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.

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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.

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.  

A Prophy Day with the Reeves Family

Today, Isaiah worked very hard photographing prophy to help me with this post.  I am very pleased to invite you into our home, and share our prophy routines with you.

Isaiah Reeves, photographer

"Time for prophy!" I call out to the troop.  Everyone scrambles to get their prophy treat from the prophy treat jar.  They are only allowed one prophy treat, and only on prophy days.  Here's Ana offering you a prophy treat.  Everyone gets one, hemo or not.  We're all in this together.  As you'll see in this post, we all have a part to play.  Prophy is a family event.
When everyone gets their treat, it's time to get started.  We keep our stock of prophy supplies in the big bookcase you can see on the left.  There's even excess supplies in the bottom cupboards.  I just forgot to open them up for the picture.  We used to keep the factor in a little fridge.  Well, the fridge broke, and it was soon after that they told us that the factor didn't need to be refrigerated anymore.  So, now, we organize the different unit amounts in the drawer in the bookcase.  Here's Malakai showing you the factor in the picture below:

We also have a "prophy cabinet" (shown below). This is where all the action happens.  There is a little of almost every supply in the drawers of the cabinet, and we set up right on top.  It's on wheels too which is VERY convenient.

Before I set up, the hemo boys get their numbing cream on their port sites.  Eli hammed it up for these pics!

 

After the cream is on, I let Eli choose what he wants to watch for prophy.  When Silas develops an opinion on this, he will get to choose too.  Today, he wanted to watch The Aristocats.  Usually, it's a show, not a movie, but it was fine for today.  Then, it's time to set up.  I won't go into all the detail of each and every step that is involved with this, I'll just show you the finished product.  Here's what the setup looks like for Eli's prophy (below).  The only difference with Silas's setup is the heparin.  Eli uses the yellow.  Silas uses the blue.

We're all set up, the cream is set, and movie is on.  Now, it's time to treat.  Eli goes first.  I take off his shirt, peel off the tagaderm, and wipe off the cream with a gauze pad.  Then, I clean his port site with chloroprep.  He knows to make sure no one touches or breathes on his port while I go wash my hands and put my sterile gloves on.  If anything makes him concerned about his port's sterility, I clean it with another chloroprep.  This has happened a couple times.  When I come back gloved, his port is dry and ready to be accessed.  As you can see in the picture below, he is completely numb and busy watching The Aristocats while I accessed him.

We call the pull back of blood the "little red snake".  Sometimes, the kids (Eli included) call "Come out come out, little red snake!".  Then, Eli tells him to "go back home!".  You can see little red snake in the next pic:

When prophy is over, it's time to snuggle.  Hemos need to hold pressure with gauze on the site a little longer than non-hemos.

After at least 5 minutes, we check to see if there is no more bleeding.  Then, a little band aid over his port means Eli is all done!  Well, after he helps clean up the prophy garbage.  ;)

Eli is done.  Now, it's time to set up for Silas.  After each setup, I take the stickers off of the factor bottles and stick them on the calendar, and now include color coded initials.  There's today's treatment (Well, yesterdays, now) on the 9th:

"OK, Silas.  Your turn now, buddy!"  I put him in his bouncy chair, and Ana gently holds his hands to keep him from touching or grabbing things he shouldn't.  After his cream is wiped off, I wash my hands.  I get my sterile gloves on, and then clean him with chloroprep.  I can't trust it to stay sterile while I'm gone like with Eli.  I give it a bit to dry, access his port with the huber needle, and administer his treatment.  < Thank you, Lord, for that numbing cream! >

When he's all done and deaccessed, it's his snuggle time with Mommy!  Ana did a great job!  Silas's snuggle time is a little less relaxing than Eli's because he just wants to nurse.  YOU try holding a baby while holding pressure on his port, and nursing at the same time!  I've done it.  It's not easy, but it can be done!  However, I opted not to today.  I really could use more than 2 arms!

(The towel on my head is to protect prophy from my hair. It works very well.)

Now, our prophy day is complete!!  Thanks for joining us today!  

Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

Jeff and his wife, Stephanie

"I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.

"The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke that "hemophilia is the new asthma!" While it may seem, to a clotter, that we hemos are afflicted with this terrible curse and will never experience the life which others would have wished for us, the reality, despite even the fears of a mother, is that there is absolutely no reason to believe that a hemo's life, especially today, will be any less full or rich or adventurous or rewarding than the life of our fully clotting peers. This isn't romanticizing either. Hemophilia has in many ways become an affliction of the soul and mind just as much, if not more than, of the body, and it's important that we treat it in those regions as diligently and bravely as we do the body.

"Which brings me to the part where I am going to challenge parents. When a parent (or grandparent, uncle, aunt, guardian, etc.) makes a statement that they feel guilty or regret that their child has hemophilia, what they are really saying is that they feel bad because their hemo is less than they could have been. Argue the point if you like, but tracing back from these statements, which I see often, that is the only logical end point. If one feels guilty for the condition of their child, then one sees reason to feel guilty, which means one sees in their child a condition in which that child is diminished or held back from being the something more they would be were that condition not present, which means that they see their child as being less than they could be. As a hemo, I must admit, that when I see someone expressing feelings of guilt because they had a hemo, or a refusal to have children because they're a carrier, or sharing the "bad news" that someone had a hemo, I feel demeaned and somewhat offended, as the greater idea those statements convey is that we hemos are less than we could be, less than our parents hoped for, less than our siblings or peers, less desirable. Less. This is simply not the case. As I discussed earlier, we hemos are equally capable today as any clotter. With modern treatment there is simply no challenge, activity or experience partaken by clotters which it would be impossible for a hemo to participate in. We are active, we are strong and yes, we even play football and hockey now. Yes, that really happens. But to get back to my main point, it is more attitude that restrains us today than hemophilia. We face far more challenges in overcoming the perception that hemophiliacs are fragile creatures at risk of greater harm than our clotting peers than we do of actually being held back by our condition itself, and this perception finds its home in the fears and guilt of parents and guardians.

"I will break here and state that yes, being a parent is incredibly difficult and the fears that a parent faces are sometimes insurmountable. We all know this, whether we are parents ourselves or not. At no point do I intend to convey that parents don't have a tough, demanding job and in no way am I demeaning a parent's emotions, fears or feelings. They are all reasonable and understandable. What I am hoping for, however, is to challenge some parents to engage in genuine self examination and to really confront how their emotions, fears and feelings affect the hemos they are experiencing those feelings for. To delve into themselves and ask themselves questions which many parents eschew, such as "Are these feelings beneficial? Is the way I feel good for my child? Even though I feel this deeply, is it really best for my child or is it creating an attitude that is detrimental to my child?" These are difficult questions, yes, but they are good ones to challenge one's self with. Quite often in my experience in the hemophilia world I have been confronted with parents who don't take this step and instead express their fear/guilt/regret/what-have-you and then stop there and wrap themselves in the mantle of parenthood, stating that "As a parent I am allowed to feel however I want!" Well, yes, we all are. And that's the catch. As a parent one is absolutely entitled to feel however one does, but parents are not released from the consequences of their feelings and the affects which they have on others, just as a pebble cannot be expected to be dropped into a pond without causing ripples to emanate and flow away from it. One's feelings of guilt for having a hemo may feel entirely legitimate to them, but in their child they may cause feelings of inadequacy. While a parent is mourning that their child has hemophilia they may be subconsciously communicating to said child that they are not as special and capable as they could have been born. The ramifications of a parent's attitude, even if not explicitly stated or expressed, are profound. I've seen, too many times, proof of this at summer camp. I've attended hemophilia camps since the mid eighties as a kid myself, and have worked as staff since the nineties. Every year, without fail, I observe at least one hemo who comes into camp meek and apprehensive. They're unsure of their potential and afraid to fully engage. As the week progresses and we work with them to instill courage and empowerment, they come alive, and by the end of camp they are running, jumping, climbing rock walls and living with the gleeful abandon that they deserve. It's glorious. But then, on the last day, they retreat back into themselves, especially when their parents show up. Now that Mom is around again it's time to go back to being a hemo, a defective kid who isn't "normal." It breaks my heart every time because it doesn't have to be. Many parents don't even realize that they are doing this, which is sad as well. They think they've contained their guilt, their fears and their regret and that their child is completely unaware, but that's merely an illusion. Their child is very much aware of how Mom and Dad feel and so, out of his love for them, he plays along. "Mom feels guilty that I have hemophilia so I'll be good and not do anything 'dangerous.'" "I don't want to make them feel worse so I won't try out for soccer." And so on and so forth. They don't live up to their potential and their parents never see what their child is really capable of. Hemophilia hasn't held them back; the attitude and perception that it is less than normal and cause for guilt has. I see it all the time.

"So again, I challenge parents to really look deeply into themselves and examine their emotions and feelings. Ask yourselves if how you feel is really, legitimately warranted and if it is the best way to feel for your child. Examine why you feel a certain way and whether or not it is based on fear or reality. Reject the comforting but unhelpful sanctuary of "I'm a parent and can feel however I like" and instead proceed with the attitude of "Even how I feel inside affects him so what is the best way to look at life? And him?" Of course these kinds of exercises are difficult, but so is learning to self infuse, which your little hemo will have to do regardless. Consider this "prophy for the soul." I promise you, it's for the best, for everyone. Hemos who grow up in homes where the attitude is "You just have hemophilia, not 'made out of tissue paper syndrome' so get outside and play" flourish.

"In closing I'll pose the question, "What is normal anyway?" Not having hemophilia is normal? I call shenanigans. From my perspective, it's clotters who are abnormal. They freak out at the thought of getting stuck with a needle, a bruise gives them panic attacks, they think a limp is a sign that it's time to see a doctor, they usually can't wrap an ankle to save their lives. Poor clotters... So far from normal... See what I'm getting at? There is no normal, so there is no model of normalcy to hold a child up against. We all have conditions. We are all imperfect, and in this lies our perfection. So from a totally "normal" hemo who hopes to one day live free of the perception that I am less, please challenge yourselves to no longer see us as less. See us as more. See us as normal.

Or I'll stick you."

SCAR +++++

So much has happened since my last post, the biggest being Silas's port surgery.   He had a joint bleed and a muscle bleed, and we needed to get him on prophy to prevent more bleeds. Everything went well.  We were very impressed with all the doctors, nurses, and staff at Peyton Manning Children's Hospital in Indianapolis.  The picture I posted to the left is my favorite.  Silas is such a sweet tempered baby.  He even smiled and waved when the child life specialist was taking him away for his surgery.

We had a lot of support.  My friend, Tiffany watched the older 4 children when I had to take Silas in for pre-op meetings.  My parents came down to watch the children at home while I was with Silas for surgery.  Matt couldn't come right away (clinicals).  So, my Dad stayed with us in the beginning.  While we were in IN, our life long family friends, Tom and Virginia even came down to help.


The hospital was amazing.  They took excellent care of Silas with so much love and compassion.  They also took care of me as the mom.  I was well informed during the whole process, and I could tell that they cared about all my concerns and desires as the mom.

Matt came to the hospital that evening.  He brought Eli with him.  Eli needed prophy while we were gone.  So, it made sense to bring him and treat him there.  It was a sweet time.  Eli and Silas really bonded on a new level.  Their hemophilia gives them a unique bond, and now they would both be on prophy.  Eli has just blossomed since Silas got his port.  He is thinking of Silas now, not just himself.  So, he sticks his chest out more, and never whines or complains about the needle.  Silas watches him.  It is precious.

After a few days, we came home, and continued the post-op factor treatments.  When we got home, we were blown away at the amount of work my parents and Tom and Virginia had done in the house: cleaning, repairs, new improvements.  Words cannot express how thankful we are for the work they've done.

Silas's surgery was two weeks ago, now.  We have had several perfect prophy treatments at home, until yesterday.  He has developed a hematoma over his port.  We're not sure why this has happened, but until it's cleared up, we are treating the bleed peripherally [via ER :(  ], then he will undergo a dye study to check his port for leaks.  If there is a leak, his brand new port will have to be replaced.  This is such a heavy burden on all of our hearts right now.

Yesterday, soon after a sponge bath, Silas's steri-strips finally came off.  So, now his scar is visible.  It looks very healthy, but it is still a big ugly scar on my baby's little chest.  Late last night,  as I was nursing him in the recliner, that scar was staring me in the face.  It (along with the newly developed hematoma) was making me sick to my stomach.  Nobody wants to see their baby's perfect little chest with a big scar on it.  It broke my heart, and I was tempted to mourn over this.  I couldn't let myself.

I started to think about all that scar represents:  All the hours of prayer and discussion over the decision to get a port, all the thought and love that motivated us to go ahead with the port, all the sweet nurses who tried (and often failed) to treat him peripherally for a bleed at the ER, the 3 1/2 years we've worked with Elijah's port, the intense training we received during Eli's post-op hospital stay those 3 1/2 years ago, the amazing support from all of Silas's brothers and sister, all the hard work that went into developing the technology of the port, all the years of study that Dr Kokoska (surgeon) and Dr Bush (anesthesiologist) spent in medical school, my parents and Tom and Virginia coming to help from Michigan, Bubble Wrapped Birth and all the love and support here, all the people around the globe praying for Silas, freedom to treat bleeds at home, and prevent bleeds with prophylaxis. . . The list is virtually unending.

So, I have a choice.  It's all about perspective.  I can choose to weep over my baby's now scarred chest, or I can choose to rejoice over that beautiful unending list of blessings when I look at Silas's scar.  So much love and care is represented there.  I just hope and pray that his port is o.k., and he doesn't need it to be replaced.  One step at a time.  God promises to take care of us, and we have to choose if we will trust Him or not.  I have to trust Him.  If I didn't, I couldn't get through this.

Thanks, Mom and Dad.  You both have taught me to have the correct perspective, and you were the inspiration for this post.

Isaiah, #1

Isaiah

There was a time when there was just one.  One who stole my heart.  One I spent every moment of every day and night with.  One child.  I was always holding him, rocking him, laying down with him, nursing him, bathing him, "slinging" him, changing him, kissing him, reading to him, singing to him, or dancing with him.  He was my day and night.  He was our baby, the one and only.  So special.  What an amazing, smart little guy.

I remember nursing him when I was pregnant with Ana until my belly filled my lap and it was pretty awkward to hold him sometimes.  Then it would bring on the contractions, OUCH.  The night Ana was born, Isaiah got right in the pool with us.  He loved her instantly.  I nursed them together right there in the pool, the expert and the rookie.  He was still sleeping in our bed when Ana came along.  I put a mattress next to the bed a couple months earlier so he could get used to his own bed.  He did a really good job because I was right there and he knew he could count on me if he needed me for any reason at all.  He often climbed up to our bed or I went down to his.

Isaiah holding me through my labor with Elijah

A couple more years past and I was having our third child, Elijah.  Isaiah wanted to help me so much, and held me through each contraction.  His little pajama shirt was getting wet from my arms.  He held me tight.  He was such a great big brother to Ana already and was so happy to now have a little brother.

When Eli was 4 months old, we found out that he had hemophilia.  We were so scared.  I didn't know anything about hemophilia.  Isaiah was scared too.  It became apparent that he was having some anxiety about keeping his baby brother safe.  He was worried that he or someone else would do something that would hurt him and make him bleed.  Isaiah was only 4 years old.  That is a heavy burden for such a little guy.  Of course, we talked a lot about it, but nothing could really take it completely away.  The fact remained.  His baby brother had hemophilia.

Isaiah and Elijah at NHF Denver 2008

The next year was the hardest for our family:  My husband lost his job. Eli had his port surgery.  I found out I was expecting #4.  We moved from the West coast to the East coast.  In my third trimester, I had to make quick decisions for a birth plan that now included possible hemophilia in the mix.  Ultimately, we decided on a hospital birth with a midwife, but fought for a waterbirth.  A few weeks later, our fourth child, Malakai was born making history as the first waterbaby at Women's and Children's Hospital of Buffalo.  He did not have hemophilia after all.  We brought him home the next day.  Isaiah, Ana, and Elijah were absolutely thrilled with their new baby brother.

A year later, I was expecting again, and we were moving again.  My husband was going back to school to get an RN, and eventually go into hematology to help other families with hemophilia.  So, we moved to the midwest and had an awesome homebirth for our fifth child, Silas.  Cord blood testing showed that he did have hemophilia.  When I told Isaiah, you know what he said?  His eyes lit up and he ran out to tell Eli that he had a hemophilia buddy now.  That boy is just amazing and full of love.

My dad, Isaiah, Me
Eli, Ana
Malakai, Silas

He is 8 now, and older brother to 4 little ones.  He is a cub scout, brilliant mathematician, avid reader, scooter and bike rider, gardener, my righthand man, video game champion, and he loves to take care of people.  Sometimes, his "older kid" needs are set aside because the baby's or another little one's needs are more pressing at the time.  I want that to be different.  Not only is Isaiah loved and important just because he is our son, he has given so much to his family.  He has dealt with a lot in 8 years.  I love him so much, and I appreciate him.   Tonight, after the younger 4 were in bed, I hung out with Isaiah on his bed.  We read his Sonic the Hedgehog comic book together.  It was so nice to have that special fun time with just him.  We need more moments like that.  And I really need to learn to catch properly with a glove because the last time Isaiah was trying to teach me. . . I totally stunk.  ;o)

Meet Craig Wright

Craig Wright

Over the past few months, I've been learning a lot about a man named Craig Wright.  Craig was born in August of 1953.  After he was born, he was diagnosed with severe hemophilia when he cut his lip and it wouldn't stop bleeding.  He spent a lot of time in the hospital because of his hemophilia and received gallons of blood from numerous donors.  Life for a hemophiliac was much harder back then.

Craig grew up on the family farm in Prince Albert, Saskatchewan Canada.  At a young age he expressed a desire for farming.  He was told that he should give up that dream because a life of farming would be too dangerous for a hemophiliac.  That did not stop Craig from following his dream.  He grew up to take over the family farm.  He married, and he and his beautiful wife were blessed with 3 precious children.

Craig with his family

However, the Wright's lives were turned upside down one day when 32 year old Craig learned that he had contracted AIDS from bad blood.  His daughter, Ashley recalls:  "I was quite small (maybe 5-7 years old).  I remember seeing one (commercial on HIV/AIDS) and saying, 'Hey Dad, that's you, right?' and immediately after running to my room because I thought I would be in trouble for speaking about it. We all knew, it was NOT something you brought up!"

Ashley remembers telling her best friend about her dad's condition.  "It was the middle of winter and recess time and I asked her to sit with me on a little snow hill and told her."  Her friend didn't understand the reality of the situation, but knew she was sworn to secrecy until Ashley decided to tell others.  It was three years later in 6th grade that Ashley decided to share the situation with her classmates.  She never imagined that her dad would be laid to rest before she would finish 7th grade.

Craig's daughter, Ashley with her son, Parker

As Ashley shared her memories with me, I was deeply impressed with her parents.  Ashley remembers, "They came into the school and did presentations for the class as well as the parents, and I know they had to go through a whole bunch of red tape to even think about discussing such a topic with children.  I remember being scared but yet so proud of my dad for standing in front of the class and explaining to them in children terms what was going on in his body and why.  Needless to say, the children took it better than the parents.  I distinctly remember at the parent info meeting, the parents of the children in my sister's class saying, 'We do not want your daughter playing with our children.'  How do you even respond to that?!  Being a mom now, I have no idea how they handled that without tears!"

Ashley remembers that her dad missed being in his band.  She also remembers the "countless hours and hours he spent on the phone with lawyers and conference calls as well as the many trips to the lawyer's office or the lawyer coming to the house."

Craig was driven by truth and justice.  When he was infected with a deadly virus as a result of others' mistakes, he wanted those responsible to be held accountable.  He dedicated the remainder of his life to fighting for compensation to the families affected by bad blood and holding the responsible parties accountable.  He was deeply involved on "The Krever Commission".  This commission fought for better blood screening, safety of blood products, but mostly for the compensation for the affected families of bad blood.

Craig's grandaughter, Charlie

The Globe & Mail June 1, 1996 states,

"The mandate of the Krever inquiry is twofold:

-Determine how and why more than 1,200 hemophiliacs and transfusion recipients contracted between 1980 and 1985 the virus linked to acquired immune deficiency syndrome and why another 12,000 Canadians contracted hepatitis C from blood and blood products between 1980 and 1990;

-Recommend ways to revamp the blood system so a similar disaster is not repeated."

From studying the documents that Ashley sent to me for this post, I learned how the organizations responsible for the bad blood epidemic were quite upset about the Krever commission.  They thought that the notices of "potential misconduct" should be quashed because they unfairly stigmatized them. 

In 1993, Craig was interviewed by The Leader-Post.  He stated, "The knowledge we are getting now is the governments knew in 1982 and didn't act until 1985.  The time frame is so bizarre, . . .  How do you justify not letting hemophiliacs at the grassroots level know?  How can they justify not publicly putting out a news blurb saying:  'Hemophiliacs, be careful,'?"

In the end, Craig was not completely satisfied with what the courts decided the compensation should be, but he was told that it would be another 7 years before it would make it in front of a judge again.  Since he knew he wouldn't live long enough to see it go to court again, he agreed with what would be given.

It seemed that as soon as Craig knew that his family would be provided for, his body started shutting down.  Then on May 9th, 1996 in a Saskatoon hospital, 42 year old Craig Wright passed away.

Craig's grandson, Parker

I am so inspired by the life and legacy of Craig Wright, and I am so very saddened for his life that was lost.  We can all learn from this man's example.  From the moment he learned of his hemophilia, he decided that it would not keep him down.  Craig lived his life to the fullest.  He was loved and respected by his family, friends, and even people from his local and national government.  When carelessness led to his contracting the AIDS virus, he did not roll up in a ball and sulk or give up.  He let it fan the flames in his heart.  He stood up and fought for his family and many others.  When AIDS ultimately claimed his life, many honored him.

One of the saddest parts of this story is the grandchildren who never got to meet him.  Craig's daughter, Ashley, is brokenhearted that her little ones, will never know their grandfather who was such a hero.  No, Charlie and Parker will never look into their grandfather's eyes as they grow up, ride on the tractor with him on the family farm, listen to their grandpa's singing and guitar playing, or hear his stories from his own lips.  But, I believe they will know their grandpa.  He lives in the hearts and memories of so many people.  I believe Charlie and Parker will be inspired by their very special grandpa's legacy.  Parker's blood inherited the mutated gene carrying hemophilia, but that blood has a legacy of much love, determination, and strength in it from his grandfather, Craig Wright.