So here’s the thing... this photo was taken the week I got sick.
If I knew then what I know now I wouldn't have believed that 2 years later, I'd still be sick.
If I knew than what I know now I would not have thought it possible to endure this journey.
But I have survived it,and I will be given the strength I need to keep on persevering for as long as it takes to finally beat it.
As a family, we have learned the importance of taking this journey one moment at a time – the grace, strength and courage we need to persevere are not given ahead of time for the worries of tomorrow, but they are gifted to us as the moment and need arises.
And even though we did not choose to have this disease prey upon us, we can choose how we respond to it. While it is a nightmare to endure, we do not have to be victims of it. Instead we can choose to see God in it and TRUST Him through it.
When we choose to TRUST God in the middle of the darkness, than we are empowered to live from a position of victory.
Avery is the baby of our family. She’s my baby, my last baby, the baby I was in no hurry to have grow up – I wanted to savor every precious moment and LD has taken most of my memories from me. The reality is that I’ve missed out on a whole lot of living in the past 2 years. Life cannot be re-lived and I mourn for what I have lost.
When I became ill, Avery was a toddler who had justcelebrated her 3rd birthday. She still had a na-nu (soother) and a blankie.
And now she is a young lady of 5, who can swim without water wings, ride a two-wheeler and print the alphabet. She is feisty, determined and highly opinionated. She is also quick to laugh and has a wicked sense of humor.
Recently, she very matter of fact told me she’d like a strapless dress….and she prefers to be called the “Little Woman”
My mom took her shopping for a dress for her 5th birthday. After snubbing her nose at several of my mom’s selections, she honed in on one dress in particular. Mom was concerned that it was a little too old for her. But she was not to be deterred and insisted on trying it on. She emerged from the fitting room, twirling and prancing and exclaiming,
“This one is perfect...
I look like a woman.”
In June of this year, Avery graduated from preschool. It was a symbolic end to her 2 year preschool ‘career’ and a bitter sweet day for me. Last year I was so ill, I pretty much missed all of the end of the school year celebrations …never in a million years did I expect that this year I would still be fighting to re-gain my health. However, regardless of how I felt, I was incredibly determined to white knuckle my way through the celebrations this year. And I’m so glad I was able to do it because the following day my ability to get out of bed was once again taken from me. Little did we know that I would spend the next 8 weeks more or less completely bedridden.
So Avery’s graduation was a bittersweet day for me and for Avery, well, it wasn’t exactly the big hoorah celebration she expected either. In fact, she's mostly bitter about it.
The teachers really go out of their way to make graduation a special day. It is a ‘real’ graduation ceremony in every sense of the word, from the music to the graduates in full cap and gown, crossing the stage with pomp & circumstance to accept their diplomas. It’s cute and totally pulls at the heartstrings.
HOWEVER, Avery was highly unimpressed with the whole cap & gown regalia. And she was madder than hek that her teachers made her wear that "stupid cap and ugly gown" because it covered up her beloved woman dress… this was an indignity she endured very loudly and one from which she just could not recover from in time to savor the day.
Parker was 6 when I got sick.
At 6, he was the highly entertaining half time show at all of Taylor’s basketball games. A pint sized, corn rowed baller who’s amazing ability to consistently sink shot after shot from just about anywhere on the court left the crowds applauding in awe.
2 years later, he’s still at it. And has even developed his own fan base.
Aside from being NBA bound, Parker is trying to decide whether he will pursue a career as a masseuse or a fireman.
I think he’d be excellent at either. I can verify that he gives excellent hand massages and he definitely fits ‘fireman criteria’ – he’s strong, athletic, and handsome.
In addition to being very athletic, he is also creative, artistic and his laid back and kind nature makes him popular with his peers.
Yes, Parker is my sweet, sensitive and caring proverbial middle child. He is quiet, thoughtful and worries a lot about mom. He gives the most gentlest of hugs and often wants to know, “How are you feeling today, Mom?”
I am thankful for his vivid imagination...he often spends hours creating with lego or make believing that he is Indiana Jones, Luke Skywalker or Rocky Balboa.
I am glad that he can escape into his imagination as
he is easily burdened with worry about mom and as he puts it, " I feel sad because I've forgotten what its like to have a 'normal' mom."
Taylor has changed so much over the past 2 years.
He is rapidly leaving the ‘teenage’ part of him behind and in its place we see a Godly young man emerging. He is wise beyond his years, dependable, thoughtful, and incredibly articulate. He has a magnetic smile and over the years has developed his dad's unique sense of humor and comedic timing.
He recently pointed out to me that I still refer to him as a kid. He’s right, I do.My head knows that he’s not a kid anymore but in my heart, he’ll always be my kid.
And quite possibly, my kid will be leaving home in 2 short years.
Taylor is entering grade 11 this year and will celebrate his 16th birthday in September. He plans to enter the Air Force upon graduation and pursue a career in law as a criminal prosecutor. We think this is an excellent fit for him as he can talk circles around anyone.
Currently Taylor’s favorite past time is reminding me how many days are left until he gets his learners license. I recently decided that our family should “go green” by selling the van and using public transit. I think September is a good month to begin our new green lifestyle.
Taylor is still passionate about balling. He has recently rounded out that passion with a couple other pursuits. He’s learning to play guitar and has also taken up boxing. He now trains and boxes 3 days a week – I have definite qualms about this latest passion - especially given the fact that he broke his nose and finger playing basketball – which ironically is supposed to be a non contact sport.
I am thankful for the amazing friends that Taylor has. His buddies have been a great emotional and spiritual support to him throughout the past 2 years. I am continually amazed at the depth of character and strength that each of these young men possess. And I am incredibly grateful that God saw fit to bring this unique group of guys together.
Walter joined our family 15 months after I first became ill. Walter is a hamster and doesn’t really care. He just runs on his wheel and poops a lot. However, creepily enough, I often find him intently peering at me for long periods of time.
Taylor says that’s just because Walter was traumatized from the 3 month long attempt I made at potty training him. Don’t ask but in my defense, I was temporarily successful in this pursuit…until Walter rebelled.
Taylor says Walter is dumb. I don’t agree. I think he’s smart. And I think he knows a lot more than he lets on.
BTW, Walter is actually Taylor’s hamster.
My dear husband had just gone back to school part-time to take a whack at finishing his master’s degree in youth/family just shortly after I first became ill. He was only able to finish one course, before the demands of my illness took their toll and he was forced to withdraw from the program.
Just about everything about how our family used to function has changed.
However, some things never change. My husbands sense of humor is one of those. For that I am grateful. I don’t thing we’d survive the insanity of this journey if we couldn’t laugh about it. Graham keeps us laughing with his unconventional and sometimes irreverent way of looking at life.
Personally, I don’t know how he does all that he does and still manages to keep his humor in tact. Not only must he contend with the rigors and stress that are part of being in full-time ministry, but he has pretty much spent the past 2 years having to be both mom & dad to our kids, in addition to being a full time homemaker, caregiver and chauffeur.
I am blessed to have been given a life partner who chooses to stick out this journey with me and who is truly honoring his vow "to love and to honor, in sickness and in health"
It’s hard to believe I’ve survived 2 years of this agonizing journey called Lyme Disease. I suppose I have a love-hate relationship with it…I hate what it has taken from me but I love what I have learned from it.
Who is that buff, well-toned, free spirited gal in the photo?
It’s hard to remember what I was like pre-lyme. I fight hard not to let LD define me…but this is challenging to do because LD is with me every moment of every day. There is no escaping it.
2 years ago, I could multi-task; I could simultaneously talk on the phone, clean my house, and count to 10. I could dress up, put on make-up and live it up everyday. And I could actively and consistently participate in the lives of my kids.
2 years ago, I worked part time at our local community center. I miss my job and the folks I worked with. I was also a bona fide ‘gym rat’ …my day just wasn’t complete without getting in an 8km run and pumping some iron. Now, its considered a 'good' day if I have the stamina to walk around the block.
The reality is that I now face a host of of 'inabilities' everyday. There are a lot of things that I used to do that I have had to let go of.
The challenge for me is to find the 'ability' in my inabilities. Some days, that is a difficult choice to make. However, I have learned that with a few minor adjustments and a positive attitude, I can still enjoy the things I love.
I still love creating – I just do it on a much smaller scale. I still love to entertain – I just do it from the prone position on my couch. I still love to throw dinner parties – while they are no longer elaborately themed extravaganzas the food is way better now that my husband is the chef. I still love to sew – I just sew picc line covers instead of slipcovers.
Most importantly, I can still ACTIVELY love my kids.