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

S.t.r.e.n.g.t.h.

The truth is, I can handle it. The task before me is not greater than the strength within me.

For years, I have had an inner voice telling me:

"I'm not good enough. I will never be good enough. I can never reach my goals. I am a total loser. Everyone else has it together, but I always screw things up. Why do I always fail? I don't deserve this job."

I have had this voice in my head and heart for as long as I can remember. It has prevented me from so many things, damaged relationships, destroyed my education, and causes me great pain.

One of the reasons I love birthing so much is that it is one time when I overcome this enemy within me. When I am birthing, these words shine from my soul:

"I am good enough. I am reaching my goal. I am a champion. I can do all things through Christ who strengthens me.* I am doing great. I was made to do this."

The task of birthing my child is so great, I don't let the negative voice ever have the microphone. EVER. My child needs me, and I can do this.

I was recently reading over a letter written to me by one of the dearest friends I've ever had. She wrote in response to a conversation where I shared my discouragement with her. She told me she loved me and reminded me of Elijah's birth. Eli's birth was and is still the most spiritual birth I've ever experienced. You can read the whole story HERE. Here's an excerpt:

The contractions were so intense. I tried a little push with one contraction. No, it wasn't time yet, but I could tell that this was going to be harder than Ana's birth. I thought, "I CAN'T DO THIS". At this time, God impressed on my heart not to speak and claim those words of defeat, but instead to call out to Him. It was between contractions. Everyone was totally quiet. I was facing the wall and couldn't see anyone in front of me. It was just God and me and my baby. I prayed out loud, "Father, thank You for giving us this baby. Thank you that he's coming today. 'I can do all things through Christ Who strengthens me.*' Thank You, Lord. You bring this baby out. This is all You. Come on, let's go!" After that I was on top of my pain (because my Jesus was carrying me).

Just reading that again brings tears to my eyes. I was so close to God. What has happened to me?

I've always desired to know and understand everything. This makes faith a challenge. Well, here's what I know and understand:

1.  When I try to be successful in my own strength, I fail, I disappoint, I even hurt people to accomplish my goal (i e: yelling).

2.  When I let go, trust Jesus to give me strength, love others, and just steadily keep trying, I am a conqueror and a blessing to my family.

I want live my life like I birth my babies. My family needs me. I can't let let that negative inner voice have the microphone anymore.


"I am good enough. I am reaching my goal. I am a champion. I can do all things through Christ who strengthens me.* I am doing great. I was made to do this."

*Philippians 4:13

"Carters Story" by Jenny Fawcett Ruklic

I've been a part of the hemophilia community now for 4 years.  One of the first things that impressed me was how many parents are the leaders in the hemophilia community.  One of these parents is Jenny Fawcett Ruklic.  It was a journey for her to even admit to herself that her son had a bleeding disorder, but she did.  Now she has an organization that is dedicated to raising funds for research to find a cure for hemophilia.  Recently, she posted her story, "Carter's Story", and I wanted very much to share it with you all.  Thanks, Jenny, for sharing your journey with us.  

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"Carter's Story" by Jenny Fawcett Ruklic:


Over the last few months, I have made so many friends via Facebook, and a lot have joined our Page Carter's Quest for a Cure, Mall in the Hall and Bids for Bruisers. The one thing that I think may be missing is our story. So, here is my rendition of what has inspired me to become the advocate I am for my son.

Jenny and Carter

Carter Stephan Ruklic was born June 12 2008, a beautiful 8lb boy with a beautiful head of dark brown hair.  The labour was interesting. I lost a lot of blood, and it took a really long time for the doctors to stop the bleeding, but I never thought anything of it.  I had a daughter 5 years earlier, and it was the same thing.  Everything went fairly smoothly.  We were released from the hospital the next day and sent home.  2 days later, the community nurse came by the house to do the heel prick and weight check.  All pretty routine until I thought of it later.  Carter`s heel bled for a really long time.  Again, I never thought anything of it.  The nurse took her information and left.

Carter and Cassie

The weeks went by, and I started to feel a little emotional, I think the beginnings of postpartum.  On week 4, we had an appointment to have Carter`s circumcision done.  My husband works crazy hours during the summer.  We own a landscape business.  So, he is working tons.  So, when the appointment came, I thought, "I can do this myself no biggie. . . " (Which, if I can recommend now: Take help when someone offers to go with you to this.)  The procedure was horrible, the most emotional thing I had ever had to go through.  I was crying and was so upset for seeing my son cry that way.

After the procedure was done, we went home.  I picked up my daughter from Aunties house, and we went home to spend the day in the wading pool and running through the sprinkler.  Since Carter was born, I was depressed and sad, and Cassie was missing her Mommy.  So, I thought I would spend the day with her hanging out.  Carter slept all the time anyway. Little did I know that this was the day that would change our lives forever.

When we arrived home, I went to change Carter`s diaper, only to find an entire diaper filled with blood.  I called my sister.  I hadn't gone through this.  I wasn't sure if this was normal.  She had a boy. . . She would know.  Tara told me there shouldn't be blood. . . PANIC. . .  All I could think was that the doctor ruined my son.  I called the doctor's office. He told me to go to the Children's Hospital.  I'm sure at that point he kinda knew, but nothing was said.  So, I called the husband, asked him to meet me there. Cassie, Carter, and I were on our way to change our Lives.

Jenny and Carter

We arrived at the hospital, and they took us right away.  They stitched up Carter with 2 stitches, apparently the circumcision split. . . owww, painful.  They asked us to stay for 1 hour just to see if it continued to bleed.  I was confused why would it still bleed.  Are they telling me that they don`t know what they are doing?  Anyway. . .  I sent Will back to work with Cassie.  He was in the middle of building a pond, and there was a storm coming.  So, he left, and I said I would call on my way home.  An hour later they checked and it was still bleeding.  In came the lab to take some blood work. I was so confused as to why they wouldn't let me go home. . . 

Two hours later, the blood work came back, but they are not telling me anything.  My brother in law shows up.  Roger didn't want me to be alone.  I hadn't called Will back yet, and then The doctors come back and say that there was a problem with the blood test, and they needed to run some more.  I tell them, "Fine, but what is going on?"  No one answers me.  Roger calls Will, and my husband is back with me at the hospital.

Around 7 at nite, we have been there for 5 hours. They send a lab tech in to tell us in very broken English that our son has a shortage of factor in his body.  I have no idea what he is talking about.  What is factor?  I just looked at Carter and started crying.  Keep in mind, I was still postpartum.  Finally, the hematologist comes in and tells us that Carter is a moderate hemophiliac. . . SHOCK. . .   He gives us the HTC information and tells us to come for a meeting with everyone on Wednesday, and they will be able to talk about everything and answer any questions.  I then spent the next 48 hours crying and sobbing, asking God why he would do this to Carter and our family.  I just wanted answers.

Jenny, Will, Cassie, and Carter

We went to the clinic and met the entire staff that was going to oversee Carter`s condition.  At this time we are also told that the lab made a mistake, and really Carter is a severe type A and not a moderate. . .  Do these people know what they are doing?  My blood was boiling. . .   They handed us this giant binder filled with really scary things: joint bleeds, muscle bleeds, spontaneous, what. . . , and on and on,  and a bag for the binder.  I felt like we were just given a prize for being the 100th customer.  lol

We went home, and I took the binder and bag and put it under my bed, cause as a child that is where the monsters go.  I spent the next 6 months in a state of depression.  My test came back.  I have 32% factor in my body.  It explains all the bleeding episodes as a child, and knee and ankle problems.  I also had Carter retested. . . denial.  So, 6 months went by, and I didn't want to talk about it or really acknowledge it until Carter had his first bleed:  rolled over on a toy and bruised his back right on kidney area.  So, I started to cry.  Then, all of a sudden, I stopped, looked at Carter, smiled and said, "Mom's got u".  I ran to our bedroom, and got the binder from under the bed.  The monster was looking me in the face, and I needed to help my son.  So, I took a deep breath and did what I had to: admitted that my son has hemophilia.

After that day, I have hit the ground running.  I engulfed myself with information.  We attended the society events and I even went to a women's weekend for women with bleeding disorders.  I met people and talked to everyone I knew about Hemophilia.

"Carter's Quest" Bottle Drop

2 years later, our lives have changed so much.  My son is an amazing little boy and normal.  We are joint bleed free, 2 muscle bleeds, and numerous soft tissue bleeds and head injuries.  He wears a helmet at times and knee pads.  I have managed to train in giving my son his infusions at home, no port, I find the vein 3 times out of 5.  I joined the board for the Southern Alberta Chapter of the Hemophilia Society.  We attend The Parents Empowering Parents weekend, which, if anyone has the opportunity to do, do it.  My husband and I are not anything special, but we love our kids and Carter is no exception.  Aside from the underlining condition, he is very normal.  He loves to cuddle, he loves to jump, and he gets hurt. . . 

I can`t change what we are going through, and I can`t take away the pain that Carter may go through in his life, but I can be his strength.  I can be here to tell him that he is special.  God chose us to be the ambassador to his needs.  I will do everything in my power to raise Carter and Cassie as I would any other children: with morals, strength and courage.  I am strong today because of my children and not in spite of them.

Over the last little while, I have met some extraordinary people, and I will cherish their friendship through Facebook.  I love all my hemophilia friends.  Thanks for being here to help guide my way.

Love to all. . . 

---------->  Click here to visit the Ruklic's website <----------

"Badge of Honor"

In my last post called Jealousy, one of my friends used the phrase "badge of honor" in her comment. 

"It's [hemophilia is] kinda a "badge of honor" in your family. It's seen as something that makes Eli & Silas unique & special. They get more/different attention than the others."

I am so grateful that my friend was so honest with me.  This phrase will not get out of my head!  It kind of haunts me, but also probes a lot of good thought. 

I hate that I have given that impression to others, but especially that I may be giving that impression to my precious children.  Having hemophilia is not a badge of honor in our family.  However, if it is perceived as such to any of our children, there's a problem. 

Hemophilia is a big part of our lives.  We have chosen to make it a big part of our lives.  Matt quit his teaching career to go to nursing school because he wants to work directly with other children with bleeding disorders.  I've started Bubble Wrapped Birth, and have big plans for it's growth in the future.  Because of these things, it would be easy for our children to think that hemophilia makes someone more special to us.  This is a problem. 

Some other moms suggested that I let the other children be involved with prophy.  What a simple idea that makes a big difference!  We tried it this morning, and it was great!  Since hemophilia is a big part of our lives, we need to let everyone have a hand in it.  I did not see one ounce of jealousy or negative feelings at all this morning because prophy wasn't just about Eli.  It was also a special time for Isaiah and me.  I am getting it.  Slowly, but surely, I'm getting it! 

Now, back to the "badge of honor" idea. . .

Our children all have a badge of honor just because they are our children.  They don't have to have a unique physical condition or talent or place in history or birth order to be special.  They are special just because they are exactly who God made them.  What I am learning from this conversation is that I need to be careful to communicate that everyday in my words and actions because that is what really matters.  My children will not remember "what mommy meant", but rather "what mommy said or did and how it made me feel". 

Thanks again for sharing your thoughts with me, and being a part of my growth as a mom!

 

Jealousy

Over the past few weeks, I have learned that our oldest son, Isaiah, has some jealousy about hemophilia.  We talked about it a lot. I asked him to draw pictures of what he'd like about having hemophilia and what he wouldn't like.  He liked the idea of getting prophy and going to the HTC for an appointment just for him.  He didn't like the idea of getting his blood drawn, though!  Then, he drew what he liked about Eli and Silas having hemophilia and what he didn't like about them having it.  He liked nothing about their having it, and didn't like how Eli couldn't play with them when he got prophy.  He told me that he felt Eli got all the attention because of his hemophilia.   

I was so sorry and heartbroken that he was carrying these feelings with him.  He never acts like he's jealous.  He is very protective of Eli and Silas because they have hemophilia, and he was so pleased for Eli when he heard that Silas had hemophilia too.


So, our conversation got me thinking.  Yes, some of us need factor, but whether we need to get prophy or not does not make us who we are.  I talked to Isaiah about it, and he listened.  Now, I am trying to pay closer attention to what is unique and special in each one of my children's lives instead of our current "affected vs. unaffected" tally.  I am still new at this and I'm learning.  And right now, I am being reminded that. . .

I am not only a hemo mom, I am a mother.