Theo’s Update

Yesterday, we returned to McMaster Children’s Hospital for a follow-up appointment with Theo’s pediatrician and plastic surgeon. Theo’s wounds are healing well but his digits are starting to auto-amputate and he required an assessment for amputation of his legs. His plastic surgeon is pleased with the regeneration of healthy tissue but believes that Theo is not strong enough to undergo the sedation required for surgery. Theo’s pediatrician also confirmed that Theo’s health has declined since his last visit – his breathing has become progressively more struggled, he is vomiting consistently, and he is now constantly dependent on oxygen. We have seen signs over the last few weeks, which we suspected would indicate that Theo hasn’t improved, but hearing our fears reaffirmed was devastating.

We’ve had several end of life discussions with Theo’s doctor now and I respect and appreciate his honest and straightforward approach. He has endeavored to ensure that we are prepared for the inevitable whenever that time comes. But how can you ever prepare yourself to say goodbye to your child? I once read that having a child is like having your heart walk outside your body. One day soon, I won’t just be burying my son, I’ll be burying my heart too.

I now know that Theo isn’t destined for life on this earth. His constant suffering reminds me of that daily but truthfully, I’m afraid. I’m afraid to say goodbye and I’m afraid to live without him. And I’m afraid of not knowing if I’ll still be able to hold him tomorrow…or the next day.

Life doesn’t change for us. We continue to take it one hour at a time and count our blessings for each additional day we get to spend with Theo. Theodore’s life is not about the happy ending, it’s about the story. The story of a beautiful, inspiring, little boy that has shown more strength and spirit than anyone else I know. And, I’m so proud to call this little boy my son.

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17 comments

  1. I think about your beautiful son, Theo, each and every day. Although little can be said to bring comfort, so many people are sending their love and prayers for sweet Theo. Stay strong little buddy.

  2. My thoughts and prayers go out to Theo. What a beautiful little warrior. He will always be blessed, and nobody can take that away.

  3. STAY STRONG! The Doctors have said this before ,why beleive them now! GOD IS IN CHARGE NOT THEM! .IN THE NAME OF JESUS CHRIST THEODORE BE HEALED! ALL THAT READ MY POST PLEASE PRAY THIS! ASH AND MARK GOD IS HOLDING YOU UP IN THIS TERRIBLE TIME PLEASE KEEP PRAYING TO HIM HE HAS NEVER LEFT YOU ! KEEP THE FAITH HE IS WITH YOU! SO MANY ARE PRAYING FOR ALL OF YOU. MIRACLES STILL HAPPEN ! THEODORE IS PROOF OF MIRACLES !

    1. Dear Ashlee & Mark, I sit here crying as I read the latest on Theo’s condition and prognosis from the Doctors. I keep praying to God to strengthen your family during this difficult time and for you both to keep the faith. Know that no matter what, God’s will, will be done. It truly breaks my heart to know that Theo is suffering; unfortunately we all have our crosses to bear and even little Theo has his. There is a purpose, a reason for everything that happens to us here on earth. None of us know for sure what God has planned for any of us but we know that he’s in charge and has astonished people/doctors all over the world since time began. No one can truly know what your journey feels like but God and you both. It is your walk, your path; but always keep in mind that God is carrying you now as he always has and always will. Little Theo truly is a warrior and everyone wants him to pull through. Never give up. Every day that he’s here, is a MIRACLE. Keep focusing on the positive things that are happening to Theo. Sending prayers, hugs and love your way. Take care of yourselves too. God Bless
      Monique.

  4. I am a complete stranger to your family. I feel guilty saying that this is actually the first time I have heard about your precious little boy. While normal chaotic life has been the same old for me, it breaks my heart to hear what your beautiful family has been, and continues to go through. I sat here tonight and read your blog. I cried like a baby and although I don’t know you, I desperately wish there was something I could do to take some of your pain away. But I felt the need to thank you. While I was reading about your journey, my 8 year old daughter was watching TV in my bed. I wasn’t paying attention to the time and when I realised it was past her bedtime, I went in to tell her to turn off the TV. She came out to the living room and asked me if I loved her. I was both surprised and hurt at the thought that she even had to ask me that question. She then proceeded to explain to me her fears regarding death. I know….pretty deep for an 8 year old, but I think she is at an age where she is starting to realise that life eventually comes to an end here on earth for all of us. Not really knowing how to respond to her worries, I found myself using some of your words. I told her that making each and every day count is all we can do. Every day presents its own little miracles, we just usually don’t take the time to notice them. On most other nights I probably would have rushed her to bed and told her that we would “talk about it tomorrow”, as I so often do, which of course, usually doesn’t happen. Your baby boy knows how much you love him. He is blessed to have amazing parents who hold him and take care of him despite how exhausted and terrified you both are. Nothing anybody says or does right now is going to take away your pain or your fears. But you need to know that Theodore was given to the most amazing parents and for that reason, his little heart will forever be filled with love. He will never have to ask the question: “Did my parents love me?”. And I will spend every day from now on making sure my daughter never feels that she has to utter those words again. I will be praying and thinking about you all.

    1. Good for you, and for your daughter, and for all of us, Melissa. I would say that the best gift I have received and given to the world is making sure my (now adult) children know I love and honour and respect them. I haven’t done that perfectly, but I have done it, and they know. I don’t just tell them I love them; I spend time with them, set limits for myself and them, say no as well as yes, and am awed by the people they are…just as Ashlee and Mark do with Theo. I have buried two of my children, but the whole world is enriched by all of our children, no matter how long we get to keep them near us. Keep up the wonderful job you’re all doing, Melissa, Ashlee and Mark. Love, honour and respect yourselves, as well, for we are all gifts for one another.

  5. Just want you to know that my husband and I have been following your story and we think of your family and your beautiful son Theo every day. We admire your strength and theo’s too. You remind us to be appreciative of every minute and to take nothing for granted. Know that there is a community behind you, sending lots of positive thoughts and prayers your way xoxo

  6. Little Theo has touched and inspired more lives in his short time here with his fighting spirit than I have in 35 years and likely ever will. He is truly an amazing boy and in return, this speaks volumes about his parents. I will continue to pray for sweet Theo. His journey is not over yet…he has more lives to change and inspire.

  7. Always thinking of Theo and asking God to help your precious little boy. Theo is a miracle. Theo has touched so many hearts especially mine. I will now pray again for the strongest little star I’ve ever met. Keep on fighting little fellow. Nene is sending her love 💖

  8. Can’t even imagine being in your shoes!!! As one person commented we’ll still believe and hope!!! Praying for peace and comfort and supernatural strength! Love from Australia

  9. Theo’s reason on earth is clear – he’s teaching us respect, love and to cherish every moment. Thank you for sharing your journey with so many.

  10. Theo is a true warrior. He has fought so hard to get to where he is, and he continues to fight. Don’t give up hope.

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