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I know this is what we raise our children for – for them to leave the nest and fly on their own — I just never knew it was going to be so hard when it actually happened.

My son, Nick, who is almost 18, started a Monday, Wednesday, Friday routine of prophylaxis when he was 1. He had a port implanted after a spontaneous epidural bleed. It was an extremely difficult time for us but once we got settled in our routine, looking back, it was the best thing that could have happened. For the most part, it allowed him to do most normal boy “stuff” without too many concerns. It wasn’t always as easy as it sounds, but overall, prophylaxis was the best thing that happened for us.

After having a port for 7 years, the time finally came to make the transition to peripheral infusions.  I felt like we had settled into a great routine and comfort level with the port, but Nick was ready so we made the transition.

As you know, the last several years have brought about numerous new treatment options. From longer lasting products and/or subcutaneous injections and lots of progress with gene therapy.  Nick is now old enough to be able to participate in the discussions regarding his treatment. All the while I thought he wasn’t paying too much attention at his clinic appointments. But after one of his recent appointments he asked – why am I not using a longer lasting product?

Since this a judgement free mom zone – I’ll admit – I am still doing his infusions. He knows how to do it and could if he had to, but… I’m hoping there are lots of moms reading this that understand without any further explanation! We had started working on his independence more lately as we prepare for him to leave for college later this year. (YIKES!) That’s a mom’s blog for another day!

So we thought, if he’s really interested in making this transition, now is probably the time to try it. We can see how it works before he leaves, and he can have time to become comfortable with his own infusions. A month ago we started the change.

I’m thrilled for him. So far things are going great, and I think it will be a wonderful change for him. What I wasn’t prepared for was my reaction to the change. While I am super happy for him and think it’s a great change – I wasn’t prepared for my emotions when I did his last IV infusion.  I actually got teary eyed. I tried to downplay it and laugh it off, but I was actually sad about it.  How is it possible that I can be sad about something that I really disliked doing? And more than once said “I really don’t feel like doing this today”.

Nick said, “Mom – aren’t you happy for me?”  I said, “YES of course I am.” But I realized I was sad because I feel like it’s the end of an era for us. For 17 years, he and I did infusions at least three times a week. It was “our thing” even if so many times I hated it.

I keep reminding myself that as much as I want to – I can’t go to college with him. And as difficult as this change is for me, it is what is best for him and all a part of his independence. I know this is what we raise our children for – for them to leave the nest and fly on their own. I just never knew it was going to be so hard when it actually happened.

Tracy, her husband, Lance, and son, Nick, live in Virginia.


*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. 

 


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