Sharing Our Stories

It's funny how life works.  You plan, try to do the "right" things the "right" way, and imagine your future...then life actually happens.

I never dreamed I would live in the desert of New Mexico as the wife of a pastor with two sons with severe hemophilia.

Not exactly my plan, but I am sure glad I have the life that I have :)  I love to see how God shows up and gives us the deepest desires of heart in ways we would never imagine.

One thing I know for sure is that when I have heard the stories of other mom's raising children with hemophilia, it has done nothing but inspire and encourage me over the years.  Those stories have always given me hope when I had nothing else to hold on to.

It is my prayer that my stories may do the same for someone else.

I have been invited to join the Hemophilia Federation of America's blogging team for "Infusing Love:  A Mom's View." 

Drop on by and read the stories of mom's who live with bleeding disorders. 

You never know when you will "hear" something that resonates with your own story.

I Should Have Known

"Christian's" knee has been swollen since January.  Bleed after bleed early this year and it just never seems to get back to a "normal" size.  He has needed to depend on his wheelchair more than I have liked, but when his classroom is at one end of the school and the cafeteria at the other, his knee can't take the long distances.

He's just seven years old.

He is in summer school four days a week and has been in the wheelchair and today he wanted to not use it.  His knee looked better than it has in several weeks, so we let him walk.  I had a little twinge of doubt deep down in my gut, and I didn't listen.

And then the 891 exchange came up on my caller id...it was the school...Christian fell right on his knee.

Here we go again, infusing every 4 hours, Cryo Cuff, RICE…..we know the drill but it sure would be nice for him (and all of us) to get a break.

We just do what we know how to do.

Terror

"Christian" has been fighting his fear of needles.  But when you are seven years old, nothing seems to make it "okay" that needles must be part of your life.  We typically de-access his port on Saturday and access on Sunday evenings.  Last Sunday night he did a fantastic job!  But tonight was another story.

My husband and I take turns and tonight was my turn.  Christian just did not cooperate.  My husband had to take over because I just could not get the needle in place.  Christian's blood pressure was through the roof, tears rolling down the side of his face, and as I was holding his arms down to his sides I looked into his eyes and I saw sheer terror.

Terror.

I cant' believe I am using that word, but there is not another word to describe what I saw in his eyes.  I've seen it before and it breaks my heart.  I can't stop and get emotional about it...I just have to focus on the task at hand, which is to infuse.  To get that factor into his body.  To do what is best for him.

And the worst part of tonight, as my husband was pushing the factor into Christian's body, was hearing his little voice between sobs with his little chest heaving saying, " I hate….hemophilia."

Mommy does too.

A Lesson Learned

Living with a bleeding disorder in this day and age, for the most part, can be managed well...if you plan well.  Bleeds never happen at a "good" time and last Friday was a perfect example.

"Christian" has been doing so well with no big bleeds and his knee (target joint) looks better than it has since January.  We traveled to Clovis, New Mexico to attend the New Mexico Annual Conference of the United Methodist Church's ordination service.  My husband was being ordained.  It is a moment we have worked together for as a family for several years and the time was here! 

We arrived Thursday evening and as he was going to bed Christian said, "My knee feels funny."  I infused an extra dose and tried to ignore what I knew deep down was a sign.  By noon on Friday, his knee was huge and I did not take enough factor to treat an acute bleed.   And I did not bring his pain medicine! 

At 5 pm I took him to the emergency room to get help with pain, we left and went to the service.  Before the service was over I had to leave and go back to the emergency room because his pain was crazy out of control.  And the hospital in Clovis only had 4 mgs of Novo Seven.

My husband was tied up and I was on my own and let me tell you something, if the mental beating up I was doing to myself could be seen, I would be black and blue.

"What was I thinking?  I have a child with a severe inhibitor and I am four hours from home (with nothing in between)!"  I even called my homecare to see if we could get factor on a plane and it did not work out.  It would have made more sense to go home.

Fortunately the ER was able to get his pain under control, gave me liquid morphine to take with me and I rationed out the last 4 mgs of Novo Seven that I had until the morning. 

Friday night was one of the most stressful and most glorious nights I've ever experienced.  My husband fulfilled his dream of becoming an ordained minister in the United Methodist Church and I was caught unprepared with my son and I could not take his pain away.

I know, without a shadow of a doubt, that I will never leave home unprepared again.  I will plan for the worst and hope for the best. 

So many people around me tried the best they could to help us out and knowing they were there made all the difference in the world.

I felt completely defeated, broken, irresponsible….the list goes on.  But what I do know is that I would do anything in the world for my children and if going through this experience has taught me a lesson and all is well today, then I am a blessed woman.