Raising a special needs child

This essay is in response to a request by CNNiReport about what it’s like to raise children with special needs:

We were going to be parents! In 2002, my amazing husband, John, and I were expecting a baby boy. Our future was on its way and I was going to do my very best to make it a healthy one; I dropped sugar, alcohol and caffeine, planned my meals and snacks with care, joined maternity yoga, made all the medical visits… Our little boy grew steadily bigger and stronger. Then one day in our 32nd week our son suffered an in utero Grade IV brain hemorrhage.

How do I explain the life of raising a special needs child? I cannot. Each child is as different as the snowflakes falling to the earth; spectacular, unique and fragile. We have connected and marveled with many of these children and their families, yet we can only understand how we survive our own experience.

We entered those wide hospital doors, stepped through and tumbled down the rabbit hole and have been trying to gain a foothold ever since that day. I soon learned my close girlfriend delivered her own son on the same day. Through the years, I could only imagine how her own family experience differed as each new Christmas and Baseball photo arrived and I mourned for all my child had lost.

As you labored through birth… an emergency team whirled around me.

As you heard your child’s first cry… I witnessed my child being resuscitated and whisked away, while my husband grasped my hand.

As you received your son into your arms… I was put back together and wheeled into a NICU to view my son through thick glass for only a moment before being removed.  Buck brothers 042

As you fed your child and spent your first night together for the first time… my husband met with neonatologists, signed forms and received the NICU rules and procedures while I stared at the ceiling listening to the celebration all around me in the maternity ward.

As you left the hospital, gently easing your son into the car… we sat in a hospital office signing Do Not Resuscitate forms.

As you saw the world open up before you… I saw hope fade.

As you fretted over a 3 am feeding… I hooked myself up to a breast pump and listened while my husband conversed with a NICU night nurse to learn the latest status.

As your child learned to crawl and feed himself… we attempted to comfort Riley’s wails which pierced our souls, cleaned vomit and met with yet another doctor.

As you returned to work… we left ours, packed our bags and moved to find easier circumstances.

As you explored the world together… we quietly closed our doors and turned off our phones.

As you taught your child to sit at the table as a family… my husband and I took turns cooking and eating so that Riley would be fully cared for at every moment.

As you prepared for school tests… we reworked medical equipment, upgraded wheelchairs and ground specially prepared food.

Now at eleven years old, as you watch baseball and drama tryouts… my son is learning to signal “yes” and ‘no.” An achievement beyond our wildest expectations. Riley can communicate!

July end 2012 051This little family must work harder to maintain the marital bond, to keep our emotions, health, finances and our future from disintegrating at every new threshold. We also rejoice in every success and appreciate the life we have built far beyond the capacity we would have had with a typical family. John and I will be there for Riley in every way and every moment. We have each other and we have love. What more can we ask for…






Riley’s Smile

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10 Responses to Raising a special needs child

  1. Steve Thomas says:

    An incredibly well written post and can only be inspired by your strength of character and positive outlook. I have myself worked with disabled children and adults for a number of years so have some understanding but when it was my job it was only so many hours of a day and then I went home and switched off. Being employed in that job could be quite exhausting and rewarding at the same time.
    I wish you and your family all the best for the future and look forward to reading more about Rileys progress in life as time goes by.

  2. Joy Healey says:

    What moving post, which just reminds me how LUCKY I am, and what a miracle of life it is, that I have two perfect sons and two perfect granddaughters.

    As Edward says, I doubt I could have coped.

    I so admire your strength of character and Riley is blessed to have such a loving family.

    May you have many more successes now he is communicating with you.

    Joy x

  3. vic waugh says:

    To echo Lizz, this post certainly puts things into perspective. What a little fighter Riley is and so brave for someone so young.I hope he continues to develop with his communication xx

  4. I seriously doubt if I could have your strength of character or your will.

    My love and heart goes out to your family, God bless you.

  5. Lizz Riley says:

    Wow, certainly puts things into perspective.
    So glad that Riley is communicating with you. I only hope he can say more soon.

  6. Jeri says:

    How well written and a what a strong voice you are and continue to be for Riley. I have the privilege of getting to know Riley through my daughter who has drawn a beautiful picture with the beautiful words in which she uses to describe him as an individual as well as the other children in her classroom. Hope I get to meet you and Riley this coming week. God Bless You and your family today and always.
    Jeri (Erin’s proud mom:)

    • Bonita Mom says:

      Jeri, We are so blessed to have Erin as Riley’s teacher. We are looking forward to meeting you this week! Stacie

  7. Terri says:

    I am so thankful for a healthy child, babies with special needs have such a place in my heart.

  8. Thank you for sharing this. My experience is both different and similar…go figure. My daughter has Lennox-Gastaut Syndrome, a rare severe form of epilepsy. Her first nine months were normal…then it was down the rabbit hole for all of us. I really appreciate your grief…and your appreciation for the growth beyond what could have been with a “typical” family. I love my family as is, but there are days I grieve too. It truly is difficult to explain to even family who haven’t been through this.
    Thanks again!

  9. Lancelot says:

    I really liked how you portrayed this post.
    This post touched me.
    I’m proud of you both, and for Riley.
    You have worked hard enough, and i know you will keep fighting for the best.
    lots of love.

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