Month: April 2014

Miracle Mondays – Focus on Love

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“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart” – Helen Keller

They say that our eyes are reflections of our soul. Our eyes tell greater stories than our mouths ever could. They can speak of love, despair, hope, curiosity, fear and excitement. They can be open but not truly seeing and they can be closed and filled with vision. They can reveal our strength, our wisdom, even our experiences.

When Theo was initially assessed following his cardiac arrests, we were told that he was cerebrally blind and it was unlikely that he would ever see again. This was a hard diagnosis for us to process but I quickly reminded myself that sight does not define our feelings and our eyes are not the sole gateway to our heart. Theo’s disability means that he may not be able to see or communicate the way we do but he feels our hugs and kisses the same as everyone else and I have complete confidence that he constantly senses our love.

Since being discharged from the hospital, we’ve noticed that Theo responds to light, and in the last two weeks, his eyes appear to be tracking and following us more frequently. We are hesitant to interpret this change as a development in Theo’s vision and processing (as we’ve been told it’s difficult to diagnosis at this stage) but we can’t ignore this potential improvement either. Theo’s improved focus might mean that neurological connections are reforming (although we know the likelihood of this is rare) but if not, we are reassured that he will always feel our love clearly.

Today’s miracle is a greater focus on a love that cannot be seen.

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Miracle Mondays – Easter Blessings & New Beginnings

We celebrated Easter with Theodore this past weekend. Mark and I will embrace the memories of these last few days forever.

Easter, the Christian celebration of Jesus’ resurrection, is often associated with new beginnings. Christ’s rebirth parallels the seasonal birth of spring – a time when the earth awakens from its slumber, promising of new life.

As we painted Easter eggs with Theo in our lap and participated in an egg hunt with his cousins by his side, I reflected on our family’s rebirth. As individuals we are constantly evolving and growing, our lives changing and adapting every single day and celebrating Easter with Theodore allowed me to reflect on the new beginnings (and new perspective) for our family and our son. Theodore couldn’t run alongside his cousins in the egg hunt but he enjoyed the fresh air and with his Dad’s help, his basket was never empty. We are living differently now but we are living life as fully as we can, embracing our rebirth along the way.

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Painting and finding Easter eggs! 

Theo also participated in Swieconka with Mark’s family for the first time. This is a Polish celebration in which a basket is filled with symbolic food: eggs which celebrate the emergence of new life, as well as sugar, salt, bread, and meat, all which represent Christ’s life and sacrifice. The basket is brought to the church on Holy Saturday where it is blessed. Its contents are then shared with friends and family with blessings of good health and luck. We were initially hesitant to bring Theo to the celebration but his breathing was strong the entire time and our memory of this family tradition is one of this season’s many blessings.

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Theo and his basket; blessings during Swieconka. 

Today’s miracle is our family’s celebration of Easter and its symbolism of new beginnings.

Miracle Mondays – Chariot Oasis

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Theo loves going for walks and it’s one of the things I love doing most with him. As simple as it seems, this is my oasis. For the brief time that we’re out, he is completely relaxed and I allow myself to forget about the short time I have left with him and live completely in the moment. When we walk through the suburban neighbourhood, I am no longer a caregiver to my palliative son, I am simply a mom taking my little boy out for a walk.

Today’s miracle is a warm spring day and our chariot – a stroller that helps us live in the moment…and comfortably holds an oxygen tank!

Adventures of Theo

The unfurled sheets on the cot next to Theo’s hospital bed, the empty coffee cups scattered on the bedside table beside the feeding pump, the hurried footsteps of nursing staff outside our door, the gentle hiss of the oxygen concentrator. These are the all too familiar reminders of the fragility of our son’s life.

Theo was admitted back to the hospital yesterday after suffering from several episodes of breathing apnea. We were certain we were going to lose him during the night but he has pulled through and seems to be breathing stronger this morning. He is being administered oxygen and with a portable machine now available to us, we’re hoping to head back home later this evening.

This recent hospital visit has emphasized the short time we have left with Theo and we realize now that we’re not living enough. It will not be easy but with a portable pump, suction and oxygen machines, we are not confined to the house. For the remainder of our son’s life, we will create as many memories possible not defined by Theo’s illness or limitations.

To start: planning Theo’s first birthday party. We never had the opportunity to celebrate with him because he was on life support at the time. Next: visiting the CN Tower and exploring the Toronto Zoo, two places Theo has never been. After that, our only limitation will be battery life.

Life is short and time truly is precious. Let the adventures of our precious Theo begin and let their memories endure forever.

Miracle Mondays – A Warm Embrace

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I meant to post this last night but I didn’t have much time to step away yesterday. Mark left early Friday morning to take care of our house and Theo came down with another respiratory infection Friday mid-day – causing persistent vomiting, laboured breathing, sleepless nights and even more discomfort than he normally experiences. With Theo’s medical team’s support, we stopped his feeds, adjusted his medication, suctioned him constantly, and monitored him closely. I couldn’t leave his side and Mark anxiously kept a close eye on flight schedules.

I’m very happy to report that Theo appears to be recovering today: the vomiting has subsided, he’s back on regular feeds and has spent the last day sleeping comfortably!

I don’t know if we’ll ever fully adjust to our new life: having a chronically ill son who requires constant medical care and attention. But the physical demands of our new normal will always be easier to adapt to than the emotional demands. Sleepless nights will never compare to tired hearts. And, the emotional demands are always hardest for me when Mark is gone and I have to shoulder them individually.

So, when my Aunts showed up for a visit this weekend, the timing couldn’t have been better. Their hugs, hope and homemade cookies eased my mind (and stomach) and allowed my tired heart to rest.

Yesterday’s miracle was a warm, loving, embrace for Theo and myself when we both needed it most.

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.