What's a Mom to do?

When you have a young "adult," there are certain things you have to let go.  Prophy is one thing.  My 19 year old, Julian, believes prophy is not necessary since he always infuses when he feels something coming on.  I finally had to let that go and accept it.

He asked me to specifically buy him a leather Medic Alert cuff.  I did.  And where does it live, next to his computer.  This is one that I'm not letting go of.  I keep telling him (without too much judgment) that I worry about the other drivers on the road.  One wreck when he has no factor in his system....I don't even want to imagine.

Last Thursday he came home with both knees bothering him.  He said he was going upstairs to treat.  I went to check on him and he looked at me and said, "I don't have any factor."  I can't believe I didn't go ballistic.  Never mind that since December I was dropping hints to remind him that he needed to order before insurance changed.  And here he was without a drop.

We called his pharmacist and she stayed until 8 pm trying to get his factor through.  He got his bleed doses the next day.  I explained to him all of the steps that were involved to get his factor (with new insurance changes) and he actually teared up and said, "Tina is freaking awesome."

I don't think running out of factor will happen again because he saw that the worst case scenario was having to go to the emergency room.

Sometimes you have to let your kids made their own decisions and suffer the consequences.  Some may think I was pretty harsh because he could have had a major bleed.  It would have meant a trip to the emergency room, but this was one that he had to learn on his own.

What can we do for our teens and young adults?

1. They need to order their own factor.  Some pharmacists use email and texts if you child is busy at school.  Encourage them to take responsibility.

2.  They need to keep an insurance card with them.  Explain copays and deductibles.  You'll have to do it over and over, but our kids need to know about insurance now.  It's not like when we learned about insurance as adults or even when our clotting challenged kids came into the world.

3.  When they are at the doctor's office, they need to fill out their own forms.  Have them be responsible for filling out documentation.

4.  Make sure they know what product they take and their dosage (Amicar included).

5.  Do they know the difference between their homecare and pharmaceutical companies?

6.  Make sure they have the names and numbers for their HTC, homecare and nurses in their phones.

I am sure there are many other things, but these are some of the basics.

Transitioning is tough, but we need to help our kids be ready to take control of the health.

What other ideas do you have for transitioning?

A Wave of Gratitude

A special thanks to my husband for this beautiful post.

This season is very special in our family for a number of reasons. We look forward to time off work, to being together, to play in the snow. It is a very special time when we give thanks for the incredible gifts that the year has offered each of us. We can’t help but feel incredibly blessed.

Today, I was made aware of a special blessing. A year ago, my youngest son looked at me and assured me that he was ready to step out of his wheelchair and go to school on his own two feet. While he walked with a noticeable limp, he has yet to sit in that wheelchair again. It has been an amazing journey to be an eyewitness to his progress.

Flashback to Christmas 2013, two years ago. Caeleb was in the hospital struggling through a very difficult bleed. While it was awful to sit in a hospital room during the holiday, I am very grateful for my wife for making it a holiday to remember; complete with a tree (it was tiny), a projector to watch our holiday favorites, and presents from Santa. The goal was to preserve and celebrate our family traditions, in spite of where we might be.

All of these memories hit me as I took my son to the Carrie Tingley Rehabilitation Hospital to begin physical therapy. We had not done physical therapy in a year. This time would be different. There are no longer issues regarding how much weight he could put on his leg; we would truly be developing muscles that had suffered as a result of being in a wheelchair. This was a different ball game.

When I took Caeleb into the facility, I was overcome with emotions. I remembered that the last time that I brought him into the building, he was in a wheelchair. What a difference a year makes. He and I practically ran into the center as we played one of those daddy and son racing games. We play those well.

As a wall of emotions seemed to pour over me, I saw our physical therapist. To my surprise, I started to break down in tears at her reaction to Caeleb’ s progress. The impossible truly became the possible. My son, once confined to a wheelchair, walked without any assistance. I took this moment as a miracle.

This Christmas, I really didn’t need a present under a tree, because the gift of gratitude was so incredibly powerful that I wanted for nothing. I could only respond over and over again how blessed my family is this year. We are all healthy. We all slept in our beds without hospital monitors beeping in the middle of the night. My son went outside and played in the snow.

This is what I know, the situation in which we currently find ourselves can change at the drop of a hat. What matters is what we share in the moment, knowing that with each passing day life can change on a dime. This year, I am grateful for Caeleb’s health. Last year, I was grateful that we left the wheelchair. The year before that, I was grateful for being together, even in the worst of circumstances; and the year before that I was grateful…

I Wonder...

Yesterday was WorldAIDS Day.  It is a day set apart to remember those who are living with HIV.

During the late 70's and early 80's, "The CDC report provided strong evidence that AIDS wasspread by blood. Altogether, almost 5000 hemophiliacs were to become infectedwith HIV before concentrates were rendered safe, and more than 4000 of the estimated10,000 hemophiliacs in the US would eventually die of AIDS." 

Every time I read that statistic my heart hurts for all of the people affected…the individuals that passed away and their loved ones.

My brother was born in 1962.  When the AIDS epidemic hit the hemophilia population he would have been about 18 years old.  I often wonder what his life would have been like.

Would he have been infected and already passed away?

Would he have been infected and still be here?

If he was still here, would he have been an active member of the bleeding disorder community?

What would he have taught my sons?

How would my parents have handled it all?

There are so many questions I have.  At the top of my list would be a question to my mom…"Why didn't you tell me?"

I don't think it would have mattered if I had known about hemophilia or not because I wanted to have children.  It may have been best that I didn't know so that I wasn't afraid of what "might" happen.  I enjoyed being pregnant with both of my sons.

All I can say is that I am a blessed woman to have two amazing sons.  And I am filled with gratitude that their factor products were not compromised. 

And for those who were victim to the tainted blood supply…my heart will always be with you.

I will never forget.

To the Newly Diagnosed Parent

Last week I had the privilege of talking to a mom with a newly diagnosed baby boy with hemophilia.  Hearing her pain, grief and devastation over the phone was heart wrenching.  I wanted to reach through the line and give her a hug to reassure her that things would be okay.  Our conversation brought back those memories of what it was like when both Julian and Caeleb were diagnosed.

"What did I do wrong?"

"Where did this come from?"

"Will he survive?"

"What won't he be able to do?"

"Will I know when the first bleed happens?"

"Am I going to always be afraid?"

These are some of the questions that raced through my mind when Julian (now 19) was newly diagnosed.  I had no idea what hemophilia meant and could not grasp the reality of what seemed to be this huge "thing" in my life.  I almost forgot to enjoy my beautiful baby boy.

You are not alone.

When you are newly diagnosed I think one of the hardest things to do is remember to love your child in the moment.  Sometimes you can only think about life in days, hours, moments and even breaths.

One thing never changes…the love you have for your child.

You will figure out the rest…one breath at a time.

One Year Ago

One year ago yesterday (October 17th) Caeleb had his 6th port placed.  It has been the best port he has ever had.  His daily infusions are going well, his inhibitor is in the process of being tolerized and the best news is that he has not been in the hospital since then.

Life has been good.

Who knew that almost a year later I would give a TEDxABQ talk on living with chronic illness and holding on to hope!

It was one of the most difficult and rewarding experiences of my life.  I had always hoped that one day I would have an "idea worth spreading" and didn't realize that living with hemophilia would place this talk on my heart.

The realization I had while working on this talk was that my message is not just about hemophilia, it's about living with chronic illness.  Old, young, rare disease or one more common than others, being the caregiver and the one affected.

When you are a caregiver your life often centers around the other person's illness.  You are put on hold and finding your way back to a 'normal' place is difficult.

When you are the person with a chronic illness you often think, "How can I go on?  Will I ever get better?  I just want to live a 'normal' life."  You have to find the best in every day, sometimes every moment, and keep hope alive so that you can get to the "other side" of the bad days.

I want to live a life filled with passion and purpose and I think it's "such a time like this" for me to spread that message wherever I am able.  Hemophilia is yucky and painful at times and I hope my sons are learning that it is part of who they are.  Not all of who they are, just part.

I love them the way they are and I wouldn't change a thing.  They have taught me so much and I am a better person because of the struggles.  It sure looks like having this bleeding disorder has already made my 19 and 9 year old sons more compassionate than I ever dreamed possible.

Keeping hope alive while having a chronic illness is not easy.  You can let the illness get the best of you but the important thing is to move forward and give your illness the best you have to offer.  A chronic illness can destroy a lot of things but holding on to what is important in your heart and soul is something that can't be taken away.

During some of the rougher seasons of living with hemophilia, especially with Caeleb, I felt like life was crashing down around me. Fighting my way back to finding hope was some of the hardest times I have ever experienced.  Deciding that despair and hopelessness were no longer in my vocabulary was life changing.

Won't you join me?

Let's all become prisoners of hope!