As a parent with a child of a chronic illness you find yourself on a journey. You often start with a healthy baby. Your child then starts to develop signs of being sick. If you are lucky the doctors can define the illness, if you are like most of us the doctors are baffled by the symptoms your child is showing.
As your child grows you find yourself researching and reading and going to doctors and trying to figure out what is wrong with your child. I will never forget those early years of chasing diagnosis and doctors and tests. Answering questions from Nicole about why she sees so many doctors.
When you finally get a diagnosis you start off relieved and then you transition to heart broken. Your fears are true, your child really has a chronic illness that will not go away. It won’t magically get better, it will be this way for the rest of her life.
Reminding yourself that this is a journey and that there will always be bumps along the way is very important.
The last month has been another detour on our journey. With me being hurt, Nicole has had to become the care provider. Growing up I was also the care provider and I never wanted my child to have to do this.
However, here we are… she is the one providing the care. She is processing through this and she is doing well, but I do see her struggling. We are doing everything we can to make sure her life resembles somewhat normal. Playing with friends and hanging out ensure her life stays the same.
This journey is exactly that, a journey. It isn’t the end, and there will be other bumps along the way. We all need to remember that this is our own personal journey and others have different journey’s, but this one is ours…
Most of you know that Nicole works 2 days a week at the barn. She mucks stalls, feeds horses, brings them in and out and gives them hay. She does all of this under the watchful eye of the barn owner who sees this as a huge investment in today’s teens!
What I am blown away by is this is a child who struggles to get up in the morning, yet every Sunday she is up by 6:45 and dressed and ready to go. She works outside in freezing cold, rain, heat and today ice. Because we live in the weird world of Illinois where it was subzero on Wednesday and 45 on Sunday. Which makes for very frozen ground and very icy footing!
She has boot covers that provide traction and she will wear those today as she takes horses out. Just for reference, I went yesterday to switch the blankets on my horse. I had to bring him into the barn to do this. He knew it was slick and he thought it was fun to push his Human around. My horse is 20 so he doesn’t move real fast, but some of those horses are big, scared, powerful, and well horses! She is going to slip and slide and probably fall today, yet there she is doing something that she loves more than anything.
When I was 14 I was thinking about babysitting, going to my youth group and participating in Bible Quiz Bowl. My daughter thinks about work, and getting her job done. I am so proud of this child who struggles every day with a chronic illness but puts her all into the job she is very proud to have
We’ve always said that Nicole views the world differently and that she will accomplish anything she sets her heart out to. This past weekend at Blast Nic worked her tail off she sorted sweatshirts, she sorted muffins and she sorted keys. All of these things are OK for a normal healthy kid but for a kid with POTS these can mean days of not being able to get out of bed.
While she was working and sorting and helping mom lead, someone asked how old she was. She told the person she was a freshman and the person answered, In college? Nope Nic replied in Highschool! This adult was blown away that this child was so put together and organized. I explained this is what happens when mom and dad run everything they get involved in!
Yesterday she was presented with challenging information from a friend. She has had similar information herself and in typical Nicole fashion she has a plan to tackle it! Of course also in Nicole fashion she had little empathy for her friend. (Yes she is my kid)
What I love most about her is she attacks every problem head on and with a calm head. She understands this is her hand in life but that it does not define who she is. She has a plan and she intends to stick to it!
Take a note from Nic’s book and when life get’s you down stand up straighter and attack it head on!
2018 started with a bang with us being in Florida for vacation. We have enjoyed so many amazing memories this year! Including mom going to Vegas for a weekend, and Nicole being involved in 2 musicals!
We bought a horse (I still can’t get over that!) and made the decision to pull Nic from school and allow her to attend online.
I can say that 2018 has flown by, and I still can’t believe that tomorrow we start 2019! This year has been one of ups and downs but by far way more ups than downs! We have been able to celebrate life with friends and even though we lost a few along the way (Sue Blackburn you will be so missed) God has really blessed our family!
I can honestly say that our family is really amazing and while we do have our struggles we have been able to do so many things!
The people God introduced us to this year really are amazing. From meeting Aria at Target, then finding out she attends our church to spending time with family in Michigan not once but Twice!! Plus all of the kids we have met and loved on through volleyball has been so amazing!
I can’t wait to see what 2019 has to hold for us, maybe another horse?? (Ok mom really wants her own lol) But I know that it will be just as exciting as 2018 was!
Here’s to another amazing year and to hoping that 2019 only brings you Joy!!
This past week is always a struggle. It marks the anniversary of my mom’s death. It is also the marker that for me means that Christmas can finally happen. My family knows that for me getting past December 14 is a milestone that comes and goes every year. Usually without much fanfare.
This past week I got a Facebook message from someone I have known for years. She has a beautiful voice and used to sing on stage at our church. I actually think about her often she was just one of those beautiful people who had a beautiful talent. She reached out to tell me she had been diagnosised with POTS and was scared and worried about that that could mean for her.
I can’t say that I was excited to get that message. However, knowing that doctors are starting to recognize the disease is a good sign. Hopefully it will mean people won’t go years without figuring out what is wrong.
While I am not excited that our circle has widened I am happy that I was able to help someone…
We have been doing so well, with Nic being home schooled we are seeing alot less ‘bad’ days and alot more good days! This has really allowed her to be involved in more things and be successful at all of them!
However, this weekend POTS showed up again like the monster it is! Saturday we took her and her friend to dinner in between the 2 shows. She was bouncing and talking really fast, I knew then that we were in for a fall. I was hoping she’d make it through to the end of the show, but that was not to be the case!
We dropped the girls back off at 6:45 and walked around down town naperville. At 8:05 (the show started at 8) I got a call from Nicole saying she was running a fever and was very dizzy. She told me that she was fighting to stay awake and wasn’t able to even sit up.
We rushed back to the theater to find her laying on the floor. She missed the 2nd show on Saturday and the final show on Sunday.
It get’s easy to forget that she has this disease!! This weekend we were reminded! The big lesson from this weekend is simply that we aren’t letting POTS win! We have to make adjustments but we are not letting this disease win!
When I hear the word strong I think of the body builders and how strong they must be to lift the weight they are lifting! When I hear the word strength I think of how strong something must be to do that particular task. It could be the strength of a horse to pull a plow or that of a rope to pull a car. However most of us don’t think of the word strength when it comes to a person.
We do often say that person is so strong to deal with that illness or issue but I don’t think we really know what it means for a person to be strong! When I look at Nicole I see strength. Not because she is physically strong, although she is! But because of her mental strength. Her ability to fight through fatigue that most of us can only imagine blows me away.
This past week we had a busy schedule. Nicole worked at the barn 3 days, rode 6 days, and on Thursday we visited the Joliet prison (If you want to hear about our experiences let me know). That meant several days of pushing her body physically and mentally. By Saturday she was exhausted but she still got up at 7 with us and coached volleyball, and then visited a friends haunted woods Saturday night. By Sunday, I wasn’t sure she was going to be standing however she got up, went to work and then rehearsal. She was in bed by 6.
Not once did she complain that she was too tired or that she was going to fall over even though I knew that was what she was feeling. That’s strength, pushing yourself past what is possible and then going further. It also means knowing when to take a rest and today is her rest day. She’ll sleep until she gets up and she’ll have a rest day. This is OK, it’s ok to be strong and then have a rest day. For me I’ll be working but I will also be in awe of this person who struggles with so much but pushes herself farther than most adults!
A friend’s son was recently diagnosised with Bronchiectasis. This journey for them took several years and at least 1 doctor telling them it was all in his head. We didn’t get the ‘it’s all in your head’ talk.. however I know many many families who have.
I’ve also questioned the symptoms myself, is this really happening?? I don’t understand why this is the go to for so many doctors. We can’t figure this out, it must be all in your head. I know sometimes it is, sometimes it is in your head.
Funny side story 🙂 Our dog threw up on the carpet today. Nicole came up to tell me and she was pale! She said, mom I can’t pick it up today. I told her it was fine I’d get it. She was frustrated because she couldn’t clean it up without gagging. I told her that sometimes we get in our heads and we can’t get out.
I know there are times when anxiety has gotten the best of me and I have not done something because I simply can’t go.
Let’s try to understand why docs go this way.. and educate them in a good way that just because they can’t figure it out, doesn’t mean it’s not there.
Its Friday and our awesome horse Duke or Lil Duke as he is known at the barn is doing so well. He still has a long way to go but he finally has a buddy! Glitz is another paint and they look so similar. I mean who doesn’t love this horse?? Last night he did so well and he has the best facial expressions you can really read what he is thinking and most of the time, it is “what do you want now” lol… anyway horse therapy has been the best for Nic and she really pushes to do everything she can to meet this amazing horses needs! So let me leave you with this super cute picture and imagine him saying “please stop taking my picture!”