-
The hard
Christopher and I were lounging in the pool over the weekend and I realized it was time for his Vimpat, one of his seizure medications. I asked my husband if he would go inside to grab me his syringe I had packed and a water flush. We floated over to the pool steps, I administered his medication and flush, and then we pushed off. Alexander was sitting on the edge of the pool and said “taking care of Christopher is hard.” Sometimes he says these things just as observations and no other reason. The older he gets the more and more he realizes what needs to be done to care…
-
Patience
It’s a virtue. Right? My entire life I have been a patient person, never getting upset in traffic or tapping my feet when the customer in front of me is telling the barista her life story after the order has been taken. OK, maybe I get a little impatient but definitely not enough to write about. I am able to put my “desires on hold for a time.” I can relax and not dwell on the situation that I have no control over. Being a mom of a child who is medically complex and severely developmentally delayed requires so much. It requires a lot more than learning medical terminology and…
-
Perspective
Perspective: “the ability of someone to take into consideration and potentially understand the interpretations, outlooks, or actions of their self and of other people.” (psychologydictionary.org) One of the greatest lessons I have learned since Christopher was born is perspective. I sincerely try to write and share pieces of our life simply for a bit of insight. I want people to know what our life is like raising a child with significant needs. My ultimate hope is to share struggles and triumphs in a graceful way. I never want to come across as complaining or that I’m sharing for sympathy. Believe me, your sympathy is the last thing I want. My…
-
Hope
There’s something that has been nagging at me. Something that has been bothering me. CDG has a huge spectrum. It is incredibly vast. Some individuals are tube fed, some are not. Some have seizures, some do not. Some can walk, some cannot. Some can speak, some can’t. Some are in the hospital for minor illnesses, some are not. It is crazy how the same diagnosis is really just never the same. I am overjoyed for families when they share accomplishments of their children. I am genuinely happy for a family when their child takes unassisted steps. Or writes their name. Or says “mama” for the first time. And yes, there’s…
-
Mine is mine, yours is yours
Raising a child with significant needs has taught me incredible life lessons. It has given me a greater perspective on life. It has taught me the importance of grace and forgiveness. And it has taught me that life is hard no matter what you’re given. We all have something we are dealing with, whether it is on display or hidden away. But the one thing that none of us are allowed to do is judge. Judge one another’s pain. Decide who has more. And decide how each other should feel. There isn’t a scoreboard that coincides with how you are allowed to feel. There isn’t a rating for the hurts…
-
It really is the little things
I took it all for granted with our 8 year old, our first son. Every skill. Every single milestone. Even the tiny, minuscule things. All of it. Even the skills that I had no idea were a big deal. Transferring an object from one hand to the other. Clapping. Tall kneeling. The pincer grasp. Took all of those for granted too. Even the seemingly insignificant things. Sitting in the grocery cart. Holding a spoon. I assumed those were just a “given.” I know this sounds crazy but I took the messy parts for granted too. Potty training. Pulling the toilet paper off of the roll. The artwork on the walls.…
-
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…
-
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…
-
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…
-
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…