A Different Boat

This time last year, I was confounded by my lack of Christmas spirit.  I love this holiday.  I play "elf" on Christmas morning and hand out presents to everyone.  I can't wait to decorate our house for Christmas. I'm excited to cook a big holiday meal for family and friends.  I look forward to each Sunday in Advent.  I love buying presents for people. I listen to Christmas music on the radio as soon as they start playing it.  I can't wait to spend time together with my family.  I genuinely love Christmas. After spending the last year pondering my change in attitude, I realized we had a couple really, really tough Decembers in a row.  Christmas 2010 we were in the last stages of a month long miscarriage.  We were really struggling and grieving that loss.  I honestly didn't feel like celebrating Jesus' birth after feeling like I was robbed of my baby.  Then, leading up to Christmas 2011 I was feeling hopeful, excited for our baby w...

I haven't updated in much too long, but in some sense, no news is good news. Life gets into a routine and even though I had no idea therapies and doctor's appointments would be such a significant part of our routine, it is our status quo. I do have a few new things to share and pictures I want to post, but tonight I'm much too tired to go into all of that. I need to get to bed as we've had a busy weekend and are sharing our journey with Wesley so far with our church in the morning. We love our church so much and are driving an hour up there every Sunday after we moved because they are our family. So in some sense, sharing with them seems right and natural but tonight I'm finding myself quite nervous. I want to give an honest, vulnerable portrayal of our journey but at the same time, I want to make sure we are encouraging and uplifting rather than inciting fear or confusion. Prayers are greatly appreciated that the Holy Spirit would guide our words. More posts w...

A friend from Anchor Center recently sent me a link to this blog on the importance of special needs parents taking care of themselves (although I would argue this applies to all parents at some level). One of the most sombering parts of this blog is the statistic, "40 to 70 percent of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression – Family Caregiver Alliance, National Center on Caregiving." Looking around at my caregiver friends and the parents in the waiting rooms at Children's I can start to see that. Everyone displays this facade of strength and stability but when you look harder, you can see the cracks. You have to look strong and act strong to make it through each day. Being strong is a requirement for existing in this high stress environment but strength only goes so far. You start to see the cracks when a mom who seems like she has everythin...

Warning: potentially offensive, somewhat rant-y post to follow Lately it seems like a lot of my Facebook friends (aka some good friends and other people I had one class with in college or know in an equally distant sort of way) have been posting about "natural medicine" in two district ways. It seems to either be a miracle cure for all that ails us or an evil medical conspiracy that has caused all that ails us. In what I feel is mostly out of character for me, I keep finding myself angry in response to their posts. Despite being skeptical, I try to be open to most ideas and willing to educate myself on things I don't know much about. I've gone to chiropractors, taken Wes to acupuncture, bought organic produce, and read and read and read about alternative medicine. So why do I feel such instinctual animosity towards such good intentioned posts? Evil Causes: All of this fear about the dangers of vaccines, GMO foods, cleaning chemicals, microwaves, antibiotics, an...

Sometimes it's the little things that keep you going day to day. You search desperately for something big and wonderful to happen and when it doesn't you have a choice to make. Either dwell in the sadness or look closer at the fine details to see the little wonderful things that are happening. I was told when Wes was roughly six months old that most kids who can sit independently by age two can walk by five. At the time, I naively thought that would be no problem. He was gaining stability and getting closer to being able to sit all the time so I was sure within another year and a half he'd be sitting. I was encouraged that this meant Wes would most likely learn to walk and his physical disability wouldn't be that significant. Well, fast forward 14 months and he's still not sitting independently. And as much as I want to deny it, it drives me crazy that he can't sit. I imagine all the situations that would instantly be made easier by him sitting independently a...

Several months ago I booked a flight to go see my new nephew. Well from that time until now, I've been debating whether to bring Wes with me or leave him home with daddy and grandma and grandpa. Being my usual procrastinator self, I was still debating until the night before I left. I was plagued by indecision and torturing myself trying to make the "right" choice. I tormented myself over the pros and cons determined that there was a right and a wrong choice. Bringing him and meant having to deal with the complexities of not only traveling with a toddler but also with the medical supplies and difficulties of carrying a non-walking, non-sitting 1 1/2 year old through the airport, or do I leave him home and miss him horribly yet have an infinitely easier trip? So I weighed the pros and cons, called friends and family for advice, debated in my head for weeks (and somewhat embarrassingly cried about it). Ultimately I came up with a policy I hope to follow for situations like ...

As we face a new stage in our lives (new house, new job for Colby, new training for me, etc.), I guess I'm feeling a little nostalgic. I've spent a couple nights so far this week looking back at old pictures from the past couple years. It seems like we've had Wes forever and yet like the last two years have just flown by. This time two years ago we were anxiously waiting for our appointment to find out if we were having a boy or a girl not even imagining the journey we would take with our precious baby. Looking back, it's incredible how far Wes has come. He is growing up. So, I thought I would share some of my nostalgic journey through our photos with you all. Our baby boy Our plan for Wesley's birth 36 weeks pregnant Wesley's first photo (and my first way to see him) Spending time with my 1 day old boy Christmas Eve - my first time holding him His first bath Going home!!! So attentive Hanging out with ...

Lately I've been reading a lot of blogs and prayer sites done by other families whose children are sick or disabled. Besides being heartbreaking to read their struggles, it is a reminder of the frailty of our human existence. Despite thousands of years of research and advancements, there is still so much sickness and hurting. Now I am absolutely grateful for the advancement that have been made (without which Wes never would have survived) and I am hopeful for future advancements which will help him develop and progress, but ultimately we can only do so much. No matter how technologically or medically advanced we become, bad, heartbreaking things will still happen (to good people and bad people alike). Moments like this make me so grateful for the hope of an eternity in Heaven. I can't imagine facing the difficulties and despair of sickness and disabilities and hurting with no hope of it ending. It seems that here on Earth it is never ending. When one person gets better, anot...

After 18 months of driving 120 miles round trip to Children's Hospital several times a week, we have decided to move closer to Denver. It's incredibly sad to move away from the mountains and the community we love, but there are some unsolvable things about living here. Wesley needs to get regular occupational therapy which he can't get at home in this rural community. Sadly, there is not a single pediatric occupational therapist who will travel up here. It's also become more evident that our 5 level split-level house is not practical for Wesley in the long run. Although we are hopeful that he will learn to walk and climb stairs, it is going to be a much longer and more difficult journey than we originally realized and constantly carrying him up and down stairs for most daily activities will become increasingly difficult as he gets bigger. Also while the schools here are filled with wonderful, compassionate people, they simply don't have the same resources as school...

I have so many thoughts and things to share it's hard to know where to start...   We got a mini-Christmas for Wes this week at his physical therapy appointment. Almost 3 months ago we ordered a few adaptive equipment items to help Wes progress and to help us take care of him. Well, after a long process of obtaining letters of medical necessity and waiting on insurance, we got them (yay!). One of the wonderful things about Wes being on Medicaid, is this equipment is covered 100% (double yay!). So we traveled home from Children's with a new medical stroller (kid kart) which also works as a chair at home, a bath chair (since he just won't fit in the infant tub anymore and isn't sitting independently yet), and a stander. I have mixed feelings about these items. While I am excited to have the tools appropriate to help Wes, there is some reminder of the loss of normalcy while seeing him using the equipment. He looks adorable, as usual :) , and his positioning is so mu...

I have so many overwhelming emotions related to our overnight hospital stay with Wes and I'm still not ready to unpack all of that. So, here are the facts. The EEG was anything but definitive. It showed a lot of abnormal activity including lots of non-seizure spikes in electrical activity. This means they didn't catch any seizures on the EEG, but it is still very likely that either he is having, or soon will start having seizures. The neurologists recommended starting Wes on a seizure medication called Onfi which should prevent any seizures from happening and should help relax some of his abnormal muscle tone as well. Seizure meds are scary because they are designed to mess with brain chemistry even though our understanding of the brain is fairly primitive still. This medication, although highly addictive (which majorly scares me), is supposed to have fewer side effects than most. We're starting with a low dose given at bedtime,since the main side effect is drowsiness, ...

Do you want the good news or the bad news first?   Good news: Wesley has graduated from wearing his helmet during the day! He's on nighttime only helmet wearing for the next month and then will hopefully graduate all together. It's so nice to have his sweet little head to rub and kiss again. He seems happy to have his head free and his head control seems much better now that the weight of the helmet is off. I'm glad he won't have to wear it all summer in the heat and get all sweaty and smelly. His head looks wonderful by the way! The front is definitely still pointy (although not as bad) but the back is actually symmetrical. I don't plan on giving him a buzz cut anytime soon because his head is still kinda lumpy, but it doesn't look like a triangle from above anymore! When he officially graduates I'll post sone before and after shots.   Bad news: In the past week, Wesley's physical therapist and his ophthalmologist both, without any prompti...

On Monday I attended a new group, CP Connections, for parents of kids with cerebral palsy. It was pretty intimidating because the other parents' kids are aged 6-26, compared to Anchor Center where our kids are all under 3. I am looking forward to their wisdom as they have been navigating life parenting a kid with CP for longer but seeing all the possibilities for our future is pretty overwhelming. They chose an amazing quote as their motto: "You don't know how strong you are until being strong is the only choice you have." I love this quote! People keep telling me how strong I am and I always think that most people, if put in my shoes, would exhibit the same strength. It's not that I'm someone special, it's that Wesley needs me to be strong so I am. I have heard countless times, "God only gives special children to special parents." I know people who are encouraged enormously by this but I have a different theory. God didn't choose us to par...

First of all, THANK YOU THANK YOU THANK YOU!!! to everyone who bought from our Pampered Chef fundraiser and donated via PayPal. Together we raised $3,227!!!! We have been surprised by how expensive therapies and medical costs can be but are completely blown away by the amount of support we received from you all. We are completely humbled and absolutely blessed that you all love our little boy so much.   The next two weeks are Spring Break from Anchor Center. As both a student and a teacher I looked forward to breaks like a little kid looks forward to Christmas. Well as a parent I am sad to have spring break. Not that I mind spending time at home with Wesley, but I miss the things I learn while we're at Anchor and seeing my mommy friends there. In place of our normal Anchor Center time this week we have two important appointments. Yesterday we went back to the neurosurgeon to evaluate Wesley's head growth, shape, and development. They agreed that the helmet has definite...

In my quest for books to support me in this journey I've ended up on, I found a book called Same Lake, Different Boat . It is written for Christians (particularly church leadership) to help them learn to minister to people with disabilities and their families. Although I am not necessarily the intended audience for this book, it has more profoundly impacted me than all the books I've read and I'm only on chapter 4 (I read the first chapter 3 times it was so good). I desperately want to plagiarize the first chapter here because I know I won't summarize it as well as she wrote it. Perhaps it won't be as profound of a revelation to you as it was to me (maybe it was just God speaking to me at that moment), but if it is, please buy the book (or read the first chapter on Amazon) to get the full impact. Since Wesley was born, I've had these horrible conflicting emotions about disability. On one hand seems to be the perspective that disabilities are all bad and someo...

I remember sitting in our Sunday school class at our church in Illinois for a lesson on community. I was struck by the idea that by not asking for help when we need it, we are robbing others of the opportunity to bless us and are impeding the building of a community. It sounds to simple and intuitive writing it out now, but at the time it rocked my views and challenged me to be less self reliant. Growing up in a very individualistic society, we learn to be independent and generally look down on those who ask for help (ie government handouts). Somehow, I don't think that's the kind of community Christ encouraged us to establish with each other. I think most of us are more than willing to (perhaps are even excited to) help others we know are in need. Asking for, and receiving, help always seems harder than giving it. It puts you in a vulnerable place, allowing others to see your weaknesses and depending on them rather than yourself. It is extremely humbling.   So, in an att...