Hand to Hold's Official Blog: Written by Parents for Parents

For the Love of Cameron

Cameron and Brooklyn Today

Some things in life just never go as planned, even the expectations we have for the siblings in our family.  Growing up with a sister of my own, I am all to familiar with the “we are like night and day” scenario that many siblings speak of when talking about their relationship.  Even though my sister and I couldn’t be more different, there has always been comfort and security woven into the fabric of my life knowing that she and I have each other.  Naturally, when my husband and I decided to have children, God-willing, we decided to have two in hopes that our children would experience that same thing.  Not long after our first-born, Cameron, turned 18 months, we found out we were expecting our second bundle of joy.  The excitement, the plans and the visions of my two children playing consumed my every thought.

Brooklyn was born at 33 weeks gestation and was diagnosed with cerebral palsy six months later and our son was just shy of 2-1/2 years of age when we received the diagnosis.  The experience of having a premature child and then hearing the news that your child will have life-long challenges is overwhelming and traumatic, at minimum.  I remember the constant guilt felt and the overwhelming ache in my heart that developed as a result of feeling as though I was choosing one child over another.  Whether I was at the NICU with Brooklyn or at home spending time with Cameron, I thought I needed to be doing the opposite.  The task of trying to explain to my toddler why things were happening the way that they were still brings tears to my eyes.

After we “graduated” from the NICU we proceeded to face our biggest challenge.  Life with a premature infant was not easy and our world revolved around maintaining Brooklyn’s health and well-being, which left us feeling as though Cameron’s needs were being neglected.  When Brooklyn turned six months, our worst fears were confirmed; she was diagnosed with cerebral palsy and our journey to re-define who we were as a family,in addition to what the sibling relationship between Brooklyn and Cameron would look like, began.

Along with the task of accepting and learning how to face the new life we had been given with our daughter, my husband and I had this incredible task and requirement as parents to figure out how to best provide support for and maintain balance in our son’s life.  Six years later we are still trying to figure that out.

Our journey with Brooklyn has changed my life in so many ways.  I have been blessed beyond measure.  The moment Brooklyn was diagnosed my life changed.  As a former elementary school teacher with no plans of ever doing anything other than teaching, I decided to go back to school to pursue a degree in Family and Child Studies.  I want to focus on non-profit work and specifically on the sibling population.  My journey is tough, as is every parent who is given the precious gift and responsibility of raising a child with special and unique needs.  For those that have additional children in the mix, the task is even more challenging.  My passion for sibling support is the direct result of watching my son’s journey over the last six years and my dedication to making sure that he is impacted by his sibling’s disability in the best way possible.

Laura Romero About Laura Romero

Laura Romero (TX) is the mother of two children, including a daughter who was born at 33 weeks and diagnosed with cerebral palsy at six months of age. She spent a little over a month in the NICU. Laura is a passionate advocate for children with disabilities and for the support of the siblings of these children. She is currently a Family and Sibling Support Navigator and Helping Hand Volunteer Program Coordinator for Hand to Hold, a national NICU family support nonprofit.

Comments

  1. I constantly question and analyze how my daughter’s special needs impact her older sister, also 6 years old. The truth is, because I only have the 2 of them, my older doesn’t know any different. Her “big sister”experience started with a baby who lived in the hospital for 5 months, then had surgery, and still has lots of therapies and appointments. She has recently started asking more questions, noticing that her friend’s younger siblings are much bigger than her sister, not as fragile. I am proud to say that the sisters couldn’t be closer, and want to be with each other all the time. Still, it is something that is always in my mind.

    • Laura RomeroLaura Romero says:

      Melissa,

      Thank you for commenting. I think that the sibling issues are a common struggle for every family blessed by the arrival of not only a premature baby but of our extra special little ones. I am not sure that those in this situation ever stop questioning how the experience of having a child with extra special needs impacts any additional children in the family. My son asks lots of questions and is very aware that his sister is “different”, but we try hard to answer him honestly, provide age approriate information and to always keep the communication going. It sounds like you do the same and that your children already benefit from your own family experience.

  2. I often wondered how I would have managed to take care of other children when my 28 week-er was born. It was hard enough keeping up with the house, our dogs, and staying in touch with students (I’m a professor and was on leave, but still had obligations to upper level students). I thought it would be easier when our daughter got out of the NICU, but as you suggested in this essay, life outside the NICU is quite hard as well. I commend preemie parents who have the additional responsibility of raising other children, and I imagine that although you don’t feel like the balance was always there, you did an exceptional job. Good luck with your new degree!

    • Laura RomeroLaura Romero says:

      Andrea,

      Thank you for commenting. There is no question that the birth of a premature infant, regardless of whether a family has additional children at home or not is overwhelming at minimum. I think that it is such an unexpected experience and especially frightening for parents who are experiencing birth for the first time. Having siblings at home is difficult, but somehow you manage to push through and to do the best job you know how at the time. You would be surprised at what you can handle! Thank you for your kind words regarding my degree and my job as a mom to both of my children. My children definitely inspire me to be a better person and mom.

  3. Katrinna says:

    I know the challages you go through because i have a daughter who was 7 and then came along my son born @ 28 weeks and he was in the hospital for four months and he also has cerbal palsey.. It is a challege everyday but without the grace of God i don’t think i could do it..Please i could use any sugestion people have to help me have equal time with both and not leave out one of them..

    • Laura RomeroLaura Romero says:

      Katrinna,

      Thank you for commenting. Balance is definitely an ongoing struggle for me and I am sure for everyone that faces the challenges that we do on a daily basis. I am happy to share some of the things that have worked for our family. Please send me your email and I am happy to correspond. Lauradromero@gmail.com

  4. It is an incredible task to provide balance and support to the siblings of special needs children. I know more often than not I’ve felt like I’ve failed one or all of them. There have been those rays of hope though that show that sometimes we get it right and all three (Caleb plus his two older sisters) will be okay. It’s good to know we’re not the only ones trying to figure it all out.

    • Laura RomeroLaura Romero says:

      Bea,

      Thank you for commenting. You are absolutely right- the task of making sure all of our children are getting what they need and deserve is monumental when you have a child that consumes much of your time and energy daily. I think we all learn to handle each day as it comes and do the best job we can. I think every parent struggles with this issue on some level, it is just magnified for those with children who have so many additional needs. One thing I know for sure is that our “typical” children will have so many great qualities as adults because of their experiences growing up with an extra special sibling. I think half the battle is for parents to be aware of this struggle.

  5. Thank you for this wonderful peek into the life of balancing the very different needs of your children. I am inspired by your drive to make things better for other families!

  6. Laura, what I love most is how you care for both your children – in such unique and special ways. They are blessed to call you “Mom”. Thanks for sharing!

    • Laura RomeroLaura Romero says:

      Kathryn,

      Thank you! You just brought an extra big smile to my face. I am very blessed to call Cameron and Brooklyn my children. They have taught me many things and I anticipate will continue to as they grow. Thanks for being so supportive and encouraging!

  7. Such an inspirational article from such an amazing woman!

    It truly is a monumental task trying to divide your time with your children. I know you can always play with kids together, but each needs their own time with mom. Top that with housework, husband time, personal time, meals, sleep, etc…and there is a definite lack of hours in the day.

    We were blessed in 2010 with a preemie born at 29 weeks after 8 weeks of bed rest following a preterm premature rupture of membranes (pPROM). The bed rest was bad enough. I felt like all I did was watch movies with my kids or send them off to play with dad or grandma. And then when their baby brother was born, I spent my days with them and as many hours at night with him as I could. I was desperately pumping, hoping to be able to breastfeed when he was big enough and blogging to keep everyone in the loop. I was exhausted beyond anything I have ever felt in my life.

    And then my son ended up coming home with a trach after 4 months in the NICU. You would have thought I never disciplined my older kids (ages 3 and 2-year-old twins at the time). They craved attention so badly but their little brother’s life depended on me being able to give him the medications he needed and suctioning the trach, day and night.

    It was the hardest thing I have ever been through. My older kids have developed such a bond now with their little brother, even to the point of being a little disappointed when they ask if they had a trach when they were little and I tell them no. =) He has become one of them.

    His trach comes out next month and I am eager to see how this impacts our family, particularly not having to lug his supplies around everywhere we go or keep Timmy above water at all times when they all just want to go swimming.

    I commend and herald all of you with your special children. I completely agree that we all do the best we can. Sometimes it’s just not the best we want it to be and we have to cut ourselves some slack. Especially those with children whose medical needs have no ending point.

    Best of luck with all you do!

Trackbacks

  1. […] “As a member of Hand to Hold and a parent of a child with special needs, I understand the support that parents need to deal with the family that they are raising. However, the same is true for siblings. SibShops acknowledges these brothers and sisters and not only allows them to talk about the challenges of having a sibling with special needs, but also to celebrate the wonderful, positive things that come with it as well.” Read Laura’s story: For the Love of Cameron […]

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