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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I am finding myself in an interesting point in my life.  My oldest son is home for the summer and has finished up his first year of college. My youngest son is about to start his senior year of high school. So I’ve successfully launched one bird out of the nest and hope I can do it again! Some say that sending your first child off to college is the hardest; I am anticipating that the last child to leave the nest will be the most difficult for me because I will be closing a chapter in my life and whether or not I’m ready for it, life happens!

Looking back, I think I did some things really well in sending my son, Weston, off to school – but there were lots of areas to improve upon. I did the usual stuff in preparation for the big event – consulted friends and family, read books and blogs, and attended endless “getting you and your child ready for college” sessions. He signed up for ACT and SAT testing, filled out all those college applications and essays, and worked on scholarships. We purchased all the stuff he might need to set up a new household at school, and organized medication and clothes. I am really good at putting things on a list and checking them off. I soon discovered that there was much more in store – all those things that I would have absolutely no control over any longer!

brendan_collegeI was terrified to send my child with severe hemophilia out-of-state to college. Those words I preached were coming back to haunt me, “If you learn to self-infuse the whole world will be open to you, and if you don’t your world will only be as big as where I am.” I decided the best approach for the control freak in me was to write down all the things that would keep me up at night and do my best to put a plan in place to address how we would handle things in the event an issue would come up. It was an exhaustive list and I won’t bore you with all the details but here are key things we tackled:

  • Meet with the medical director at the university clinic.

    She appreciated meeting with us before an emergency, and even had a prepared list of questions for us. We brought lots of information for his file and provided a contact at the closest HTC if she had questions. She also made an introduction to the local hospital ER.

  • Let the campus police know that your child has a bleeding disorder and that he has medication stored in his dorm room.

    My fear was that if there was an accident, he would be rushed unconscious to the ER in a small town and they would have no factor available, meaning he would have to wait hours before some could be delivered – meanwhile a nice supply would just be sitting in his dorm room.

  • Register with the university disabilities office.

    We knew it would be much easier to work with professors if they knew of Weston’s bleeding disorder in advance.

  • Have your child use one of the apps that record infusions and will send you a text message when it is complete.

    This gave me peace of mind knowing he was doing infusions without me bugging him. It sure seems less intrusive for an app to ask, “Did you do your infusion today?” than having mom pester him.

  • Medic alert jewelry is a must and it is non-negotiable.

    This provides another layer of protection and comfort to me knowing that if something were to happen, first responders will know about his disorder.

  • Establish a communication protocol.

    We send texts back and forth every day or so and try to talk at least once per week. I wanted to give him space but I still need my “fix.”

It is important to note that life isn’t all about bleeding disorders and transitioning your child shouldn’t be either. Make sure your young adult can do everything he needs to do to thrive. Let them grocery shop, cook, clean, do their own laundry, make and attend doctor appointments on their own, fill prescriptions, get their vehicle serviced, pay bills, use credit cards, do their own banking and learn to write checks…. the list is endless. It is so easy to do this stuff for our kids we forget that our responsibility is to make sure they are fully functioning humans when they leave our homes. Most importantly it will provide them with the self-confidence they need to navigate the waters of life.

But the most important bit of advice – you have to be transitioned too! Let yourself experience all the emotions that you need to and surround yourself with supportive friends that will let you vent, cry, complain, and celebrate this most awesome occasion. I discovered that it is okay to cry at stoplights, watch them sleep, talk about my fears, and listen to his….yes, listen and not to try to solve. Make sure your children know that you are emotional because you will miss them not because you are worried they won’t be able to handle being away from home. When it is time to say your goodbyes – don’t do it in the dorm room, do it in a public place. It was more difficult for me to “act a fool” and grab on to my son’s leg in the middle of the student union!

We had a few rocky adventures this first year but we survived! Open lines of communication and minimizing surprises are on my list of improvements for next year. I may be a “Mom Interrupted” but I am still a mom and my kids will always be my kids. I am just learning to “mom” in different ways and I am trying really hard to embrace this change. And, oh – by the way the re-entry period (home for the summer) is not for the weak of heart – they have to move back in to your house of rules where there have been none for the last 9 months. I will save that adventure for another day!

The road to independence and adulthood often travels through a college town. For more information on resourcing about transitioning from high school, visit the HFA Resource Library’s Off to College toolkit.

Brendan lives with her husband Dallas, sons, Weston (19), and Garrett (16), in Texas.  Brendan is the Executive Director of Texas Central Hemophilia Association and Coalition Coordinator for the Texas Bleeding Disorders Coalition.


*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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