• life lessons

    Our visit to the NIH

    We recently took a trip, not to be confused with vacation, to the National Institutes of Health in Maryland to participate in a research study. This study is for CDG’s and will give researchers knowledge to *hopefully* help people in the future. The first thing you will read when consenting to the study is it is voluntary. It’s voluntary and you can withdraw at any point. It also clearly states that you may receive no benefit from taking part in the study. Most of this I disagree with. It may be voluntary but it’s necessary. It’s necessary for children like mine to participate. Without them, there is no study. Without…

  • life lessons

    Our divine gift

    Little by little the thread starts to unravel. It starts out just a tiny piece hanging from the edge of the fabric, barely noticeable. Then it pulls a little more. Then more. All of a sudden it’s so big and you had no idea how it got like that and when.   When did I start fraying?   I didn’t realize parts of me were fraying. I didn’t realize that there were parts of me that had been through so much in such a short time and they were so sad, full of grief. I tend to tuck things away. I hide them so I can keep moving forward.  I…

  • life lessons

    One day

    I know there’s many of you who won’t get what you really want for Mother’s Day. Pedicures are great. Flowers are beautiful. Massages are wonderful. But that’s not what you want. I know all you want is one day. One day where you don’t have to worry. A full 24 hours where your mind is free from thinking of all of the what-ifs. What if he never talks? What if I never hear is sweet voice call out to me? What if he never walks? What if we have to transfer and carry his growing body everywhere? What if he gets sick? What if he’s exposed to too many germs…

  • life lessons

    Remembering

    I don’t usually write about death. And I don’t particularly like to talk about it. I know it’s a reality of ours. Really, it’s a reality of all of ours but even more so when your child has a life threatening condition. I’m going to let you in on a little secret. It’s terrifying. It’s terrifying knowing that your child could get a common illness and then all of a sudden that common illness snowballs into something much more and then they’re gone. I can’t even think about it. But the other day I realized that I think about it far more than I even realize. I was scrolling through…

  • life lessons

    You never know

    I expected joy. I expected so much happiness. I didn’t expect the tears. On the way home from the airport after my weekend in San Diego I started to tear up. I was telling my husband all about the medical conference I was at that was focused on congenital disorders of glycosylation, the genetic condition our middle son has. I told him there was so much buzz and excitement regarding research. The medical community and parents are determined to find a treatment and cure. There’s hope. But when I talked about the kids I started to cry. It was hard. It was hard for me to see the children walking…

  • life lessons

    The good ones

    I don’t know how you do it. I don’t think I could.  When someone says these words to me I almost immediately want to respond with you could. But then I remember what the nurse in the hospital said to my husband and I when we had our 3 month old son. She looked at us and said your boys are so blessed to have you, you are some of the good ones. She went on to tell us how there are many times as a nurse she is afraid to send a newborn home with their parents. So this got me thinking… I know quite a few of the…

  • just for fun

    Teeny tiny self care tips

    Self care isn’t exactly something on the top of my list. I know it’s important and people are always reminding me to remember to “take time to yourself.” If you are anything like me this can be extremely hard to do. I usually make sure everyone around me has all that they need before I think of what I may need. I am the opposite of high maintenance. I pretty much am just maintaining. 😉 I know that so many of us don’t have the time to get out for hours without any kids, and even if you have the time there so many other reasons why you can’t! Finances…

  • Uncategorized

    A Valentine for my Village

    It takes a village. A tribe. A family. Raising a child with special needs isn’t easy, but having supporters, near and far, make the journey a little easier. Your village may consist of 5 people or 50. Your tribe may be filled with online friends or a local community you see face to face. Whoever makes up your village is irreplaceable, I know mine is. Valentine’s Day is typically romantic, filled with chocolates, hearts and roses, but I’d like to express my utmost gratitude for our village on this day with nothing but words. Happy Valentine’s Day to our village. I love my tribe. I love our family. My life…

  • life lessons

    Reminder for the new year

    Our van door wouldn’t shut all the way the other day. It wouldn’t latch when it closed so the interior lights would stay on and the buzzing wouldn’t stop. It was annoying, frustrating, and a huge bummer! I really didn’t have time to get it into the shop and I had to cancel a couple of appointments because I was afraid of having a dead battery, not to mention it was probably unsafe. My husband was more angry than I was. He focused on it and said something like “why can’t we catch a break?!” I looked at him and said “are you kidding me right now? We caught the…

  • life lessons

    The waiting

    Minutes after our newest addition was born I held him in my arms and I started looking him over. I started searching for symptoms of the genetic condition our 4 year old has. I felt like I would just know if he was affected or not. As my husband looked at me and asked about his eyes, I said to him “he doesn’t have inverted nipples.” The nurses in the room were listening and looked at us a little peculiar. I’m sure they wondered why we were picking our beautiful boy apart looking for something “wrong” with him. I told them that we were looking for clues as to if…