I feel a little bit foreign even being on this site. It took me a couple of minutes just to get logged in, forgetting so much of how I used to do this!
Why am I here?
Good question! I cannot believe the passage of time since the last time I wrote. But in the last year, more frequently than I ever imagined, people have asked me about the blog and why I wasn't updating anymore. I've felt the nudging to get back to it, but just didn't have what it took to get back on here.
But then Karen's mom happened.😄
A sweet message passed along to me, through my sister, gave me that encouragement to do it!
I know there are so many people who have invested much care and concern, love and prayers to our family. We could not have navigated these years without each one of you.
Where have I been?
Although we have not had major surgeries or illnesses, the last number of years has felt more intense than before. I'll share more as it feels right, I'm sure. But to try to summarize, here are some of developments in our family:
- Nate has been diagnosed with a lung disease. He has areas of bronchiectasis in one lung. This was discovered after years of different kinds of testing, and finally confirmed through lung CT and bronchoscopy. This means new daily 'at home' therapy with 7% saline nebulizer treatment and breathing/lung physiotherapy.
- Nate's heart function has been good!! 💗 His left sided ventricle (right ventricle) is still somewhat enlarged. He has had some very brief arrhythmias, but we've never been able to capture them. His mechanical heart valve is doing its job and the Warfarin (blood thinner) has been keeping him safe, even though those levels can fluctuate quite a bit and require frequent testing.
- Brady is now 11 and entering Grade 7, Nate is 9 and entering Grade 4. With Nate's growing awareness of some of the things that make him special and unique, comes some tough realizations that he has begun vocalizing. This has been difficult. To see him so unhappy and upset and saying he wished God didn't give him his special heart is hard. It isn't fair to him, that he has to do these hard things and Brady doesn't have to. Brady continues to be protective and keeps Nate safe wherever he is. Brady also will duke it out and have very typical brotherly interactions with him!! Nate gives it back just as well!!
- As for me, dealing with the emotions and day to day life of our Braveheart is consuming and mentally demanding. I stepped back from my position at work, and now work only a couple of hours a week on my own time. This has been a good move for me. Mornings were too unpredictable with health issues and therapy time, and this change has given me the flexibility I needed. We try to keep our life pretty simple and not filled with too many extra activities.
So, here I go again! This is just our story. With mess ups and fails along the way. Hopefully some fun laughs and victories, too!
Here's a snap from our summer holiday! Enjoying the incredible Niagara Falls!
