Mother’s Day Rings Different After D-Day

It was a few days before Mother’s Day this year that Dave had to remind me that it was coming up the next Sunday. And immediately I got that same feeling of dread and guilt that I felt on my first Mother’s Day after receiving Livvy’s diagnosis (coined D-Day). I was sick to my stomach.

My first Mother’s Day after Livvy’s diagnosis. She could still talk, still sometimes sit up on her own and we had no idea about Keira’s diagnosis yet. My mom surprised me with Eva’s shirt that says “Strong Like Mom” and it made me tear up (and still does). From the picture you’d have no idea what we were going through. But internally I was broken.

While I know it’s not my or Dave’s “fault’ that this has happened to our children, you can’t help but feel like a bad parent when your child is terminally ill and there’s literally nothing you can do to fix it and make them better.

That first Mother’s Day and Father’s Day after we received Livvy’s (and then Keira’s) diagnosis were gut wrenching. Dave and I didn’t want to celebrate; we were heartbroken. I felt nauseous for months after receiving the news. It was one of the worst times of our lives knowing not one but two of our children has this terminal illness for which there was no cure. Why would we then turn around and celebrate us as parents?

Mother’s Day, and Father’s Day, suddenly went from being days to celebrate us as parents to days we dread.

While it seems each year it has gotten a tiny bit easier for me to process, it’s still a day I do not want to celebrate. I’d love to erase it from the calendar altogether if I could. But I know each year Eva, and soon Keira, will come home with gifts for us that they made at school. And we’ll be forced to put on those smiles and “celebrate,” at least taking comfort in the fact that it’s something the girls enjoy celebrating. For us though…I think it will always be hard.

What we do take comfort in though is the fact that we have done literally everything in our power to get them anything and everything we possibly could – whether it’s the only clinical trial in the world for symptomatic MLD patients, a life-saving gene therapy treatment in Italy for non-symptomatic MLD patients or just all the hugs, loves and happy life experiences we could think of. We would do anything for our girls.

And in the end, I know we deserve to be celebrated. But on days like those we just have to try extra hard to enjoy it.

Goodbye Sherlock

Saying goodbye to someone we love is never easy. Whether it’s expected, in the case of a terminal illness like MLD, or unexpected, as was the case with our dear 7-year old French bulldog Sherlock this past week.

After a week and a half of on/off appetite, throwing up and being generally lethargic some days, we headed to the vet. Surely, it had to be something weird he ate that was stuck in stomach because he would eat everything in sight! After his xray came back all clear we took him home and changed his diet to chicken and rice. Should his symptoms continue then we were to head back for bloodwork.

That evening Dave’s Mom took Eva (our oldest) for the night and thankfully she did because in the morning we found Sherlock had passed away in his sleep (and Eva was normally the first awake and would always get the dogs). We’re not sure whether it was cancer or maybe heart failure but either way it was crushing nonetheless.

While it was the hardest on us and Eva, I hope that having this close, and unexpected, experience with loss will help her when it comes time for Livvy to leave us as well.

I broke out sobbing in front of Livvy that morning and she actually laughed at me, thinking I was just making a funny noise to be silly. But I made sure to talk to her about Sherlock being in heaven and how we will get to play with him again when we go there. That prompted a really big smile (this isn’t the first time we have had a private conversation with her about heaven).

I assumed Keira would be mainly oblivious and possibly ask where he was. When she didn’t, I explained to her that Sherlock went bye bye to heaven and showed her the adorable paw print and picture frame that was given to us by All About Restful Pets (more on them in a second). Hours later she remembered the paw print and picture, looked at it and said “Bye bye Sherlock”. It took everything I had not to tear up right then and there.

But back to All About Restful Pets. They are who my mother called for me that morning when I told her the news sobbing. It is a company owned by her friend Bonnie which goes to people’s homes to put pets down peacefully and/or take them away for the family to be cremated (or whatever their wishes may be). She showed up at our house within the HOUR! And this was during morning rush hour in the fifth largest city in the nation. I was beyond grateful to have her there and help us through this process. For anyone in the greater Phoenix area, I highly recommend them.

Sherlock is greatly missed, and we can tell Watson misses him too (even though he is generally just a grumpy old man) so we have been giving him extra love and cuddles.

Rest peacefully little Sherlock! We love you!