8 Things I've Learned about Love

I haven't been married for a really long time, but Matt and I have been married for 10 1/2 years, and we are still happy.  In this first decade of marriage, I've learned some things about love.  I want to share what I've learned with you.

1.  A woman needs to be cherished.  That's how you won her heart, and that's how you're going to keep her heart.

2.  A man needs to be believed in.  He is only as good as you think he is.  I have seen Matt be strong and fearless when I believe in him, push him toward his dreams and encourage him to reach his goals.  I have also seen him wilt and be depressed when I cut him down, discourage his dreams, and criticize his goals.  

3.  Love is work.  If it were easy, it wouldn't really be love.  Just like a birthing mother who works hard to receive the amazing reward of her precious baby, love must work hard through the difficult times.  Coming through those hard times stronger is a precious reward and makes all the work worth it.

4.  Fighting is sometimes good.  For me, our discussions need to reach an emotional level on both sides in order for them to inspire a change of heart in me.

5.  If your children see/hear you fighting, make sure they see you make things right with each other.  

6.  Dates are essential.  I am typing these words desperate for a date with Matt.  I need time with him.  I don't need him to buy me anything.  I don't care if all we do is go hang out at the library or walk around the mall.  I just need him away from the kids, away from the house, away from studying and work and clinicals and everything.  I just need him to focus on me, and me to focus on him without any distractions.  It's probably really good to have to wait a little for it.  We need to crave the time together instead of just taking it for granted.  

7.  I need God.  When things are hard, too hard to have a productive discussion with Matt, I need to run to my Jesus.  I can let it all out to him, cry, scream, yell, ask why.  He already sees it all in my heart.  All I'm doing is being honest on the outside about what He sees on the inside.  I am not just crying, screaming, yelling and asking why because I'm angry, then stomping away.  I am there for help.  I am there for answers.  I wait.  I calm down.  I rest.  Then, I can listen.  I find His answers in His Word, His love letter to me.  I read His promises to me and find hope to get up and go on.

8.  Love is worth it.

~ I love you, Matt Reeves. ~

How to talk to your older child about your younger child with hemophilia

Yesterday, I wrote a post about what I wish I would've said to our oldest child when our 3rd was diagnosed with hemophilia.  It was a very personal post from my heart, and I hope it might help another new parent who may not know what to say.  Today's post is straight to you, Mom or Dad.  I wanted to directly share what I've learned about talking to children about hemophilia.  I hope this helps you the way I needed to be helped back then.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are 5 keys to having a successful talk with your child about hemophilia:

1. Explain the facts in simple terms.
2. Build their confidence as a great big brother/sister.
3. Verbally accept responsibility as mom/dad to handle whatever hemophilia dishes out.
4. Give them age appropriate jobs pertaining to protecting and taking care of their baby brother/sister.
5. End the conversation in a way that empowers and encourages your child.  Hemophilia will be a big part of his/her life too, and he/she needs you to believe in their ability to handle his/her role.

Be careful.  When you are new to hemophilia (when you are new to anything, really) it can be so scary.  You may unintentionally put way too much pressure on your older child because you are so afraid of your younger child getting hurt.  When the baby gets hurt, take a minute to breathe.  Calm down.  It will be okay.  When you are ready, calmly and respectfully ask the older child what happened.  Do not speak down to them or yell at them.  They need to be able to trust you to tell you what happened without fear.  Treat your older child as an important part of the team.

Things to NEVER say to your child:

1. Yell or scream about anything.  It never ever helps!
2. "What were you thinking?  You could have given him a bleed!  Do you want him to have to go to the hospital and have to get his medicine for a bleed?!"
3. "Don't hit his head!  He could get a bleed in his brain and even die!"

The idea is to empower your child, not heap shame on your child.  He/she will carry that shame for years and even life if they don't heal from it.  Shame will not help them be a better sibling or a better person.  Don't put the heavy burden of bleeds/death on his/her little shoulders.  Your child needs to learn how to be kind and treat others with respect, hemophiliac or not.  You should teach your children about what a bleed is and what factor does, but hurling the threat of a bleed at your little one in the heat of a crisis will only make things worse.

Great things to say to your child:

1. "Please tell me what happened."; "Thank you so much for telling me."
2. "Remember to be very careful with his/her joints."
3. "Be extra careful with his/her head."
4. "I know you didn't want to hurt your little brother/sister." -or- "I know you are sorry for what happened." -or- "You know not to treat people like that.  Please go make things right with your brother/sister right away."
5. "It's going to be okay."
6. "I love you."

Mom or Dad, this is an intimidating and sometimes difficult journey, but you will learn quickly.  Things get so much easier when you start treating your child at home.  When you are empowered, your children get empowered.  Love your children.  Teach them what is right.  You can do this and you are ALL on your way to becoming experts.  It's going to be okay.

What I wish I had known to say to our oldest child without hemophilia when our 3rd was diagnosed:

Eli and Isaiah around the time Eli was diagnosed
 with severe hemophilia (Spring 2008)

"Hey, buddy.  I want to talk to you about your baby brother.  Daddy and I just found out that he has something called hemophilia.  I don't know a lot about hemophilia yet, but I am going to read some books and talk to some people who do know a lot about it so I can learn.  You will learn a lot about it too.

"Sometimes, hemophilia might seem a little scary.  See, when Eli gets a boo boo or bumps his head too hard, we might have to take him in to the hospital so they can give him his medicine.  He may even get hurt when you two are just playing.

I want you to know that that's just how hemophilia is and you don't need to worry.

"Treat him the way you know you should treat anyone.  Remember:
-No hitting with your hands or anything in your hands.
-No kicking.
-No throwing toys at anyone unless you are playing catch with something soft.

"As Eli grows up, you will be silly boys together, have pretend sword fights, run, and play super heroes.  Don't let his hemophilia scare you.  Mommy and Daddy will take good care of you all.  Eli is so blessed to have you as his big brother.  You are already teaching him so many wonderful things!

"I have one new job for you, okay?  If Eli gets hurt and you see what happened, it is really important that you tell Mommy or Daddy or another grown-up exactly what happened.  You need to be really brave and tell us even if YOU hurt him.  Don't worry about getting in trouble.  We will be very thankful to you for telling us the truth.  Then, you can help take care of him.

Eli and Isaiah August 2012

"Here's some great things you can do to help:
-Go get an ice pack from the freezer.
-Put on one of his favorite shows to cheer him up.
-Get him his favorite toy or blanket.

"I know this is a lot to understand right now.  You can always ask me or Daddy anything you want to know.  If you ever feel sad or angry, you can always tell us and we will listen.  You are a very special little boy, and I am so glad Eli has you."

A Special Prophy for Nursing Class

Eli's reward for being so brave

Today, Eli let Matt give him prophy in front of his nursing class (37 students + 1 teacher).  When Matt first asked him if he'd like to do that, Eli was very excited!  He was excited this morning before we went.  Then, when we got there, we discovered that we forgot the numbing cream.  We finally got him to agree to do it for a special surprise afterwards.  Then he saw how many people were in the class and hid in the next room while Matt was setting up.  He didn't realize there would be so many people watching. He got pretty uneasy, and wanted to go home.  He hid behind me when we came in the room.  Isaiah was right by his side the whole time, encouraging him and being a brother.  When it was time, I sat him up on the desk.  He was still uneasy and wanted to leave, but he sat still.  The class was so sweet.  They did all they could to make him more comfortable.  They gave him candy, were calm and encouraging to him.  It worked.  :)  He stuck his chest out and Matt rubbed on the chloroprep.  Then, he kept his chest big and turned his head to the side to be sure not to breathe on it.  He kept his chest big when Matt put the needle in.  He is used to numbing cream.  One of the students asked him if it hurt, and he nodded yes, but stayed focused and still.  Matt explained each step, talked about hemophilia, and emphasized the importance of sterility during the treatment.  I was able to say a few things too.  Eli didn't want to say anything, but he was free to speak if he'd wanted to speak.  I was encouraged that one student asked if they should wear a mask to access ports.  After the teacher answered her question, I told her that any effort made by a nurse to keep a port safe from infection means the world to parents.  A mask, extra alcohol swabs, careful sterile/clean technique earns a lot of respect in the eyes of parents, not to mention the obvious benefit of protecting the patient from port infection.

After Matt de-accessed and I was holding pressure with the gauze,  many in the class came up to thank Eli and compliment him on how well he did.  One girl even gave him some money!

I am very grateful that we had the opportunity to share prophy and our knowledge and experience with ports with the nursing class today.  They were very grateful to us too.  I am so proud of Eli for being so brave even when he was a little uneasy at first and had to be accessed without numbing cream.  I think he helped a room full of nurses be better nurses.

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

Thankful

Often times, the scary stories get the spotlight, and understandably so.  However, I think it is very important, especially to new hemo parents, to highlight the good stories too.

Today, I was (am) terribly heartbroken for another's grief.  In my heartache, I look at Silas, who had fresh blood smeared on his face.  "Uh oh, buddy.  Come on." I said as I scooped him up and prepared his 2mls of Amicar.  He took it without any struggle.  I cleaned off his face.  The bleeding was from under his front lip, and the Amicar immediately went to work and got it under control.  Silas got down and continued to play.

A couple hours later, Eli was standing on the highchair to reach something.  He fell behind the chair, twisting his body, and hitting the floor hard.  I jumped up, scooped him up, and carried him to my bed.  Ana got the computer to start a show for him, and a bag of frozen carrots for his ankle (frozen veggies work better than ice packs!).  I put his cream on his port, and set up his factor treatment right there in my room (it really helps to have a wheelie cart).    I gave him his factor, and he's fine.

Both of these situations were quickly and easily handled because we had the tools necessary to handle them.  I couldn't be more thankful.  I am so thankful for factor.  I am so thankful for amicar.  I am so thankful for the bookcase full of medical supplies in the dining room.  I am so thankful for the excellent training we received in CA by our first nurse, Richard McGaffic.  I am so thankful that our boys have never had inhibitors, and that if they ever did, there is treatment.

Let's hold each other up through the inevitable hardships that come, but let's always take the time to count our blessings.