Well, wouldn’t you know it that we started the New Year by welcoming COVID into our home?! On January 1st, Keira – one of the most sheltered of all of us – tested positive after an overnighter with grandparents, one of which also (unknowingly) had it.

Thankfully, only the first day was the worst with 100+ degree on-and-off fevers. And it’s been easy sailing from there. No cough or any other symptoms aside from fever. It’s now been almost 3 days with no fever and we are just awaiting that negative test for her to be in the clear.

To say it’s been quite the first week of 2022 is an understatement. With one of her grandparents also positive, they couldn’t help us juggle work and the girls. Our nanny couldn’t come here. Nor could other grandparents who have auto immune sensitivities. So Dave and I divided and conquered. I have been quarantining with Keira in her room while Dave stays with Livvy and Eva on the other side of the house.

As she gets better and better the harder it is to keep her quarantined. And let me tell you, racing behind her with wipes cleaning every surface or toy she touches is no easy feat. She’s fast!

On top of all this, we just found out another grandparent also has COVID! How this is hitting our family now, after all of our travels abroad for Keira’s gene therapy and Livvy’s clinical trial is beyond me. But here we are!

The first night, I’ll admit I was terrified. While I’ve kept COVID related news on the peripheral (because we have our own life-threatening problems) I couldn’t help but think about the horror stories. And I just had an older friend even pass from COVID. Would Keira’s immune system be up for this after all it has been through? My mind raced.

I couldnt help but think of all the people lost or suffering from this virus. Not to mention the many other diseases, natural disasters and million other dangers we face as human beings.

The amount of suffering placed upon any one person can be insurmountable. Unbelievable. Unfair. Downright cruel. But here we all stand, fighting. Fighting for the light. For the good. For health. For hope. For love. For family.

And fighting is not easy! After the past two years of what our family has been through, do I sometimes get tired of fighting? Absolutely. I want Livvy to be free from pain. I want Keira to live the life Livvy deserved. I want Eva to have her childhood back. I want no child to suffer from MLD ever again!

So to lose Keira from COVID after all we have done to save her, it’s just unacceptable in mind.

Thankfully, the universe and her immune system agree. She’s back to her normal self and soaking up all the alone time with Mom.

While we had to cancel her family-only birthday party on Sunday, we are so relieved to know that we won’t be in a hospital and we will still be able to shower her with the gifts and attention she so deserves. Our baby girl is turning 2!! And she has lost ZERO abilities to MLD thanks to the gene therapy she received in Milan. That is what I plan to focus on remembering from this time in our lives. NOT COVID!