It's been well over a month since I last updated the blog. Honestly, I hadn't realized how long it had been until several people started asking about when I would be writing the next post. (I forget how many of you read our story and want to know about our precious Miss H.) I was, however, conscious that I hadn't been writing very much.
Ongoing Grief I'm going to blame a little of the procrastination around some ongoing grief I've been feeling. After writing the last gratitude post, I cried and consciously took a break from posting. I am grateful, but sometimes I'm still sad. March 22 was the year anniversary that we were told Hudsyn had significant delays...enough that we needed to start down the long, tough road of "acceptance." The one where we knew she would likely need full-time care going forward and the one where our lives were beyond changed. Where we had to start thinking about things like a handicapped license plate so we could park closer when running errands, a bathtub assistance chair so our backs could be saved from her increasing weight, a larger changing table, buying a house with two rooms on the same floor, shopping for a wheelchair...the list goes on and on. This right here is where the beginning of hope dies. Our first and only child has cerebral palsy. We have started to accept that she's beyond "catching up" and that she has significant special needs. This is also the point where I'm grateful every day that we have excellent health insurance.
The depth and duration of this grief is crazy. In getting pregnant and making the decision to have kids, we knew we'd be starting a new race. I just didn't think that race would be a lifelong marathon. One that tested my faith, my health, my endurance and my patience so completely as this one. A marathon that most days doesn't seem like it will ever end...or that we'll ever get a break. Because of this, sometimes the grief shows up in strange places.
The most recent incident I experienced at Target last week while picking out Hudsyn's dress with my sister. The dress was very cute. But it was seeing the matching Easter basket that created a sharp pain in my heart. I knew she couldn't hold it, let alone stand up and drag it around the yard hunting for eggs. It hurt. Again.
But, as is the case for most things in my life, God found a way to remind me of the real Truth. This time it was through the Easter message at church the next day. Rev. Chris talked about how Jesus had to go through so much - torture, ridicule, public embarrassment, etc. But on the other side of all that was a better, more perfect being. This relates to all of us...any of us who have ever faced difficulty. We almost always come out better, stronger and more resilient on the other side. We are always changed after a significant struggle. So instead of focusing on the grief, remember in that moment you face something horrible...something that causes you to want to stop breathing, that on the other side is a new you. A new you which was too confined in the previous life. This event had to happen in order for you (for us) to realize that all the potential you were hiding within before was actually being wasted.
While I don't feel like I'm quite where I need to be regarding that whole "stronger" part, I can say I've changed...completely. And I guess that's a start...at least one that gets me back to writing anyway. Now, let's get back to some happy thoughts. Ones that hopefully will put a smile on all of your faces.
Catching Up We've been having a lot of quality family time lately. My parents and sister came up for Easter which was great. Prior to that, here's a run-down of all the fun things we've been up to:
1. Family photo shoot. My mom hired a professional photographer off Groupon to get some new (and sorely needed) family photos. We decided to have the photo session outside at the WWI Memorial Park in Kansas City. It was a perfect sunny day, so they all turned out great.
It also happened to be National Cerebral Palsy Awareness day, so we wore green to honor our Miss H and the thousands of other special kiddos around the globe operating in bodies that aren't always easy to navigate.
My grandma, Hudsyn's Great Grandma Ann (and whom she was named after), joined us for a few four-generation shots. Those were my favorite. Her and Hudsyn have a very special bond and one that I'm so glad she gets to experience.
2. Dan left Angel's Rock Bar. It was time. He had been there for well over four years - a long time in the bar industry. He is now the head flair bartender at the KC Live District's newest hotspot, the Thrown. This was an idea created by Dan several years ago and after pitching it to the bosses, they finally got behind it this summer. He has a DJ, a barback and an entire stage from which to entertain. Be on the lookout for more antics on his Facebook page, or simply come down for a visit!
3. Getting back in shape. With Dan and I traveling to Hawaii this summer, it's definitely time to start pumping up for shorts and swim suit season. Oy, am I behind! I've started a new workout plan and am steadily losing weight. It's sometimes tough finding the time to get on the treadmill and work with the weights in our garage, but my sister (who has lost over 30 pounds) and a few other close friends help me stay motivated. I'll post pictures of the "after" only!;)
4. Hudsyn's Medical Updates. This month we took Hudsyn to see an Occupational Therapist to evaluate her feeding. She hadn't been on solid foods since the beginning of February because she had developed an aversion to them after we gave them constantly with her medicine. (Hey, I'd hate it, too...those pills are bitter!) So every time we'd try to give her solids, she'd gag and throw up. Her last neurology appointment had us wondering if we should get a G-Tube so this was the first step in doing that. Thankfully, the OT said she sounded great and after watching her eat 3-4 bites of peas in less than 5 minutes, she said the only reason we might explore a G-Tube would be to avoid feeding fatigue. Sometimes it does take her awhile to drink a bottle. However, Dan and I both feel that if we can avoid a surgery, we're going to...so we're pressing on and continuing to work with her. She's now up to 2 solid "snacks" a day via the Keto diet and it's going well. She has fallen in love with peas again, as well as, sweet potatoes.
Right after our OT appointment that day, we also had a more formal PT appointment at CMH. She was getting fitted for AFOs (Ankle/Foot Orthopedics). This is common for CP kids, but also kids who have issues walking. Her regular PT who visits our house once a week recommended we start working these into her daily schedule of therapy to help her legs and tendons to start forming correctly. Since she doesn't use them very much, they have become weak and a bit misshapen...we hope to correct that over time with these braces. The PT who casted her was super. She sang nursery songs while she slathered her legs with plaster and gauze to get the boot shape that would fit. Miss H loved listening to her and didn't cry once. We even got to pick out the color of the AFOs (purple, of course)!
The really exciting thing we've been noticing are some slight improvements in her vision, PT and responsiveness since starting some new vitamins. About a month ago, we began giving Hudsyn regular doses of Omega 3-6-9 (DHA), Vitamin D (1 drop per day), a multi-vitamin and Citicoline (500 mg per day). As a result, we've seen things like this:
We have one more ratio increase for the Keto diet to be in full swing for Hudsyn. I'm anxious to get it done, knowing that each increase has resulted in a decrease in her seizures. The last 3-4 weeks have been filled with more teething, but ultimately better eating and sleeping habits. I'm really crossing my fingers that after this next ratio increase we can get rid of seizures completely and get her off all anti-seizure meds.
5. Other fun stuff. Dan and I had a great Valentine's Day dinner at Pierpont's, and we've also had some fun nights out recently. We both attended the Big 12 opening game in Kansas City. After the first night, Dan (of course) worked his new bar, but I took off work to attend the rest of the games. Mom and dad offered to watch Hudsyn so I could have a bit of a break and let's face it, cut loose. I can't remember the last time I'd been downtown after dark. I really enjoyed watching all the basketball, as well as, hanging out with several friends and co-workers. And, although Missouri won, it was a pretty fun week.
Dan went skydiving for the first time with our brother-in-law Dayne for his birthday in March. Jackie (Dan's sister) also decided to jump out of the airplane at 11,000 ft. It was crazy but everyone had a great time. I had already been once before so felt like I could stay on the ground and keep Miss H company. Dan and Dayne both had videos taken, so the whole experience is on DVD should you want to stop by for a visit and watch sometime.
The last trip to my parents' house allowed us to go to Topeka and watch KU win their ticket into the championship game a few weekends ago. We spent time with Dan's family (Ben & Rachel) and of course my sister that night. It was weird wearing blue and red, but Dan and I hadn't been out in Topeka in a very long time so we didn't care. It was nice not having to worry about H while we went out.
(I'm again going to take the opportunity to express my gratitude here for my parents....THANK YOU for all you do.)
And a big thanks to all of you that sent your kind words and offered encouraging thoughts in helping me get back to writing. I have missed it...and hope to get back to a somewhat regular schedule again.
Let Spring Begin!