It's been four years since Chloe suffered from bacterial meningitis. This day four years ago never seems so far from my mind. It stays close to me (to us) always. The memory of it is so clear that I wish I could simply jump back in time to erase the horror and devastation. I still wish I could have done something else, something more to help her. We can't, so we continue to help her, advocate for her, and heal alongside her.
Today, we spent the day with Chloe at Sunshine to share some quiet family time and let the kids play and be together. We decided not to bring Chloe home or take her out for the day but rather be with her where she is more comfortable - at 'Chloe's House' as her cousin, Taylor, has so fondly named it. Reth and I spent a simple and lazy afternoon with all of them by the pond. We ran races between Chloe's wheelchair, Jackson's stroller and Olivia's scooter. They endured our countless attempts at taking photos. We sat together on the rocking bench in the shade and simply enjoyed being together. I was so anxious over what to do as a family since our tradition has been to take the girls to Central Park to play by the remote control boats. Unfortunately, we have realized that Chloe is not so easy to transport with her wheelchair and is not so comfortable on long trips away from Sunshine. I was so nervous that today wouldn't be special because we didn't make a plan but as I sat next to Reth and had the three of them near me, I felt at peace and, dare I say, normal. It didn't feel like a different or special day, it felt like a normal day - an easy, laid back, fun day - and I was thankful.
Chloe has had a fairly calm year. We have had easier appointments with her doctors with most sessions ending with a 'no change' comment. Hearing this is bliss as we have been changing her medicine, feedings, sleep/play patterns, exercise, etc. over and over these past few years. To have no change to our current plan means that we are all doing something right. We bought Chloe a larger wheelchair a few months back. She is more comfortable and supported in this chair and seems to interact more in group settings. She still has seizures but they are more controlled, she continues to be on her feeding tube, she is more responsive and comfortable in her Sunshine surroundings, she continues to move and roll around, and can sit upright a bit more steadily in her new chair. Her eyes are still weak but we will consider more surgery when the time is right, and her team still continues to work with her hearing aid. Overall, Chloe is stable and continuing her hard work.
Our family continues to heal everyday. Some days are still harder than others. We all miss Chloe everyday and it still hurts. That hole, that emptiness - it is always there. We've had tons of happy and exciting moments as a family, some with Chloe by our side and some with her in our hearts and minds. She is always with us, even when she is not, and that's okay. It has been an adjustment to continue moving forward after taking her to Sunshine. Olivia has made more sense of her illness and the devastation to her brain. She doesn't ask so much about when Chloe will be coming home anymore as she understands more the severity of her case. She has found much comfort in her new baby brother, Jackson, and always shares how thankful she is for a new baby in the house. Of course she misses her sister, she is still sometimes lost and sad without her best friend and roommate but she is healing. Jackson has visited Chloe more often these past few months. They continue to growl and cry at each other but it is fun and welcoming to watch their interactions as they get to know one another. Reth and I continue to support each other through this adventure. We are proud parents of three beautiful children who continue to inspire us everyday. We have found strength, resilience, patience and love in each and every one of them and we know that comes from us and what we share. So even though there is some sadness over being a different kind of family, we know we will continue to move forward as a family and overcome the obstacles.
Thank you to those who have reached out to us by phone, mail, and social media, and who have made visits to Chloe. Special thanks to those who have gone, even when we have not been there. Chloe's Sunshine family has let us know what a big difference it makes when they see our family and friends supporting her. We are fortunate to have all of you in our lives. Thank you.
Much love,
Reth, Michelle, Olivia, Chloe and Jackson
