Hurler Syndrome

When I have to cancel plans last minute, it’s not about you. When I can’t commit to going somewhere because I do not want to impose on the few people who can watch my son, it’s not about you. When I don’t call to check in or have a delayed response to something important in [...]

When my son got his unrelated cord blood transplant, I lived in the hospital with him for two long months. For those months the small room with a crib, a couch that unfolded into a bed, a bathroom, a small closet and thankfully a huge window that looked out onto the front entrance of the [...]

Having a child with a rare disease like Hurler’s syndrome, we are extremely lucky as we have a huge network of support. We have had a ton of family, friends and even strangers surround us with prayers, support and positive energy when we face various complications and issues with our son. Additionally, I am part of [...]

Within the first week of our son’s diagnosis with a rare and progressive disease, my husband and I were browsing a Home Goods store.  We were feeling angry, confused, numb and scared whenever we thought about his new diagnosis, and we thought about it most of the time. While browsing, a sign caught our eye, [...]

This weekend my husband and I got into a fight. I started it. I made a comment about how I made dinner and cleaned up the kitchen and still had to get the kids to straighten up the living room. He felt like I was saying he does not do anything to help, got defensive [...]

Everyone struggles at times when it comes to making a decision. You never know for certain if you will be making the right choice or if unforeseen issues will arise with your choice.  Some choices you make will be well thought out, while others will be done in the spur of the moment. For the [...]

I have a confession to make. Yesterday I was driving home and I heard a particular song on the radio that reminded me of my son. My thought while listening was that the song fit his personality and would be a great song to play at a celebration of life for him. This then led [...]

What does it mean to be a good mother? For some people it may mean being able to have quality time with each of your children and building those individual relationships. For some people it may mean that all of the child’s needs are met. For others it may mean protecting them from some of [...]

“How is he doing?”  “He is better now, right?”  “Is he no longer is sick anymore?”  “All good with him?” “He seems to be doing so well!” These are much more loaded questions/comments than they would probably be for a typical child. There are many different ways I have been asked how my son is [...]