Saturday, February 9, 2013

Silence Broken

Eli (5)
I haven't been able to write for months, but now I'm finally ready.  I think I was overwhelmed by the article in the paper about us.  We were so honored to have been asked for an interview for the local paper.  The sweet journalist came to our home, asked all about our family, and a lot about hemophilia.  I guess I should've expected it, and it's not a bad thing.  It was a very good article.  I just hoped that it wouldn't be all about hemophilia.  Hemophilia is a part of our lives, a big part even, but our family is about so much more.

We get up to music most every morning, have breakfast together, see Matt off to nursing school, hope to get a call about an LPN job at the hospital, do chores, have school, eat lunch, clean up, play, laugh, watch shows together, read books, go to church, take Ana to ballet, take Isaiah to Cub Scouts, have so much fun when we are out together, do prophy, and deal with bumps and bleeds when they come.

Silas (1)
When Eli was first diagnosed with hemophilia, I was so confused and scared.  I needed to ask God, "Why?!  What is going on?!"  I needed to cry.  I needed to lean on others.  I began to be empowered as soon as our HTC met with us.  Our nurse gave us a copy of Laurie Kelley's "Raising a Child with Hemophilia: A Practical Guide for Parents".  They gave us forms to fill out to go to the NHF annual meeting in Denver.  Richard, our nurse, told us, "YOU will be the ones telling the doctors and nurses about hemophilia.  You are your child's greatest advocate."  He showed such confidence in us even though we understood so little of what was happening at the time.  That kind of treatment is so powerful.  It changed us and we are forever grateful to Richard.  When it came time for Eli to start prophy, Richard trained us better than nurses are trained.  I can say that now that my husband is in nursing school.  As we read and read and read, talked to other parents, went to conferences, and went to clinics, our courage grew.  We were stronger all the time.  We could stand up to pretty important medical people for our children and be respected.
Isaiah (9)

Then, the newness wore off and hemophilia just became a normal part of our lives.  I think that's what is supposed to happen.  There are bigger things in my life than hemophilia.  If you met Eli, you wouldn't just be thinking about a boy with hemophilia.  He is a little guy bursting with personality as you can see in the picture above.  He has a great life.  He is so smart.  He loves school, video games, playing with his brothers and sister, and even knows how to change a wet diaper (to my surprise this week)!

Silas is our other little bruiser.  He has been through a lot in his 16 1/2 months since birth.  He is the sweetest most loving baby I've ever met.  His nature is to love you.  It was so hard before he got his port and we could treat him at home, but now that we are doing prophy at home and treat bumps and bleeds immediately, life is getting back to normal.  Here's a sweet picture (above left) from prophy today.  He kept nursing while Matt treated him.

Ana (soon to be 7)
Eli and Silas are 2 of our 6 precious children.

Isaiah is the most amazing biggest brother ever.  He is such a leader, so smart, loves caring for people, reads like crazy, is a gamer, wants to learn chess, and makes friends wherever he goes.

Ana is our tough little princess.  She holds her own in her crowd of brothers!  She loves ballet, art, music, and taking care of babies.  She is a huge help to me.  One of Ana's strengths is that she always knows what she likes and doesn't doubt herself.  I envy her for that and admire her greatly.

Malakai (3)
Malakai is a spunky little dude.  He  loves to make us laugh, loves chewing gum, and is very clear with his feelings.  He's small, but mighty!  When Silas was born, he claimed him as his baby.  He is a fun and adventurous person.

Our 6th little one is due mid-August.  We don't even know if we are having a girl or boy yet, but hope to find out in a few weeks.  We are very excited about our newest addition.

My husband, Matt, is busy with nursing school and working at the hospital.  He is even vice president of his class.  I am "just" a mom.  I have mountains of laundry (for dirty and clean).  I have dishes to get done.  I work very hard at homeschooling our children, and it has been exceptionally awesome lately!  I need to clean the house, but have a hard time finding time to do it.  I am learning and growing all the time. I mess up.  I learn.  I say I'm sorry.

My point is to illustrate that our family has a unique situation with hemophilia, but we are more than that.  Every family has their uniqueness.  We love our family.  Matt and I have been married for 10 1/2 years.  We love each other and we drive each other crazy!  We have been through so much together and it all just makes us stronger.  We have hopes, dreams, and fears just like everyone else.  I am so glad to spread the word about hemophilia, and also to let you know that our crazy little growing family is going strong.  I hope yours is too!

The "Fantastic Five" hanging out playing video games


  1. How wonderful! Welcome back. What a terrific family you have been blessed with!One day at a time, that's what God gives us. Each of us can get overwhelmed by daily living. Thanks for sharing. You are an encouragement to many!

  2. I have to be honest Sarah, I was almmost scared to read this thinking something was wrong with baby 6 and you were ready to talk about it. I'm glad that everyone is doing great.! Your absolutely right that hemophilia is just part of the many other things we have going on in our lives. Your post shows how a hemophilia family lives a "normal" life! FYI, Love the picture of Eli lol


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