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Hemophilia has taught me so many things… and for that, I am thankful

Aside from worrying over every little bump and bruise… Over the past eleven months hemophilia has taught me so much, and I have learned so much from it. Hemophilia has taught me to be understanding, thankful, strong, passionate, caring, accepting, patient, and appreciative.

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Truthfully, I feel like the list can go on and on.

It has taught me to enjoy the little things, and not to stress over irrelevant things. It has taught me to face challenges head on – and accept help from others. It has taught me to be both empathetic and understanding of others situations. It has taught me that everyone has a story; everyone has a battle they are fighting to win. It has taught me to be more compassionate and kind-hearted toward others (you never know what someone is going through). And it has certainly taught me that ‘normal’ isn’t all it’s cracked up to be!

Peter and I are undoubtedly better, stronger, people because we learned how to stay calm in the midst of all the complications, concerns, and questions regarding Ethan’s hemophilia.

As a mother, I am more aware than before hemophilia impacted our lives. While I still worry about Ethan, I have learned – and am still learning – an ideal balance between keeping a close eye on him while letting him be independent enough to explore and develop on his own. Although it still greatly worries me when Ethan tumbles and gets a bump or bruise, I have quickly learned the importance of staying calm and composed. Ethan feeds off my reaction; he can instantly sense my panic and anxiety… Because of this I have learned to remain calm for him. Sometimes I really feel as though I am a better parent because I can handle ‘emergency’ situations and scares with a calm and comforting attitude toward Ethan.

I am a better parent because I have learned to openly acknowledge my worries, fears, and concerns; I am willing to reach out for support when I need it most. I am so grateful to have such an amazingly supportive husband… As I have said many times before, I’m not sure if I would ever get through all of this if it weren’t for him!

Because of hemophilia, I learned to be less judgmental towards other parents and children. I appreciate children’s differences and embrace them for who they are – not for who others would like for them to be! I am also more patient in disciplining my little boy who occasionally throws a ‘typical toddler tantrum’.

This is normal, and I take it all in stride!

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Most of all, I am a better parent because hemophilia has taught me to be appreciative of every second of every single day. There is not a day that goes by that I don’t thank God for my amazing little boy.

Even through the suffering, I am thankful for the hope, courage, and strength that hemophilia brings to my family and how it has positively impacted our lives in so many ways. We continue to grow as individuals, as parents, and as a family. Hemophilia has taught us resiliency – and for that, I am a better parent.

Kerilynn

 

 

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I overanalyze things, I panic when I shouldn’t, and I downright worry.

As much as I try to maintain my strength and courage for Ethan and Peter, and as much as I appreciate people telling me “You’re such a strong Mom!”… Sometimes I’m not!

I overanalyze things, I panic when I shouldn’t, and I downright worry.

I worry that Ethan will have a bleed that I could have prevented. I worry about letting him explore his surroundings when he begins to walk. I worry about him falling down outside and scratching his hands and knees (although I know it is unavoidable). I worry that he may have a bleed that we won’t know how to handle. I worry that he may injure himself playing while Peter isn’t home, forcing me to react and make a decision on my own. I worry that we won’t be able to access his port when we need it most. I worry that he may experience pain and discomfort with an unknown bleed and he will not be able to communicate his needs to us. I worry that he will have an internal bleed that we have no idea about. I worry about what things will be like when he goes to school; how people will treat him and react. And yes, I worry about every single bumped head and bruised knee.

I worry.

I worry over every little possible thing a hemophilia Mom could worry about, and that’s normal. It’s completely normal to worry… I mean, what Mom doesn’t? It’s just that sometimes our ‘little things’ aren’t always so little.

The biggest thing, though, is not to let this take over our life. I quickly realized we have to live our life… Not sit around worrying about it!

In our eyes, Ethan is a very normal little boy. He does everything little boys his age like to do: he crawls everywhere, pulls himself up to everything, stands up on his own, walks along the furniture, plays with his toys, interacts with others, and explores his surroundings. Right now Ethan has no idea he is any different than any other eleven-month-old… And I absolutely love that about him!

I wish it could stay this way forever.

As parents we will fully encourage Ethan to try new things and develop new skills, always keeping in mind that he may be capable of more than we think. As I have said before, we understand it is essential to let him discover these things on his own and challenge himself accordingly. It’s healthy for him to explore his surroundings and set limits for himself. With time he will realize what he can and cannot do. As he grows and gets older, he will be able to make these decisions on his own.

And yes, I will still worry.

Not a day goes by that I don’t worry about Ethan’s hemophilia and how it will impede his life. I worry that I may not have taken the right actions to prevent a bleed from occurring or that I will make a wrong decision somewhere along our journey. But in this crazy, busy world nothing else matters except the fact that Ethan is alive and well… And right now he is doing absolutely amazing!

While I understand Ethan will encounter limitations and obstacles in his life, and he may endure more pain than others around him, he will undoubtedly grow up knowing his life is blessed with the love and support from both his parents.

Kerilynn

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Factor Days: Our Morning Routine

Although I haven’t had a chance to write a full blog entry in a while (I’ve been super busy trying to finish up my final three masters courses while spending as much time with Ethan as possible), I did create one more video to add to the final project I developed for one of my courses.

Despite the fact I planned on recording a video of Peter and I doing Ethan’s factor infusion for a while, it was a last minute decision this morning. I wanted to do the video before I presented my final project to my class, and only realized just before we infused Ethan that I wouldn’t get another chance to do it this week because of his appointments.

So, here is it! I apologize in advance for the pajamas (haha); we do Ethan’s infusion first thing in the morning before we get ready for our day…. It’s real life! 😉

It’s a video I created to give you an idea of what our morning routine looks like on days that Ethan receives his factor infusion through his port. Prior to the video clip I included some information and photos to help you better understand what we do to prepare everything we need for the infusion.

Oh, and be prepared to hear him whine and wiggle a little… Not that he minds the needle or being infused (because he really doesn’t), but more so because he doesn’t like being held down and restrained during the entire process. He is a typical little boy and wants to be on the move… ALL THE TIME!

I will write a longer entry soon… I promise! 🙂

Kerilynn

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Our Interview with NTV Evening News

On Sunday, March 8, 2015 Peter and I had the opportunity to do a sit-down interview with a freelance writer for NTV Evening News. Valerie contacted me after reading my blog and thought it would be a nice idea to do a story on Ethan’s journey – and his hemophilia – to raise awareness, since March is Hemophilia Awareness month. The interview was aired on NTV Evening News on Monday, March 16, 2015.

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Spreading the word to raise awareness

This past week was a pretty good one. Last weekend Peter and I had the opportunity to do an interview for NTV News, as well as one for The Compass Newspaper. After reading my blog, both writers approached me wanting to cover our story to help spread awareness of hemophilia. I was really nervous about it but so happy that we were given a chance to share our experiences with even more people!

It also reassured me that I am doing the right thing by sharing our story; obviously people are touched by it and people are interested in learning more… Just what I wanted!

Please tune in to the NTV Evening News on Monday, March 16th and pick up a copy of the Compass Newspaper on Tuesday, March 24th.

Monday morning, Ethan began favoring his left wrist. We noticed when he woke up he wouldn’t put any weight on it to crawl. Since he is such a busy, non-stop little boy that was an immediate red light!

We could feel a small lump in his wrist, so we knew he was having a bleed. We didn’t panic, though. We touched base with the hematologist and after asking us some routine questions he advised us to give Ethan an extra dose of Advate when we were doing his treatment that morning (Monday is one of the days we are scheduled to do Ethan’s infusion, anyway).

It was nice to see a perk of having his port – one phone call and we saved ourselves a trip to the emergency room to receive a treatment of factor. Having his port meant we were just able to treat it from home.

Treatment continued into Tuesday and again on Wednesday, but thankfully after the first treatment we could see an improvement! Although Ethan was clearly cautious about putting weight on his wrist, he started to move around with his hand in a closed fist later that day, and then finally he moved around a bit more with his fingers still curled in.

But, the fact that we could see improvement was a clear sign that the treatment was working and that the bleed was, in fact, getting better.

Aside from this very minor kink in our schedule, we had a great week!

Late Monday morning we made a visit to the infant care center that Ethan will be attending in May when Peter and I return to work. It was a great visit. I am familiar with the women that work there and I know they are absolutely amazing, but I was anxious to see how Ethan would react to the environment. It went really well! He really enjoyed it, loved being around the other kids, and was comfortable around the staff. Everything we wanted. It was great to be able to chat with them about Ethan’s condition, ask and answer some questions, and share some resources. We left with a sense of relief knowing they are comfortable working with him and that he will be in a great place with wonderful people. It will certainly make our transition back to work easier. While I originally returned to work in the fall, Peter took parental leave and Ethan was able to stay home with him full-time. And now that I am finishing up my Masters in Education, Ethan has the luxury of having BOTH of us home.

I think we’re all pretty spoiled after being able to spend so much time together over the last few months. It really has been great!

Wednesday we made a scheduled visit to Medical Day Care to have some blood work done to test Ethan for an inhibitor. As mentioned before, he will have blood work done every two weeks for the next little while to ensure he doesn’t develop an inhibitor to the Advate. Again, we were able to experience another perk of Ethan having a port – we were able to collect the blood sample from Ethan’s port rather than having to search for a vein in his little hand or arm. Since the hemophilia team wanted to assess our skills with accessing his port, I was the one who actually drew the blood sample because I would be giving Ethan his Advate right after. Everything went perfect! And thankfully Ethan’s inhibitor test came back negative again. Hopefully it stays that way – fingers crossed.

Kerilynn

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Please watch…

Here’s a video I created about our journey and experiences with Ethan’s hemophilia so far.

Please take a few minutes to watch it. Thanks! 🙂