Questions and Answers

How’s Theo doing?

My usual response: He’s doing well. Or, he’s having a good day. But, truthfully – most days I don’t know how to answer this question.

In my writing and in life, I seek to celebrate the positive in our lives and Theo’s recovery. This means rejoicing when he reaches small milestones such as smiling and regaining head control. I’m not denying that I don’t have moments where I’m lost in pity and despair – these happen fairly often but if I didn’t extract the optimism from our situation, I’d lose myself permanently. Many of our friends have young children and each one of our siblings had a child last year. That means Theo has four cousins within seven months of him. My healthy, vibrant nieces and nephews (whom I love like my own) are walking and laughing and instead of joining them, Theo sits immobile, crying in pain. It’s during these times that I can’t help but think of how unfair life is. And, my optimism fails me.

We have good days and bad days, good nights and bad nights. Theo’s limbs cause him significant discomfort. The slightest change in position results in him screaming out in pain. So, we can hold him (in certain positions) but this is usually after he’s received his pain medication and even still, it takes a while before he settles. Theo will eventually lose his feet and parts of his fingers due to necrosis – they cannot be saved. His wounds (where the necrosis hasn’t reached the bone), which extend up his hands and to his knees are healing but the healing process is slow and long. We change his dressings daily, which is necessary to prevent infection but this is incredibly painful for him. A fever (even low grade) could be an early sign of infection so each time it happens we find ourselves nervously and closely monitoring Theo’s status…fearing the worst.

When I was a new mom, I remember reading one of the many resources catered to tired, helpless mothers searching for answers to their crying sleepless babies – in other words, normal behavior for an infant. You should be able to distinguish between your baby’s cries from relatively early on, one author suggested. I’ll admit that in those first few months, before I could decipher his way of communicating, I usually found myself nursing Theo whenever he cried. Knowing that this satiated his need for both comfort and hunger eased my worries. Now, I’m struggling to decipher Theo’s cries once again though for different reasons. Theo often cries because he’s in pain, sometimes because of his underlying neurological condition and sometimes simply because he wants to be comforted – a response typical of any other child his age. Once again, I am feeling helpless and perplexed but Theo and I are adjusting and just as he’s learning how to communicate with us, we’re learning how best to comfort him.

Is Theo improving?

Yes. Maybe. I’m not sure. Some days he seems to be getting stronger and others, when he’s likely battling a virus or an infection, he’s lethargic and shows signs of decline. We’ve been on this ride long enough to know that we’re not exiting the rollercoaster anytime soon and that any indicators of improvement will be small and infrequent but each and every one will be celebrated.

We may not have any answers but this in no way means that we’d like to avoid these questions. In fact, we welcome them – please continue to ask about our little warrior. Even if Theo’s status is unchanged and his recovery is slow, every time you ask about him it reassures us that his fighting spirit has not been forgotten.

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5 comments

  1. Theo’s current state is a question I would love to ask everyday. I share each one of Theo’s milestones and set backs with my daughters. They ask me all the time how Theodore is doing, and ask to see pictures of him. Theo’s fight will never be forgotten in my house, everyday we check this blog in hopes to see something new!

    Take care, xx

  2. Thinking of you guys still every day. Know that you have the support of hundreds of people who know and love you (and probably hundreds more who have learned of Theo’s story from afar) and positive thoughts and prayers are being said for you guys from around the world.

  3. I think of all of you so very often and send you love, light and good energy to keep on keeping on. I imagine that each of us who reads your posts can understand pieces and parts of what you are experiencing, because of our life experiences, but of course no two situations or responses are ever exactly the same. My partner, Dan, once said at a terrible time that although no one really knows what to say, every kind word, every caring gesture, every moment of showing up helped fill his reservoir a little bit…enough to keep going. I agree with that and have also relied on others’ kindness to figure out how to stay vertical and do what needs doing, to keep loving and finding gratitude. So today I’m sending you three, and your wonderful families, a hope for moments of joy and moments of rest.

  4. His fighting spirit certainly has not been forgotten. We think of all 3 of you often, and are so encouraged by your updates… love and prayers to all of you.

  5. I was wondering how he is and now I came across these blogs. We continue to pray and won’t forget him!! Xo

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