To see the change in my daughter over these last 7 months is heartbreaking. Last November she was a vibrant, active, sassy, creative and independent teen ager. She was athletic and able to do an hour or more of yoga each day, she was working out with my oldest son doing his pre-military work out, she could flip a 117 pound tire up and down our driveway and was running a couple of miles a night. She had her own online business and was creating and designing new products to sell. School wasn’t her favorite thing around, but she was good at most subjects except math (she pretty much hates math). She housesat and babysat, she played with her siblings, she read all of the time, she hung out with friends, having sleep overs and watching movies. She loved to bake and was often in the kitchen. She had hopes and dreams of joining the military after school and then becoming a K9 officer and trainer. She was fiercely independent and highly motivated. To say she was strong-willed would be the understatement of the century. Paige was a pretty typical 16-year-old until November 4, 2016.
November 4, 2016 started out like most other days in our house. Dad got up and left for work, Bryce and Blake got up before everyone else so they could play video games for a little while and the girls and I slept through our alarm (several times). Once everyone was up, we started to load the van for the craft fair we had spent weeks preparing for. Each of the kids had spent HOURS making handmade gifts and crafts to sell at the craft fair, including Paige who had jewelry, headbands and crayon art to sell. Once all loaded up we made the nearly 2 hours drive to my parents house, where we would stay the night to make the early set up on Saturday a little easier. I dropped the boys off with my mom and sister and I took the girls to a friend for hair cuts. This is where Paige had her first ‘symptom’. While waiting her turn for her hair cut she was telling Mary about her plan to be a K9 cop, when she suddenly stopped mid sentence with severe chest pain. This was the start of her first ‘episode’ and the first of a couple of ER trips. I called 911 and Paige was transported to a local ER where we were told she just had a fast heart rate and to follow-up with her primary doctor. (You can read my full blog post on this episode and ER visit in an earlier post)
Little did we know that this wasn’t an isolated event, but instead the beginning of our journey with Lyme Disease. After several months, many specialists, what seemed like hundreds of tests and several misdiagnosis’, we finally got an accurate diagnosis of Lyme Disease, 5 co infections and 18 viruses. We are so thankful that we didn’t have to wait years for a diagnosis like so many, but my husband and I knew that our daughter was sick and we kept fighting for her until we found someone to treat ALL of her and listen to her. Even if this meant we had to drive 8 hours to see a doctor and pay for everything out of pocket.
Since November we have had to watch this terrible disease rob Paige of so much. To see my strong and independent daughter need help with things like eating, buttoning her jeans and counting out her pills is heartbreaking. She wants so badly to be a normal teenager, but nothing about what she is going through is normal. I watched her this past weekend at a birthday party; she really wanted to go and hang out with the other teens there and she tried to ‘fit in’. But when you have to go in and take medicine several times, and can’t be in the sun, when you stumble on your words and have a hard time putting a thought together and you can’t eat or drink what they are, you don’t feel normal. When your legs and hands are shaking so bad you can’t sit still and tremors make your arms fling about, you don’t feel normal. When they are talking about boyfriends, prom and going to the mall and you can barely get out of bed most days, you don’t feel normal. She tried to put on a happy face, but asked to leave early, it was just too much for her.
We are trying to find ways to give Paige back a little bit of what Lyme has stolen from her. We got her a new wheelchair that has large wheels, so she can wheel herself around and not rely on someone else. She now has super cute pull on pants so she can dress herself and not need help buttoning or zipping her pants. We have got books on tape so she can still ‘read’ on days her vision is weak or when she can’t hold a book. These are letting her do the little things that we all take for granted and they are helpful.
The hard part as the parent are the things we can’t give back to her. We can’t give her back her teen years, we can’t take away the pain, we can’t give her the energy she needs to function at a normal level. We can’t take her medicine for her, we can’t make her hands and legs work. It is hard to see her struggle with the most basic tasks everyday.
For me, the hardest part is seeing what this disease is doing to her personality. It has robbed her of her joy, of her dreams and is slowly taking away her sense of humor. A couple of months ago I was so thankful that Paige was still Paige. She was still sassy and funny. But everyday she looses a little bit of that. She cries more often, she gives up easily and she is moody. It is like Lyme is taking her away from me. Physically she is here, but mentally and emotionally she is shutting down. My fighter and strong-willed daughter is letting Lyme take over and this is so hard to watch.
I am praying daily that this is just another ‘symptom’ and that one day soon she will snap out of this funk and the ‘old Paige’ will be back. That she will get her fighting spirit back and throw all her sass back at Lyme. I try to be supportive and give her the space she needs, but I also want to go in and ‘fix’ everything. That is what we do as moms right? Make our kids life easier and fix what we can. But I can’t do that now. I can’t do anything but sit back and watch and Lyme steals my daughter away from me.
I hope that in a few weeks I can write another post sharing how symptoms have shifting again and that Paige has her spunk back. But until then we just try to do what we can to help her keep some of independence, support her on the bad days and pray hard that none of this is permanent.