Gabby the Great

GabriellaAge: 4 months
Weight at Birth: 11 ozs
Weeks Gestation: 22
Time spent in the NICU: still in the NICU

My Preemie Power Story: 

Hi my name is Gabriella some call me GG for Gabby the great. I was born on May 31, 2013 at 22 weeks weighing in at 11 ounces. My younger sister McKenly the Magnificent was born 30 minutes later at 12 ounces. My Mom had the nerve to have her cervix stitched up thinking she was going to hold us in there for nine months but my sister and I had said the devil is a lie get us out of here we have bad guys to fight!

But my sister decided the day after we were born that she would rather be my guardian angel in Heaven. Its nice to have someone upstairs helping you and telling you when to breathe when I forget sometimes.

My mom TuffTiff is one tuff cookie. She is there by me every single day. She has been there when I had to get my ostomy bag put on on her birthday which was also Father’s day because my bowel became perforated. Then I developed NEC. I had to be put into isolation. Yeah, those other babies are jealous of me because I have a nice room to myself and my own Nurse to watch over me. LOL

Then I developed ROP and had to have this needle stuck in my eye. Whew, that hurt but I am a fighter so I beat that too!!

Then I got 2 broken bones. My femur and my arm got broken when I was fighting off those bad guys. But hey, the docs try to say because I am a preemie, it happened. They just dont know how I have been running those bad guys off. lol.

I have finally made it up to 3 pounds and I can wear my super hero costume now. I was getting a little chilly there just wearing my diaper around. Then I hurt my feet so I have to have bandages on them for awhile. I will be glad when I get some shoes. This hero thing is alot of work!

I have 2 big sisters ages 20 and 11, and 1 big brother age 14. I even have a nephew that just turned 1 year old! My Mom and Dad said its been a roller coaster ride watching me beat up these bad guys in the NICU and they will be happy when I come home with them so I can teach them my tricks. They just don’t know that they will be up all night with me telling them all about my adventures. They might think that I am crying but really I will be talking to them. Well I hope you enjoyed my story as much as I have enjoyed telling it to you. Love, Gabby the Great!

Super Hero Characteristics:

A fighter, winner, never gives up!

J Baby

Juliahna ~ Super Hero Alias: J Baby

JuliahnaAge: 13 months
Weight at birth: 14 ozs
Weeks gestation: 25 weeks
Time in the NICU: 143 days

Diagnosis, surgeries, complications?

Underdeveloped bowels.
6 belly/bowel/intestine surgeries
1 heart surgery (PDA valve)
2 eye surgeries (ROP)

Second smallest to leave an Indiana NICU alive. Praise God!

Why Should Your Children Be Recognized as Preemies of the Year?

From the moment we found out we were expecting again (two miscarriages in 8 months) we knew Juliahna was our exception and God had plans bigger than we could dream of. Juliahna entered the world entirely too soon and had to fight for the first seven months of her life. There was never a guarantee she would survive. She fought day in and day out and never gave up. She only continued to show us her strength and God’s will. She endured several obstacles and 9 surgeries. She always smiled though, always! She was a fan favorite and many NICU doctors and nurses witnessed a true miracle with Juliahna. Even at birth, being as tiny as she was, she came out crying, swinging and ready to fight. She is now 13 months old- 12 pounds and has a personality way bigger than her body. She is the boss, always has been, and she is our hero. Her two older brothers adore her and she taught them a very valuable lesson so early on in life.

Using Three Or More Characteristics of a Super Hero, Please Describe Your Child

Determined- Juliahna doesn’t let her micro mini size hold her back. She moves and grooves like a healthy one year old should! We crawl and stand up on everything! She is determined to do what her brothers do!

Confident- Juliahna has no limits. She is adventurous and is confident with each new skill she develops. She shows her three therapists each week that she mastered the skill from the week before 🙂

Strong-willed- Having or capable of exerting power. Juliahna has always had a meaning/purpose. She has taught hundreds of people what it means to have faith and a strong will.

What advice do you have for future NICU parents?

Never give up on your faith and take one day, one second at a time. You will find strength that you never knew existed.

A Brotherly Bond

Enjoy his heartwarming video of two brothers Conner, 8,  and Cayden, 6, Long,  who compete in triathalons despite Cayden having cerebral palsy.  Tom Rinaldi of ESPN’s E:60 really captures big brother Conner’s voice and why competing with his young brother is so important to him.

Inclusion – Good for Everyone, Including Siblings

Brooklyn with her classmates

I know it’s only the beginning of July, but the return of my children to school for the 2011/2012 school year has been on my mind for a while (if I am being completely honest since March).  March was a huge month for our family because it was the month we were asked if we would consider keeping Brooklyn at her current school and allowing the school to put her in a “typical” kindergarten classroom for this coming year. When we talk about milestones in our family, this was a milestone of gargantuan proportion. We were so excited about the opportunity that was presented, but anxious about what this next step would mean.

Inclusion is a welcomed word in the lives of families of children with special health and developmental needs. For me, giving Brooklyn every opportunity that she would otherwise have if she did not have CP is a primary goal. Brooklyn is a child first and foremost. She has physical limits, but she is still a child and needs to experience life as such. We have watched her grow this last year and she has loved every single day in school,every social interaction she has been given, and every chance to laugh, play and participate in activitites with her friends. Being in an all day classroom environment provides for this and so much more. Inclusion is not the answer for all families and depending on the needs of each child inclusion might not be an option, but if it is an option why not welcome and demand it?

Oddly enough, during the same exact month that we were given this choice, Austin Family Magazine published an article titled, “The Spirit of Inclusion. Embracing Special Needs Kids in the Classroom.” I know it sounds cliche, but I am a believer in everything happening for a reason and the timing of this in my opinion was absolute divine intervention.  Jennifer VanBuren does an excellent job focusing on the benefits that come from inclusion, not just for our children with special needs, but for all of the “typical” developing children that are lucky enough to experience this in the classroom.

My stance on inclusion has always been the more we can integrate Brooklyn into “normal” life the better for her and for our entire family. Reading Ms. VanBuren’s comments on the powerful molding that takes place in the lives of the other children in the classroom validates this even more. For Cameron (our typical) seven year old son and Brooklyn’s older sibling, the rewards are two-fold. Not only does he reap the rewards that come from having children like Brooklyn in his classroom, but acceptance, tolerance, kindness and equality are being learned by his peers making his journey with Brooklyn a little bit easier to navigate.

Of the numerous benefits the typical children in our schools (including our typical siblings) will receive, Jennifer VanBuren writes, “meaningful friendships, increased appreciation of individual differences, respect for all people, preparation for an adult life in an inclusive society, opportunitites to master activities by practicing and teaching others and greater academic outcomes” are at the top.  Isn’t this what we would hope all of our children to achieve during their school years as we work so hard to help them become successful, balanced and happy individuals? I would want these things for Cameron regardless of inclusion, so the fact that inclusion increases the chances that he will develop such postive character traits is reason enough to want this experience for him.

VanBuren writes, “ parents of non-disabled children may not fully understand the challenges families face or how much the smallest gesture is appreciated. One year a room mom innocently forgot a child’s name on the classroom Valentine’s list because he was not on the official roster. One little girl noticed and told her mother ‘we have to make one for Justin, he is part of our class too.'” What a heartfelt moment for any mother, and what a beautiful thing to see the care and concern of one child towards another.  As Vanburen would state “now that is the spirit of inclusion.”

This article touched me and confirmed the decision we had made to push forward with the regular kindergarten classroom for Brooklyn this coming school year. I believe in inclusion and I believe in my daughter. As soon as  I finished reading the article I immediately sent the link to the entire team that will be working with Brooklyn this coming school year, including the principal of the school she will be attending. We will be using this article during kinder camp next month as we introduce inclusion to the entire kindergarten class, their families and the kindergarten team of teachers.

I am excited to see where this opportunity will lead and the magic that is guaranteed to happen at Brooklyn’s school as those who interact with her are touched by the magnificent and smart little girl that she is. I am just as excited to see the road that will be paved for Cameron as the school community and beyond recognizes that the only thing that “disables” children like Brooklyn is ignorance. The sky is the limit for all of our children and Brooklyn is no exception.

Note: Permission to republish parts of this article was received from the editor of Austin Family Magazine.

“Ignoring” Typical Developing Siblings

A Hand to Hold friend and supporter sent me the link to a blog entry responding to an article that was  published as the cover story for the New York Times Journal this past weekend. Just another reminder that raising a typical developing child while also raising a child/children who have extra needs is extremely challenging. Please read below and share your ideas with us.

Ignoring ‘Typical’ Siblings

By LISA BELKIN

The cover story of The New York Times Magazine this weekend (you can read it online here) is a riveting look at two 4-year-old girls — conjoined twins — who seem able to feel each other’s sensations and read each other’s thoughts. It is fascinating science. It is also a thought-provoking parenting story.

How to raise children who are so different, in a home where three other siblings have needs too? That question is writ large for the family of Krista and Tatiana Hogan, and faced every day by parents where one child is disabled, or ill, or particularly talented or depressed, or in need of extra attention for whatever reason.

As my colleague Susan Dominus writes of the five days she spent with the family:

Rosa (the girls’ 8-year-old sister) paused for a moment … then changed the subject (from something the twins had just done) to tell me about the part she had in a school show, playing “the nerd sheep.” Just once, could a visitor’s attention be directed at her own extraordinary role in the world?

At first, the sight of their younger sister, (3-year-old) Shaylee, walking freely past the girls, struck me as painful, a constant reminder of their own constraints, her liberty a moment-by-moment assertion of superiority. But over time, my sympathies switched: the twins’ unity was so strong I wondered if Shaylee felt she was somehow missing an essential part of herself. When the girls wanted to wash their hands in the sink, they worked as one, silently, to drag the bench over to the bathroom. More often than not, they both seemed to want to slither like snakes at the same moment, to roll a ball down a ramp to the television room, to drift toward the electric piano. But acceptance, rather than mutual desire, might be at play: the family often reminds them they have no choice but to compromise, and Simms believes they have a private logic for determining whose turn it is to decide their whereabouts.

The way this family handles the differences, it would seem, is by allowing them to merge with the surrounding chaos. Living in the British Columbia tract house with Tatiana and Krista are their mother, 25-year-old Felicia Simms, their older and younger sisters, their 6-year-old brother, their maternal grandparents, three cousins, an aunt and uncle, and their father, who seems to come and go. Dominus writes:

Simms has always appreciated what she characterizes as her mother’s easygoing ways. It was Louise who paid for her first facial piercing, at age 12, and who accepted the news easily when she learned her daughter was pregnant three years later. “We were never normal,” Simms says, and “that was O.K.” She thinks that in some ways it was easier for her family to accept the idea of conjoined twins than it might have been for a family that was more conventional. They did not have to reinvent their sense of themselves, the image they presented to the world. “In my house growing up, everything didn’t have to be perfect,” she said. “I never had to be like everybody else, look like everybody else.”

Unless the twins are having a rare health crisis or are being followed by video cameras (the National Geographic Channel showed a documentary about them last year), they are part of the general background din of the house and a far less dominant issue than the pressing financial concerns. The adults of the family tend to congregate around the long dining-room table, where the girls’ grandmother runs both a delivery business and the household — directing drivers, calling out to the twins to stop teasing their little sister and planning dinner for everyone.

It works for them. What works for you? How do you raise a child who is different while still giving attention to their siblings?

Please share your ideas with us.

Sibling Discussion Re-Cap

On Sunday May 15, twenty parents joined five panelists from the Austin community to discuss the unique challenges that siblings in families of children with special health and developmental needs face and to offer ideas to parents on how to support the needs of all the children in our families the best.

           

I was excited about this event both professionally and personally.  So many of my questions and concerns regarding my worries with my son Cameron were addressed and the connection I felt to all of the parents in the room was so strong. It doesn’t take much to make me feel connected to other moms who are walking down the same road I am with Brooklyn and with Cameron and being in a room with these women brings a certain amount of comfort and peace and the sense of knowing that they all “get it”. There is no judgement involved in what you say or express because everyone in the room has felt the same way at one point in time.

The panelists were wonderful and really took the time to answer the questions thoughtfully and thoroughly.  They talked to the audience about the common concerns faced by parents in this population, the developmental stages of grief and coping, communication with children, sibling rivalry and discipline as well as various ideas for helping children express emotion.

It was so comforting to hear the panelists talk about the most common concerns that parents like me face. I often wonder if I worry about things I shouldn’t be, or if other moms like me face the same daily struggles and hearing my concerns validated brought me peace. Among the many concerns parents face, the top triggers seem to be  balancing time between children, worrying if all of their children will fit in and planning for an uncertain future.  We learned that our “typical” developing children have many unique concerns as siblings, but that they also share all of the concerns that we as parents have as well. Panelists stressed that the most effective way to support the siblings in our families is to take the time to be there and to really LISTEN to what they are saying.

The discussion about the developmental stages of grief and coping was great. One false assumption by many people in society is that children do not grieve. Children of all ages grieve, it just looks different at each stage of development. For siblings of children with special health care needs  there is often this idea that they caused their brother or sister’s disability or that they might “catch” what their brother or sister has. Panelists shared that for this population, honest communication between parent and child is necessary. Panelist Khris Ford shared that for thirty years she believed that the death of her sibling was her fault because no one in the family talked openly about the death. Hearing stories like this is powerful and emphasizes the need for open and honest family communication.

I have struggled with sibling rivalry and discipline with my own children. We have found it hard to explain to Cameron why we don’t put Brooklyn in time-outs when she is biting or having a  tantrum. To Cameron (who is only 7) this is a big deal because his form of discipline when he was younger was sitting on the stairs for a time-out. He often

complains that this kind of thing is “not fair”. I have also struggled with the belief that every time Cameron acts it is the result of having  a sister with a disability. I guess I want to “blame” his misbehavior on the experience. The panelists reminded parents that these siblings, even though they have extraordinary life circumstances are just still “kids” and unwanted behavior is a part of being a kid. They stressed that as parents we need to deal with the symptoms and worry less about trying to figure out if what we are seeing is a “sibling” issue. Sibling rivalry happens in every family regardless of the needs of the individual children and all children need support because being a kid is tough.

The end of the discussion brought many suggestions for ways we can support our “typical” developing children best. Panelists suggested that we start with giving our children appropriate control, avenues for expression (such as art, music or journaling) and MANY opportunitites to meet other children socially who have similar life experiences.

Parent Concerns

Although our experiences are all just as different as our children, there is a common thread that filters through the emotional journey of parents with children who have special devlopmental and health care needs. We all, regardless of our journey feel the same kinds of emotion and worry and those feelings are compounded when you factor in needing to support any additional “typical” developing siblings at home. Parents have many different concerns related to siblings but mixed among concerns of each individual family are very specific concerns that are heard time and time again. Dr. Scott L. Barkin from the Block Institute in Brooklyn New York writes that  the concerns of parents of special needs children with typically developing siblings almost always include

* As a parent, am I giving each of my children all the attention they need and desire, or am I neglecting my “typically” developing child?

* Will my typically developing child have to make many sacrifices?

* Will my children develop a relationship and will they play together?

* Will my typically developing child become resentful?

We may never be able to answer these questions and as a parent of a child with special needs and a typically developing child, I know that I have and always will wonder about these things. One of the greatest pieces of information I ever read regarding the issue of balancing time between all of your children is this-

Don’t focus on the amount of time being spent with your child, invest in the process of who the child is. Every child needs to believe they are understood, appreciated, regarded and acknowledged. What each child requires is to feel that he/she is different.

Although I don’t remember where I read this or who actually said it, it speaks volumes. I have used a phrase for some time now with my son when he tells me that things are just not fair. I always tell him things are fair they are just not equal. Being fair is all about getting what you need. This filters right into the issue of time spent with each child and being able to let go of the idea that every child needs the same amount of time from each parent. Just as my children each require specific needs in life, they each require a different amount of my time in order to feel that they are special and different.

Developmental Understanding/Coping

Developmental Understanding

Helping children cope with life changes and difficult circumstances is best done when we understand the development of children. As children grow, their understanding and their reactions change to having a sibling with health care needs.

6-12 Months (Older Infants)

During this stage of development there is an increase in separation and stranger anxiety. Babies may express their feelings through increased crying or clinginess.

1-3 year olds (toddlers)

During this stage of development children are extremely perceptive and can pick up on the stress of those around them. They have very limited language skills and will use regression as a coping mechanism. This is not a good time to introduce new skills such as potty training.

3 to 5 year olds (Preschool)

During this stage of development, children are unable to adequately express their feelings verbally and are likely to express them through behavior. They are not able to understand the special needs of their siblings, but they will start to notice differences. This is the literal stage of language development and children will use both regression and attention seeking behaviors to cope with stressful situations.

5-10 years old (school-age)

During this stage of development children become acutely aware of differences.  It is the concrete stage of cognitive development and explanations can be understood in proper terms.  They might worry is the disability or illness is contagious or if something is wrong with them to. They may feel guilty about having negative thoughts or feelings about the sibling as well as guilty about being healthy or not having a disability. Some children at this age become overly helpful and well-behaved while others become non-compliant to get attention.

10-13 years old (pre-teen siblings)

Privacy is extremely important to children in this stage of development and they are extremely perceptive. They might struggle with increased responsibilities or might want to assume more responsibility than they should to keep additional stress away from the family. Social networks are very important and may wonder how their social life may be affected by their sibling’s disability or illness. They may experience embarrassment surrounding their sibling and they may worry about their sibling’s future as well as their own.

13-18 years old (adolescents)

Teenagers are capable of understanding more in depth explanations of the disability and may ask detailed and searching questions and want their opinions and thoughts to be valued/viewed as important. Social networks are very important and they may wonder how their social life if affected and where they fit in. Since conformity is important, they may feel embarrassed about having a sibling who is different.  They may resent an extra responsibility and worry about their sibling’s future or theirs.

How Does A Parent Answer Tough Questions

Becoming a parent does not mean that you automatically have all the answers. As any parent of a child with special needs knows, a diagnosis does not come with a label that reads handbook attached.  One of my biggest concerns surrounding Brooklyn’s diagnosis has always been the fear of questions and of not knowing how answer them, and the thought of Cameron (brooklyn’s brother) asking me to explain things that I sometimes don’t even understand myself is terrifying. I begin each day with a simple prayer asking God to lead me through the day and to provide me with insight should I find myself in a situation that I just don’t think I can handle. I have played all kinds of scenarios in my head and have rehearsed what I would say if and when the questions come.  Rehearsing what you might say to an adult is definitely different than the answers you would give to a child and especially when that child is your own. How much information is needed and how much can a child at seven really handle? The teacher in me has read almost every book out there on the subject and the parent in me has read almost every single blog or website I can find. The graduate student in me has focused on this as a part of my research and the parent in me has done everything I know how to do just to be prepared.

The funny thing is that every question from Cameron has been the result not of me and of my desire to share and help him understand, it has come from him. Cameron asks me questions in his own time and in his own way, and the fear that seems to have a firm grip on my body at the very thought of handling myself in the right manner and with the right words is replaced with love, with honesty and with genuine conversation. When Cameron asks me questions the conversation is natural and the words just flow.  Cameron has taught me that kids just have this amazing ability to let adults know what they need at exactly the time that they need it the most.

Of course I am making this sound a lot easier said than done and having a conversation with your child (regardless of the age) about why your other child/children can’t walk, talk, or play is one of the most heartbreaking and hardest things to do. Hearing your child tell you that his/her friends at school are making fun of him/her or of his/her sibling rips your heart out of your chest and I am not sure that even after you have had that conversation for the 100th time it will ever get any easier or hurt any less.

What I do know is that as the parent of children both typical developing and “non-typical”, I can’t ignore it and I can’t pretend like those conversations will not be had. The fact of the matter is as much as we want to make it all go away (and trust me I do) I have a responsibility to provide my son Cameron with the tools and the information he needs to understand his sister, to deal with society and to appreciate our unique family experience.

Don Meyer (founder of Sibshops) questioned brothers and sisters of children with special health and developmental needs about what they need and want others to know.  With a list of 20+ things (which I hope to write about in a later post) a few really stuck out.  Siblings want LOTS of opportunities to obtain INFORMATION, to LEARN more about thier sibling’s life and COMMUNICATION.  Three key concepts all parents need to know in order to best support the needs of the siblings in thier families. As mentioned, the list was long and a different post will be dedicated to the exploration of this further, but I felt the need to mention these three things first in order to begin conversation about how tough questions are answered. I will reitterate that we don’t have to know the answers, but our typical developing children want to know that at least we are trying, that we are willing to share the information we DO know and Do have with them and that we are there to listen.

As a parent we must always remember that we need to be honest, but we need to provide informaiton that is developmentally appropriate. Next week’s post will focus on developmental stages of coping (what children can understand and deal with at different ages). I sometimes struggle with how to be honest with my children while at the same time making sure the information I give them is something they can process and understand. I picked up a phrase from a friend of mine recently who has been going through a tough divorce. She told me that she handles this by telling her children that she will always be honest with them but that she will never tell them information that is not appropriate. I really liked this phrase and have started using it with Cameron. On a side note- it works well in any situation (especially when my husband and I are trying to have a conversation and little ears are listening and asking us questions about what we are saying and talking about).

I want to close this post with this- we are parents but we are human. We place way to many expectations on who we are are parents and shame ourselves when we make mistakes. We are human and our children need to see this.  They need to know when we have the answers and when we don’t. They need to see us laugh, but they also need to see us cry. They need to see us fall but also see us pick ourselves back up and try again. They need us to be honest, but they need us to protect their innocence. They need to know that they world is full of challenges but that it is also full of blessings.

Raising children is tough and the challenges we as parents of children with special needs face daily can sometimes seem unbearable.  But if we give the best we can give each and every day and know that in the process we are going to make mistakes and wish we would have handled situations differently

 

Perfectly Imperfect (My story)

Life is funny. It can change in the blink of an eye and the world  that you have pictured as perfect can suddently become imperfect, or so it seems. Life is a journey and you never know where your path may lead. Sometimes the most unexpected places you pass along the road of life are among the greatest blessings.

It was a Wednesday morning back in February  of 2006 when I found out that the second child I was carrying was a girl. At that moment in time it felt as though our family was going to be complete and the dream of having a son and a daughter was becoming my reality. The next four months were filled with eager anticipation as I envisioned every little detail of our soon to be family of four, planning the places we would go and the things we would do together. Many a dream was had about the relationship that would evolve between my son Cameron (who was two at the time) and his little sister (to be named Brooklyn). I pictured the countless hours that would be spent making memories in our home while hearing my children playing, reading with each other, talking, arguing and many other very typical sibling things. This was my idea of the perfect family.

Little did I know that four short months after we had given a name to the baby girl I was carrying that my vision of the perfect family would be shattered and a journey filled with paths of difficult and sometimes what would seem to be unbearable challenges would begin. Little did I know that the journey being laid out would also be blessed with the kind of hope, courage, strength and faith that before would have seemed completely our of reach.

Our daughter Brooklyn came barreling into our lives one sunny Friday morning in June, six weeks earlier than expected. Born with a fighting spirit, Brooklyn was determined to meet every challenge she faced during her month long stay in the hospital NICU. Learning how to breathe on her own, how to eat and how to adjust to a world outside the womb that her body was not prepared to enter were just a few of her NICU tasks. Living in what seemed to be a fog, days and nights seemd to blend together as my time was split between the hospital and my home where I tried to make sure that my son Cameron was taken care of and that as normal of a routine as possible was maintained. Life was overwhelming to say the least and the guilt I was experiencing as a result of either being at the hospital or at home, but never being with both of my children at the same time was excruciating.

In one short month, I learned more than I ever dreamed or ever wanted to know about preemies. So many days I wished for an off button to shut out the sounds of the monitors, the cries from the infants and the conversations between the hospital staff and other parents that filled my head eight hours every single day. In these moments my thoughts would shift back and forth between Brooklyn and Cameron. How I wished that I could reverse time somehow and change our newfound reality. I wondered if Cameron thought that he had been abandoned or if his mommy loved him anymore because I wasn’t at home to play with him and participate in our daily routines together the way we had for the last two years. Many a tear was shed because my son’s life had been turned upside down.

Our NICU journey was only the beginning of what would be the most challenging family experience yet. On January 30, 2006 exactly six months after Brooklyn’s unexpected early arrival, our family received a diagnosis that would forever change our world. We learned that Brooklyn had suffered from a lack of oxygen to the brain at some point during my pregnancy causing a significant amount of damage resulting in not only her premature birth, but also a disorder known as Cerebral Palsy. As I struggled to understand and accept what we were facing I realized that not only was my world being impacted, but that our son’s world was and would forever be changed as a result.

It is often said that a situation such as this changes people positively or negatively, but that no one ever remains the same. I decided that regardless of my journey I was going to do everything in my control to make sure that Cameron would end up on the positive side of that change and that our family would remain strong. At that point I dedicated myself to learning how to best help and support my daughter, and to begin a graduate program that would give me the tools I needed to support my son Cameron and other siblings facing similar situations.

I would do anything to take away my daughter’s struggles, to give her the ability to speak and to rid my family of the many challenges that have and will continue to come from our travels down a very uncertain and unexpected road, but I would never change the personal transformation that has occured. My healing, learning, growth, passion, drive and dedication have come from watching Brooklyn’s determination to defy the odds and from my son Cameron and the promise I made to myself to make sure that he always knows he is loved, important and special, too!

Life is a journey and you never know where your path may lead. Sometimes the unexpected places we end up passing are among the greatest blessings. The journey I have encountered as a result of Brookyn’s condition has been unexpected, but has brought with it some of the greatest rewards. I continue to embrace my role as Brooklyn’s mom, and as a family we continue to grow, love, learn and redefine who we are among the “typical” American families of today.

Site last updated March 21, 2017 @ 2:17 pm