Friday, October 31, 2014

Happy Halloween

For those who really know will love this card as much as he did....he laughed and loved it....thank you Nurse Erin for making him laugh and taking wonderful care of our family and Ian. 

The kids had a great time trick or treating. 

Thursday, October 30, 2014

Siblings of Kids with Chronic Illneses

Earlier this week I had the opportunity to speak to a group of social workers at Johns Hopkins on siblings of kids with chronic illnesses. A chronic Illness is a life-changing event, not just for the sick child but for the entire family. The chronic illness poses a number of challenges to the whole family. In many cases the illness itself becomes the main factor of the family life...even if you try for it not to. It becomes the most popular topic of conversation (we have people call our home, "how's Ian" and that is the topic and the entire conversation...yes Becca picks up on this), the most important thing on the schedule and the major expense. This often leads to schedule changes, routine changes and sometimes just disturbing the overall sense of normalcy for the family (whatever that normalcy is). Helping the healthy child understand this is difficult...factors such as the chronic illness and age of the healthy child come into play.

Siblings face challenges associated with chronic illness of a child within their family. They often "find their lives are constantly interrupted by medical emergencies that trump well kid cares. -Leah Vanderwerp College of Arts and Science We have seen this happen with Becca quite a few times, even though we do our best for it not to happen. When we know of an event on Becca's schedule and things are going on with Ian we have turned to many to get her to that event and to try to keep her life as "normal" as possible. Some of these challenges include the shift in parental attention toward the sick child, the complication of the sibling relationship and rivalry, and potentially even a period of separation from one or both parents and the sick sibling. -Leah Vanderwerp College of Arts and Science Over the years and throughout Ian's numerous hospitalizations, we have developed a way of making sure that every night one of us sleeps at the hospital and the other one sleeps at home with Becca, getting her ready for her next day and to where ever she needs to be. Through advancement in technology the kids skype every night when Ian is in the hospital so they can check in on each other, making sure to give each other kisses good night and telling each other to sleep well.

As a result of these household changes, siblings may face a relationship based more on caregiving than mutual companionship. In the wake of a parent or sibling's absence, other children are often forced to step up and fill the vacated household roles. -Leah Vanderwerp College of Arts and Science The above are things that Brian and I have tried very hard to not do. We try to remember that Becca is still a child and it is not her responsibility to care for Ian. There are times we will ask for help and do remind her that caring for each other is part of being a family, however, due to our unique situation we try to remember that she is the sister, the twin sister for that matter. She does have chores that are age appropriate, and will get punished for not doing them or for having the typical "pre-teen" attitude. 

The healthy child may have feelings of guilt, become annoyed with the ill child because of all the attention they are getting...yes Becca does get annoyed because of this. They have to learn to speak frankly about tough issues at a young age like having a conversation with your 11 year old (both of them) about dying. Talking with Becca about what would happen if we did not trache Ian when we did, having a conversation with her regarding her brothers funeral and letting her know that we have planned it so when the time comes we can take care of each other and not have to worry about that part of it. Having a conversation with Ian, about heaven and letting him know that all of his body parts that no longer work are waiting for him along with other family members who have already passed on are there to meet him. Watching Becca earn her first aide badge with Girl Scouts...they had an ambulance come to work with the girls...watching her look at all the equipment and saying, "there's a suction machine, there's an ambu bag, there's an oxygen tank...etc" Very heartbreaking to hear your then 9 year old know what all of those pieces of equipment are plus how they work. 

Trying to establish some balance between the needs of your ill child and those of your other children is difficult. Some things we have done to do this are to make sure we have one on one time with both kids...we have told Becca if she feels she needs mommy or daddy time then she needs to tell us. We have been open and honest with her as best as we can at her level regarding Ian...after all she lives it in a different way then Brian and I do. She deserves to have her questions listened to and answered.

Some of the things I shared with the social workers are making sure to remind the family that they have other children besides the sick one and those children are going to need them as well. Reminding them that the parents need to take care of themselves as if taking care of parents is as important as taking care of the child because the parents need to be healthy (emotionally, physically, spiritually) in order to help the kids. No we don't practice all of would be nice. Helping the family to get resources in the community not for just when the ill child is in the hospital. For us, we are always in crisis mode and believe it or not, we have crisis mode of when Ian is in the hospital down to a science. It is the crisis mode of him being home that is harder to manage sometimes. The resources are not always least for us given his rare disease. We do have many resources in place and those we have in place are wonderful but there are definite times when more is needed.

I found this in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability

* Assess the family system, determining from healthy children their responses to the complex medical problems of their sisters and brothers. Identify from the assessment sources of strength and stress. Ask parents about the family constellation, support systems, and child care arrangements. Engage parents and children in a discussion about roles, responsibilities, and relationships of all family members. Explore with them family strengths and needs. Determine how children have been informed about the medical situation of their sibling and elicit parental perceptions of how well they have adjusted to it.
* Identify available resources within the family, school, and community.
* Craft the resources into a network that involves but is not limited to a mobilization of social supports. The use of on-line discussion lists and focused chat rooms has become a powerful means of sustenance for parents and children, both of whom gain access though this communication medium to age-mates dealing with similar issues. Parents may need help in understanding the concerns of their healthy children; therefore, nursing strategies should be designed to enhance parental coping as well as sibling support.
* Collaborate with other health professionals to maximize the use of concrete resources. Social workers might provide parents and children with vouchers for public transportation or with access to useful service agencies. Heed the advice of children who have "been in the web."

The following "shoulds," suggested by siblings, have been demonstrated to be effective supports (Itzkowitz, 1991). Siblings should:
1. Be treated as children, not as supplementary adult caretakers.
2. Not assume responsibilities beyond their preparation or maturity.
3. Be encouraged to express their feelings openly.
4. Have their questions answered in an age-appropriate manner.
5. Be involved in discussions and decisions involving family matters, particularly those that personally affect them.
6. Feel that their reactions and opinions are valued.
(Fleitas, 1998).

Lessons have been learned...this was also found in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability. Some of these things Becca has verbalized in different ways and I hope as time goes on she will continue to verbalize them and see more.

One teen pondered her life as the sister of a child with a progressively fatal neurologic disease, and conveyed a number of positive themes in her message. "Living and loving...has taught me so many things. I've learned how to be patient, understanding, and caring. How to love fully. I've learned to take time for the little things in life, like looking at the trees and watching the leaves blow." She continued, "To my amazement, I love the life I have because of him...I would never trade it in for anything else! I learned that when in life we're faced with challenges, we should deal with them the best way we can, we should take time out for ourselves, and we should never give up!"

The path to maturity is slippery, yet this teen travels it with certainty. She attributes her values to the lessons she's learned from her brother. "...the other day, perfect example, this girl in my class is complaining that nothing ever works out right for her. She whines because she has bad hair days one after another. And I'm like, 'Hello, get a life,' my brother is so brave with his trache and his wheelchair; he teaches me that what's important is kindness and courage and laughter. Never thought I'd get to a point where I'd say laughter, but I think that's how we all survive in my family."

I did not plan my talk, I just got up there and shared our journey and started speaking....I hope they gained as much as I did.

Wednesday, October 29, 2014

Making Memories

Since Ian has not been going to school anymore and a teacher is coming to the house we have been able to go out a little bit more. It seems he has a little bit more energy on the weekends. so we try to venture out. A few weekends ago, Toys R Us had a free Lego building Batman lite. It really was little but we did not know what to expect, it didn't matter because the kids had a great time. And they each got to pick out something new from you know they really had a good time. 

That same weekend we went glassblowing. It was amazing and something we got to do together.  Brian and Ian each made a paperweight. Becca made a flower.  I made a ring holder. And together we made a vase. Learning something new and watching how everything is done along with watching the professionals make other things was amazing. These are treasures we will always have. 

Monday, October 27, 2014


Ian said he was sad, didn't know why but needed a hug from everyone in the house including Joey (she is 15)

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 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 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, 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, 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.