Tuesday, October 21, 2014

Understands More Then We Think

Tonight I was getting Ian comfortable in bed and he said he wanted to write in his journal...so I pulled it out and began writing. Well he was not sure what he wanted to write but proceeded to tell me that he loved me. Then he asked for Daddy, I told him that Daddy was downstairs and would be up in a few. So Brian came in and Ian told him that he needed to be patient and not yell. Brian asked him what he meant. Ian said he needed to be patient and not yell at Becca and Mommy. Mind you nothing was going on for him to need to say that, so Brian asked again what was going on. I said are you talking about now or just in general...Ian said in general. Then Ian said that he needs to say the magic word...well that would be to promise. Ian said you need to promise not to yell and scream at Becca and Mommy. Brian said "I promise I will do my best to try not to yell and scream at Becca and Mommy". The next thing Ian told Brian he had to do was to do the handshake, their special handshake. Brian asked Ian if he could be dismissed...at first he said no, then he looked at me and asked if it was ok, I told him yes and he told Brian he could be.

Love my little man to pieces....he understands more than we think....breaks my heart.

Monday, October 20, 2014

Another tough decision - Back Surgery

For months, maybe even close to a year, Brian and I have been exploring options regarding Ian's scoliosis. As with all kids who have any form of muscular dystrophy, scoliosis comes with the territory. To try to help with the progression of the curve, Ian has been in and out of back braces. I would have to say more out of them then in as when he did have movement the back brace would restrict the movement he did have. In addition, he did not find them comfortable. Brian and I felt that we would rather him have the movement, then be restricted. We have worked hard on positioning techniques to try to keep him as straight as possible, however there is only so much one can do. At his last x-ray about 4 months ago, Ian's scoliosis curve was closing in on 80%. We have known that surgery would be an option...there are two different kinds; a growth rod or a fusion. With the growth rod, he would have one surgery now and then every year have to have another one...putting Ian thru one surgery is a hard enough decision to make let alone knowing that he would have to have more. The fusion would be one surgery and done...this sounds much better to us. After seeing his primary orthopedic at Hopkins we decided to get a 2nd opinion with an orthopedic at DuPont Hospital in Delaware. The Hopkins MD wants to do the growth rod surgery where the DuPont MD wants to do the fusion. Our other option would be to do nothing and his curve would continue to grow and eventually his spine would touch his pelvis. 

On Friday, Brian and I met with the doctor at DuPont to discuss back surgery and find out exactly what he would do along with pros and cons.  We were able to have a more in depth conversation without Ian there.  Dr. Mackenzie would do the fusion from T1 to the pelvis. So Ian's incision would be all the way down his back. He would be in the PICU for 3 days and the move to the rehab unit for about 4 days. Of course this is all in an ideal world.  Getting the fusion would provide Ian with more comfort, better posture, more room for pulmonary to function, more room for GI to function, all of the above would give him a better quality of life.  The cons are him having surgery, risk of infection, risk of pneumonia or anything dealing with his breathing.  However, him already having the trache is actually in his favor. All of this being said we have scheduled surgery for March 31st. We would love to get it done sooner, however we will not electively put Ian in the hospital during flu season and Dr. Mackenzie is already booking into January or February. As I told Dr. Mackenzie, we feel good about everything when we are talking with him however once home over time we 2nd guess ourselves.  He said this is all very common.  He said most families who have kids with SMA which is the closest to what they can compare Ian to have not had regrets about doing it. 

We do know that many may think that doing this kind of procedure on a child as sick as Ian with an unknown life expectancy is cruel…we ask that you not judge and support us in this decision as it will be hard on everyone in our family. All Brian and I have ever strived for is comfort and quality of life for Ian and if doing this surgery is going to help with both then onward we will go.

The x-ray on the left is from Ian's appointment about 4 months ago while the one on the right is from 6 months before that. You can see the difference and how the curve is growing.

Wednesday, October 15, 2014

Our Journey...Happy 16th Anniversary

Our journey began in the summer of 1991...two kids in a summer college class. Four years of a wonderful friendship in the making; February 1996 we started dating, April 1997 began our 18 month engagement October 17, 1998, we said "I DO" - 16 years of marriage. Our journey has taken us to places I never could have imagined...the highs and the lows along with the in betweens. We laugh with each other, we laugh at each other, we cry with each other, we talk with each other, we yell at each other, we support each other. We have endured more in our time together then some will ever endure in a lifetime, we have had conversations in our time together that some will never have to have (some of which are unthinkable). Over the years, we have grown together as well as helped each other grow individually. You are my best friend, the one who is there for me, knows me, supports me (even if you may not want to). We have worked thru our journey together...the good, the bad and the ugly parts of it. Thank you for being my other half, sharing in this journey with me and for helping me to get thru all our "new normals". You and I against the world...I love you.

Tuesday, October 14, 2014

My Little Boo - Brian

As much as she frustrates me and as much as I yell at her and could strangle her (figuratively of course), she is the best grown up little girl that I know and has stolen my heart.  This week I am up in Boston for work training and having to leave my family for so long is not very easy to do.  It’s hard to be sitting here wondering how they are.  But I digress.  Becca just absolutely made my heart skip a beat.  This morning she had a hard time going to school because I had left for Boston so Marci took her to school.  As soon as school was over, I receive the following text….I real miss u so much!  I replied to her saying that I miss her too but I will be home soon enough.  Also said we will Face Time later tonight and that I love her.  Her response and I quote…..Yeah!!!!!!

No matter the frustrations I go through with her, the attitude she projects as she becomes a tween and such how can I not love her unconditionally.  

Friday, October 10, 2014

Remember the fathers of sick children

I found this blog post on www.kevinmd.com, written around Father's Day 2014 and wanted to share as I was able to relate to all of it.

When I was a little girl, my dad was my hero. He was strong and brace, and it only took his presence to make me feel safe and secure. I thought he understood everything there was to know in the world. I believed he could solve any problem, slay any dragon, protect me from all harm.

That's the best thing about dads, really. You get that feeling settled deep down inside of you that lets you know you can rest easy because he's got you. He's never going to let you go. I guess it's probably one of the best things about being a dad, too. When you look at your child, you know that she really believes you hung the moon. And for her, you would.

Perhaps that's one of the reasons it's so hard for dads whose children suffer with serious illnesses. He is supposed to be the protector, the warrior who goes into battle unafraid. But when his child gets sick, in prevent the pain. He doesn't know how to fix it or makes it better. And he is afraid. 

It's a heavy burden these dads carry around every day. And yet, when a child is sick, Dad is probably the most overlooked of the family. We neglect to look a little deeper into his eyes, behind the tough exterior to see the broken man who is struggling and in pain. We don't know the questions to ask him, and he doesn't know how to share the grief so deep that it defies all explanation.

When kids get sick, we have a much better understanding of the traditional role that moms often take on as the primary caretaker, but dads tend to be less understood. Even though we live in an era where gender roles are much less defined in our families, sometimes the illness of a child forces us into them. One parent has to stay at the hospital with the sick child while the other goes to work each day to pay the bills, care for their other children, make meals and drive carpool. When families are forced to divide and conquer in this way, sometimes the roles dads serve are forgotten. Worse, we judge them without knowing the whole story.

For many dads, their struggle looks like this:

  • If Mom is in the hospital caring for the child, it is Dad who is shutting between two worlds -- the ones where nothing matters except the health of their child and the one where he has to pretend everything else matters.
  • When a child needs a full-time caretaker at home, often Mom fulfills that role. Dad is often working odd jobs and extra shifts to cover the mounting expenses.
  • Dads can feel like they are holding the family together by a thread, and they don't feel the freedom to express their pain. They family is depending on them to stay strong and carry on.
  • Sometimes, the most selfless thing a father does is step aside to the mother has the freedom to be the primary caretaker, although he wants to be by his child's side every moment of every day, too.
  • When Dad is a supportive caretaker instead of the primary one, he lives in the tension of being misunderstood. People don't understand that Dad still has to show up for work every day because he's used up his time off, and the family can't afford to be without a paycheck or health insurance.
  • He carries a silent shame knowing that he can't be the superhero his child thought he was. All he wants to do is take away the pain for his child, give him the cure, make everything right again. He is powerless to control the outcome, the fate of his child's life, and it terrifies him.
I think of how heavy these burdens must be, and my heart aches. I think of how much heavier it must be for those who are parenting in a single-parent household, and it aches even more. These dads (and the moms, too) are really living extraordinary lives and giving of themselves far more than our eyes can see.

On this Father's Day, take the time to remember these dads, the ones who have silently and selflessly given their all for their families. Look them in the eyes, give them a pat on the back, and tell them they are doing a good job.

They are doing the most important work of their lives. Make sure they know it.

Remember the mothers of sick children

I found this blog post on www.kevinmd.com, written around Mother's Day 2014 and wanted to share as I was able to relate to all of it.

"Motherhood is the hardest job you'll ever love."

I'm not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with serious illness.

Throughout my years of working at this hospital, I've had the privilege of knowing dozens of moms who find themselves within these walls fighting for the lives and wellbeing of their beloved children. We look at them and say things like, "I could never do what you do," and "I don't know how you manage it all."

But the truth is, they don't know how they manage to keep it together, either, it's just that they don't have a choice. They fight because their children need them to fight. They keep going because if they don't who will? They learn to put their own needs and wants aside because they value the life of their child much more than their own.

When children come face to face with the Goliaths of disease -- cancer, heart defects, cystic fibrosis, brain injuries and many more -- it's their mothers who gather the stones that this small child will use to fight the fearsome foe. We often revere the doctors who take care of these little ones, and it's true, they are heroes. They make the stones so that we have weapons with which to go into battle. But often, there is a forgotten hero: the mother who gathers each and every stone, places it into tiny hands, and stands by while her baby takes his best shot.

Mothers who take care of children with serious diseases don't have the same luxuries that the rest of us have. Every parent carries the nagging fears: What is something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?

But, for mothers whose children are healthy, we can put those fears on the back burner. We don't often have to look that scary monster in the eye and face the reality. We can hide our heads under the covers and pretend that as long as we can't see the monster, he can't come and get us. For mothers who are battling a child's illness, that's a luxury they cannot afford.

They are forced to face the monster head on, and their monsters look like this:

  • Explaining to a child why they must face yet another surgery that will bring incredible pain.
  • Holding frail little hands as they vomit and lose their hair and cry from the pain and frustration of chemo and explaining why the medicine seems so much worse than the disease.
  • Navigating the fine line between protecting the health of your medically fragile child and allowing them freedom to experience the joys of childhood.
  • Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have.
  • Cradling your baby in your arms as his worn-out body takes in his last breath.
  • Managing the guilt that you carry for so much of your time and energy being focused on your sick child, knowing that your well children need you, too.
  • Talking to your child about the reality of death, knowing that you would trade places with them in a second if you could. But instead, you're faced with the heart-wrenching task of letting them go on before you.
These are just some of the burdens that the mothers of sick children carry. They carry them around every single day, and the weight is heavier than you and I can possibly know. What is astonishing, though, about this thing called motherhood is that somehow, someway there is still incredible joy. Their pain is deep, but their joy, runs deep, too.

They are faced with the harsh, unfair realities so they've been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they'll appreciate every moment. Their child's illness has given them a higher calling, a purpose in life that is beyond any desire they've ever had. They know exactly what they're fighting for.

On this Mother's Day, look around at the mothers who are fighting for the lives and well-being of their children. Let them know you recognize that you can't possibly understand what it's like to walk in their shoes, but you know enough to appreciate every single step they take. Share in their hopes, their joys, their triumphs and their disappointments. Listen and learn: Their hard-won wisdom will take you far. 

But most of all, love them. Love them well because they have loved others well.

Sunday, September 28, 2014


Butterflies, what beautiful creatures. They have a unique quality about them, changing from caterpillar to butterfly. I have not thought about them much. 

The other day, our child life specialists, Beth, was at the house working with both kids. There activity for the day was to make a butterfly out of tissue paper and pipe cleaners. Beth always has a reason for her activities, the kids don't get that, but that is one reason she is so good. 

Sometimes, Beth will call me after her visits to fill me in. Which is what she did after this visit because it seemed to have a lot of meaning for Becca.  Beth told Becca that some people view butterflies as a symbol for transitions or soul. I have to say, I hate the fact that my 11 year-old has to have these conversations at all, but I love our team, along with Brian and I are doing everything we can to make sure her transition is as easy as it can be. I decided to look into the meaning behind butterflies ... there are many symbolic meanings associated with the butterfly. Different sites had different meanings.

Symbolic Butterfly Meanings
  • Time
  • Soul
  • Grace
  • Elegance
  • Expansion
  • Lightness
  • Surrender
  • Transition
  • Expression
  • Celebration
  • Resurrection
  • Vulnerability
While working with Becca, Beth explained that sometimes butterflies are considered as the souls of those who have passed away. What a wonderful way to look at it...looking at the whole process as a beautiful thing.

Another meaning...the butterfly symbolizes new life from the old one....this can be looked at in many different ways....for me I choose for this to be the new life we will have once has passed whenever that shall be...helping me to come to terms with our new "normal" at that time. 

When I started this particular blog, I was not sure where I was going with it, part of me is still not sure where I am going with it...but for now it is done....look at our beautiful butterflies.