top of page

Day 163, can that be true? How has the time gone by so quickly? August is here! Ethan is doing very well. He definitely loves the constant attention his nurses give him. Someone to cater to your every need, who wouldn't love that? It's been great to see them get to know him. This was a big concern for me, often questioning whether they would understand what each of his cries meant. If he was having a bad day and cried for hours on end, would they be calm and adjust the routine to fit his needs that day. Every day is different, but thankfully they have all taken the time to listen to Ethan and things couldn't be better.

He enjoys his long walks in the Florida sunshine and then its bath time, followed by lunch. Ella sneaks in a kiss and a squeeze every now and then. Some days she requested that we let the nurse go home early because she wants him all to herself. Her adjustment to this whole change has been astonishing. Our Ella is beyond gracious and the love she has for Ethan is unconditional.

We had a few telehealth calls with Ethan’s specialists that have all requested bloodwork and imaging. I have yet been able to muster up the courage to take him. When is the right time? I go back and forth on scheduling early morning appointments so we are the first to arrive, maybe things will be cleaner. Somehow, I convince myself not to take him. I know this is something the doctors need so hopefully I will be brave enough to leave my house.

On a happier note, Ella and I were able to spend some much needed time with family. My mother and sister, along with my three amazing nieces, had a nice weekend at my brother's place in central Florida. I drove up with my sister, two and a half hours of pure fun! We've always loved a good road trip. My mother drove up with her four granddaughters, I am pretty sure the majority of that car ride was them making fun of the music she listens to but great memories either way. We laughed, some cried, and we definitely ate our weight in ice cream. This trip allowed me to recharge and relax a bit. Thankful for Holden as he held down the fort and cared for Ethan while we were gone. We are excited about all the things to come as this year's end approaches. My family has been so touched and want to personally thank each and every one of you for helping strEngTHAN grow.

Odd. Unsettling. Unexpected.

A few words to describe this bizarre half of the year. And no, I’m not just talking about this pandemic. These past few months have once again revealed my family's strength in overcoming the many obstacles life throws our way. The words ‘Home Sweet Home’ have never rang truer. This year started out with Ethan continuing to show regression, but it wasn't until February that we knew that our lives were going to change irrevocably yet again. Ethan was aspirating with every feeding so he was admitted to the hospital that same day. We quickly understood that G tube surgery was necessary within the next couple of days.

A familiar feeling of fear immediately set in, but then again, the unknown is usually a scary place. I knew this was something he would eventually need, but I still wasn't fully prepared for accepting the truth that my son would never be able to feed by mouth ever again. Fast forward a few months, and I wish I would have done this sooner! Unbelievable how quickly we can adapt to something we were so scared to deal with. I can proudly say that I have overcome a lot of my fears with these new changes. Ethan gained a significant amount of weight once he was able to get food into his belly. The difference in him was incredible!

As we slowly navigate through this journey with Ethan, it's hard to know what's next and how we can prepare. Just as we were getting comfortable with being back at home and looking forward to Holdens’ birthday and spring break, we learned about COVID-19. GREAT just what we needed! There comes that fear again. What if we’ve been in contact with someone who was positive? What if we were exposed to it while at the hospital? Thankfully, we are all doing well. Holden was able to take time off to stay home from work. We all really enjoyed having him with us every day!

Ella quickly adjusted to virtual school and loved that she was able to spend all hours of the day with her brother. Blessed that they had this time to bond and grow together. She is the BEST big sister in the world! That is undeniable. She hears my alarms go off and springs into action. I have alarms at all hours of the day for medicines, feedings, and other things pertaining to Ethan. She hears him hiccup and she knows it's time to vent him, she even helps to disconnect him from his feedings. Her compassion blows me away. I envy her patience, she has been so mature and understanding. She always knows when mommy needs a minute to be alone and when mommy needs a helping hand.

Speaking of a helping hand, this week a professional helping hand has started working with us at home. I was hesitant to allow a stranger into my home to handle my son. What kind of mom am I if I can’t care for him? There were so many negative thoughts prior to me agreeing that this was a positive thing for Ethan and not such a bad thing for me. Hard to swallow my selfishness sometimes. Now I regret waiting this long for some assistance. She has been an amazing help! I can now share my time with Ella and still have time for household chores. An unfamiliar feeling of relief.

I’m not sure what the future holds for us and Ethan, but I’m grateful for the support of my family and our new caretaker. I hope we can all navigate through the remainder of this year safely together. Wish us luck!

bottom of page