt when I read his story. As many people have written it breaks hearts to hear your struggle. You and your sweet family will always be in my thoughts. We cannot imagine your struggle. We can only send love your way.Sylvia Kacos
Oh my dear sister. I don't know you and you don't know me. I've never read your blog before and never knew anything about your sweet Grayson. But today I saw a post about you on another blog I am following. And I believe I read your post for a reason . . . and that reason is so that I can begin to pray for your son, and for you and your husband. As a mother of two (a 19 year old son and a 16 year old daughter) my heart literally aches for you and the news you received. I simply cannot imagine. And the tears are welling up in my eyes as I type. But I can assure you that you are NOT alone in this journey. God is in control of you and of me and of sweet Grayson. This news that you received on Monday did NOT surprise God. So today, I pray that God will touch Grayson. I pray for healing. And I pray for you and your husband. That God will send the Comforter, the Holy Spirit, to strengthen you and encourage you when you think you have no strength left. I pray that God will surround you with others who will pray for your family. And I pray that God will show Himself to you each and every day. Show His love and His mercy. I will continue to pray. May God bless you and may God bless Grayson.
Sending you so much love and light, to you and your family.
I don't even know how I stumbled upon your blog, but I'm glad I did. I don't know you but my thoughts and prayers are with you and your family. Stay strong.
Thoughts and prayers are with you right now.
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I am so very sorry. I am wishing your family strength and perseverance. I know another IF Blogger who is dealing with a child with a terminal illness. I leave her link in case you want to see how she copes with this awful news: http://worldofwinks.wordpress.com/author/worldofwinks/Your family is in my thoughts.
I am so incredibly sorry. Sending love…
I wished I knew what to even say…but truth is, I don't. I've never been in your shoes, but know that I feel your pain. I'm incredibly sorry to hear of what your family is experiencing and will keep you in my thoughts and prayers.Happy Birthday to Grayson! I surely hope it's one that is out of this world! :)Sending you virtual hugs….
Elizabeth, I'm so sorry! I cannot imagine the loss of a child, at any stage. My heart goes out to you!I'm grateful you're a believer and I can leave this Scripture for you that sustained me when I experienced gangrene and amputation about 11 years ago:13 I would have despaired unless I had believed that I would see the goodness of the LordIn the land of the living.14 Wait for the Lord;Be strong and let your heart take courage;Yes, wait for the Lord.He will be there for you. I'll be praying, and will add you to the prayers of my new church.Love,Paulina Stagg
Here from LFCA… No words. Thoughts and hugs to you and your family.
I just came over from lfca and wanted to tell you how sorry I am.
I am very sorry and I am praying for you.
My heart goes out to you at this news. My niece was also diagnosed this very rare disease–and was given a life expectation of one year.In one month, we will celebrate her 18th birthday.
I am so sorry to hear this. I pray that God has bigger plans for your family and for Grayson.
My heart and prayers go out for you and your family. I cannot even come close to imagining what you are going through at this time, But I can tell from reading your blog, that you and your family will make it through with Christ at your side and will give Grayson a wonderful life! God has Blessed Grayson with such a wonderful and loving family!!Jill F,Friend of Sharon Robinson.
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Don't know what to say just like everyone else. I know that y'all love him so much. Every time I talk to Ryan, he talks about G-man. I hope Kindergarten is such a wonderful experience for everyone involved especially him. I hope y'all take many pictures of this special time in his precious life. God bless y'all.
[…] worst day of my life. I was blindsided with the news that my not-quite two year old finally had a diagnosis, and it was terminal. For weeks (months? years?) after that day, all I could I focus on was Grayson […]