Never Trust Your Fears, For They Don't Know Your Strength.

It’s crazy to think that it’s almost been a month since we came to the hospital with Mateo for a routine procedure that turned into a nightmare. Reflecting on this past month I can see and feel many moments of sadness and despair; when we got the MRI results, when Mateo had a seizure, when he got diagnosed with dystonia, when he got two infections at the same time, man what a hard month! However in all that hardship, I can also see glimpses of beautiful moments like; when the CCU staff cried alongside me, the immediate care and compassion given to Mateo and our family, the first time Mateo opened his eyes and looked at us, when he started moving his arms and legs, when we knew he could hear our voice as he calmed down whenever he heard us, but the BEST moment of the month was last week - when he LAUGHED at one of his favourite Coco Melon songs “head, shoulders, knees, and toes”. That moment was everything for me, and it is the one thing that I had been wishing and praying for, that he would smile again, that he would show us that he can be happy even after all of this. Ever since then we have been playing that song for him often, and every time we do HE SMILES. His smile - oh his smile is EVERYTHING.

Our strong boy is back. He might not be able to move his hands, or legs, or sit, or run, but he can smile and he has the will to be able to make the best out of everyday and work hard to rehabilitate. He has already exceeded all of the doctors expectations, by being able to see, hear, communicate, swallow, feel emotions of sadness, pain, and happiness. And we look forward to walking by his side each step of this journey.

Despite what some doctors may believe about the brain. We are certain that Mateo’s brain is healing and it’s amazing to see! His brain is rewiring itself everyday making new connections, and his body is making new cells that will help in his recovery. He is doing everything the doctors assured us he would not be able to do after being diagnosed with a Severe Hypoxic Brain Injury. He is rising from the ashes like a phoenix, and like a lotus flower blooming in the hardest of terrains. Mateo's recovery in just 4 weeks has been nothing short of a miracle. If you didn't believe in miracles before, I hope that now you will <3

We are still at the cardiac ICU as Mateo finishes his antibiotic course for a respiratory bug and a UTI (which he usually gets when we’re at the hospital). Mateo is not needing any oxygen, and is back to his home settings on his vent. Slowly we will work towards him not needing a vent when awake, but right now his little body and lungs have more healing to do. In the meantime we rejoice with every little thing that Mateo does, and we celebrate each accomplishment that he makes - like we have always done. Mateo’s journey has been far from easy, but he is resilient, he is strong, he is courageous, and he has the biggest will to live and enjoy life than I have ever seen.

Once Mateo is done his antibiotics, and hopefully the new dystonia medication takes affect, we will be transferred to Holland Bloorview for brain injury rehabilitation. We have been there before when we needed to learn how to work his ventilator. We loved the staff there and are looking forward to seeing them again. A couple years back Mateo took his first steps there, and we look forward to the many firsts that he will accomplish at Bloorview this time!

We have faith, and our faith gives us hope. And it is that hope that fills us with energy to wake up every morning and get through the hardest of days, and see the positive side in the cloudiest of times. Mateo is truly something else, he has taught us so much in his 4 years of life, and he continues to teach us something new everyday. We admire him, and respect him, and above all we love him with an unconditional and boundless love.

We have so much to be grateful for, and we are. Though I want to clarify that the above pictures are only showing you snap shots were we SMILE and REJOICE because Mateo is having a good moment in his day - A Good Moment - but the days are hard and the nights are long. I cry almost everyday on my way home. Why? well Mateo still weaning off the hydromorphone and feels very nauseous/restless/uncomfortable/ because of it. He also feels stomach pains from the 3 antibiotics that he takes 3 times a day, and that causes him to be very dystonic, and the spasms cause him so much distress, he cries out in pain and desaturates (drops his oxygen level by holding his breath and we have to give him supplementary oxygen). We are pretty much massaging his legs non-stop to be able to help with the spasms so he won't be in so much pain. We also have to give him nausea medication, and other strong medications that sedate him to allow him to rest for at least a couple of hours without being dystonic. In a nutshell, anything that causes him pain/distress triggers the dystonia which also causes him pain (imagine a horrible muscle spasm happening over and over and over). These are the faces that we also see throughout Mateo's day/night :(

So, we do what we can to make his good moments last, and we persevere and get through each day. By Monday he will be off all antibiotics so that should help. We have to be strong for him every second of every day. He is also very sensitive to our feelings and emotions, thats why I cry on my way home, as I don't want him to see me in distress. I pretend everything is okay for him, and I am calm even in the hardest of times, telling him that everything is GONNA BE OKAY (song below by Jenn Johnson) to be able to get him through whatever he is enduring. This song was dedicated and sang by the amazing music therapist Hanna on a really hard day for both Mateo and me, the song gave me strength, and I have it on repeat in my head, because I know that it's gonna be okay.

We are grateful to God, to our family, to our friends, to the staff at Sickkids and to our community for the love, kindness and support that everyone has given us. Lots of love <3