It’s Almost Christmas

Christmas WonderA year ago Will, our newest member of the household was five months old. He was wide-eyed and curious, attempting to turn the pages of his board books. In the next three months, we noticed gradual changes in Will which later became obvious signs of a severe neurological problem.

Over the last eight months, we have turned every stone, looked for every known condition that might lead us to a cause for Will’s symptoms. Will has symptoms of Leukodystrophy, a general diagnosis for a disease process in the white matter of his brain. He has central hypotonia, dystonia, is globally delayed, unable to speak, and a quadriplegic.

This year our ‘together baby’ should be tearing the paper off of every present under the tree, a real terror! He would likely have stripped off the ornaments and lights while I was busy tending to the other children. I wanted that so very much; the craziness of a larger than life toddler. I know that we don’t always get what we ask for; things don’t always turn out as we had planned. As magical as Christmas can be, it can also be a painful reminder of the journey we had in mind. I came across an important reminder of how holidays or other times of the year can trigger feelings of anxiety and depression. Though my feelings are mostly grief and anxiety; I have to be honest with myself and others and acknowledge that these reactions are very real and important to process properly. Take a look at the blog post by Jacqueline Bogg or this piece by M. Lin. Remember to be present with the feelings you encounter along your journey; it’s important to work on all of the pieces of you, especially the not so pretty pieces.

Will’s gift to me is bigger than the sadness and fear I feel about his condition. Though I cry most days leading up to events like Christmas, I have to remember that he has shown me much more than sadness in the last eight months of his neurological mystery. The community who support our family by giving the gift of time, phone calls, messages, and food has lifted our family along this journey. Because of Will we have better seen the beauty of others. Our children have learned compassion, patience, and empathy because of Will. The work that I call my own is part of my ‘iWill’ story. The beauty I see as a result of Will’s gift to others is the ‘WeWill’ mantra I write about. Self-care is the personal work I do to stay strong for Will. My infrequent opportunities to exercise or get my nails done are ‘iWill’ moments. The words I write to help me process and accept this new normal are my ‘iWill’ moments as well. What are your ‘iWill’ moments like? Do you take a moment to think about how self-care fills your own cup?

How lucky are we to have the chance to see the world through Will’s eyes? What does he experience as a little boy with so much love and activity around him?

Family Photo Session

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Background:

My husband works two full time jobs and has two boys from his previous marriage. I have three children from my previous marriage and work part time as an Emergency Room nurse. I am the CEO of the Hagar-Christensen household. In 2014 we welcomed our ‘together baby’ to our blended family. Our toddler Will is disabled and suffers from a form of Leukodystrophy; he requires 1:1 care at home. 

Being a mom of a blended family is full of fun, adventure, and…in reality, it’s mostly organized chaos. It had been three years since our last family photograph and we have a new addition to add to the gallery, Baby Will. This year our family photo was about capturing all of us together, without sweatpants or yoga pants! I won’t lie, it took me about three weeks to come up with clothing that everyone would wear. A couple of the kids are stuck in their groove of wearing Target cotton pants and my girls are most often found wearing breeches to the barn.

Photo Time:

I was able to find a cozy blanket from Target for a couple outside shots. The women’s footwear were Lucky Brand Basel Booties. My girls put on their booties and towered over me.
Let’s all take a moment to marinate in the glory (reality) of what it takes to pull of a family session like this: 2 different child contact schedules, hoping that someone doesn’t dye their hair blue with kool-aid at their other parent’s house, horseback riding schedules and caring for the beloved horse, Octavia. My adorable husband refuses to wear sweaters and I have a child who I hold 14 out of 16 hours of the day. The boys have various hobbies and my girls are avid dressage enthusiasts.
We live in a small house in Maine, it’s packed full of kids, stuff, and two dogs. The best room for a photo session is blocked by the Christmas tree. I agonized over how I would talk the boys into nice sweaters and JEANS. Then, I came to the last minute detail of THE VENUE. A family friend had offered to do our session for us and I had incorrectly assumed that she had an indoor setup in her barn. Well, she does, but it isn’t heated in the winter. In a six-week block, we had one opportunity that all the kids would be together for a brief window of time. We had 8am-10:30am on a Saturday morning, that’s it! Then it was off to basketball, followed by a swim meet, then a kid headed to New Hampshire for a wrestling match. The date and time could not move because if it snowed or someone got sick, we were going to have to postpone. The day before the photo shoot, my friend offered up her living room for our session. I was thrilled because she has a photographers dream of a living room. The natural light is phenomenal in her home. The best part, she lives around the corner. Winning!
The morning of the shoot my son got dressed in the previously approved wardrobe I had set out for him. He comes into the master bedroom and says, ‘there is no way I’m wearing these pants.’ My head implodes. I gave him the peaceful answer all my positive parenting friends recommend…no, I didn’t. I said, ‘man, you told me we were good to go with the pants. You’re wearing them! Do you realize how hard I worked on this?’ Yes, I was projecting, but good grief, wear them for an hour and shush your mouth! The others decided that my rage looked a lot like something they wanted no part in, so they did exactly as they were asked. After helping six kids with their camera-ready look, I had time for a power shower, but there was no time to wash and dry my own hair.
Complaining aside, I had the opportunity to help my 13-year-old with her makeup and my 15-year-old with her eye makeup and hair:
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Mia used my go-to quick blow out spray for her long blonde hair.  She used a few shades of my favorite, all-time go-to, eye make-up palette as well.
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Next, Liv used: Sephora foundation, applied with a Beauty Blender, and They’re Real! Mascara. She had been using a beauty blender, but didn’t know she was supposed to wet it first. We started off by cleaning the never cleansed Blender with the Blendercleanser, then we set their makeup with a primer that doubles as a finishing spray.

Photos were a success; everyone felt handsome/beautiful and the kids had a blast.