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Dear Parents,

As the mother of a child with a disability, I understand the struggles facing so many families today. For so long, I anticipated the joyous birth of my first child, and I had so many hopes and dreams for him, long before I ever laid eyes on him. After his tragic delivery, where he suffered extensive brain injury and lost a lot of oxygen, I watched, amidst the chaos, as the team of doctors struggled to breath life into his lifeless body. The minutes passed with no heartbeat and no successful breathing, despite the rigorous attempts to revive my son. Shock set in. It is the body’s way of protecting oneself. It didn’t help that immediately following Colton’s birth, I had to undergo three hours of reconstructive surgery due to the damage sustained from the delivery. When I awoke in the recovery room, I was met with doctors and a priest, who informed me that the outlook was grim. Although they had Colton on a ventilator, the hemorrhages in his brain, together with the lack of oxygen he suffered, meant that he may never walk or talk, if he were to survive at all. They performed an emergency baptism on him at my bedside in the recovery room, and whisked him away in an ambulance to receive the best care possible at New England Medical Center’s Intensive Care Unit in Boston. I will never forget what he looked like when they brought him to my bedside. Being a registered nurse had not prepared me for the devastation I felt at watching my own child attached to a ventilator, IV’s, and so much equipment, not to mention seeing his swollen body, black and blue. Knowing he had a fractured skull and collarbone to boot, my heart bled for him and the pain he must have been enduring. I wasn’t allowed to touch him, for his condition was so grave, but I was able to give him a gentle kiss on the cheek before he left. I knew it might be the last time I would see him. Words cannot describe the feelings I felt, and to this day, remembering that moment still brings me to tears.

In the weeks, months and years that passed, there were many sad and discouraging moments, but despite them all, my son survived, and that was the greatest gift I could have been given. I remember praying to God, and asking him to please make sure that, if nothing else, Colton could feel love. Whether he would be in a wheelchair, unable to talk or eat on his own, or whether he would be mentally incapacitated, I just wanted to know that he could feel love, because I had so much love to give. I won’t say that the road was easy. It wasn’t. There were moments when I felt overwhelmed, discouraged, depressed, worried, scared, and sad. But somewhere in between those devastating moments, were moments of joy and happiness. Colton was a miracle to me. Every little thing he did was a gift that I treasured. Every obstacle he overcame was inspiration. Every smile he gave, gave me purpose and determination to carry on. I made a promise to myself, that no matter what, I would do everything in my power to help him progress. I would not have unrealistic expectations, but yet I would always have hope and faith. I decided that whatever he was able to do, or unable to do, would be okay with me, as long as he felt loved and encouraged. I wanted him to have every opportunity possible to reach his greatest potential. It meant many sleepless nights tending to fevers, illness and seizures. It meant many exhausting days going from one therapy or doctor’s appointment to another. It meant spending hours in waiting rooms and emergency rooms. But now, twelve years later, I can tell you that every moment was worth it, and I would do it all again.

As parents of children with disabilities, we need support. We need support from professionals, from family, and from other parents in similar situations. I recommend parent support groups highly. There is great comfort to be derived from meeting with and talking with other parents who understand. They were the greatest source of helpful information to me. I treasured their advice, learned from their experiences, and formed lasting friendships that I still cherish to this day. It is okay to cry. It is okay to feel overwhelmed. It is okay to feel like you need a break sometimes. Allow yourself to grieve. Grieve over the expectations you had, and now realize may never come to be. Grieve over the losses, and allow yourself to feel sorry for yourself once in a while. It is normal, and it is okay.

Eventually, you come to a place of acceptance. You realize that this is how it is. You may never understand all the why’s, but keep the faith, and accept the challenge. I can assure you, you will be a better person in the long run. Your child is a gift, and the lessons you can learn from children with disabilities are a gift to you. Patience, hope, faith, empathy, understanding, courage, determination…these are all gifts that will make you a better person, a stronger person. As a nurse, I have worked with so many children, many of whom had very complex disabilities, and one thing I have learned over the years, is that our bodies are simply a vestibule for our minds. Every child is special, and valuable in their own unique ways. Life is unpredictable, and can be full of heartache and challenges, but if we search deep within ourselves, we can find the strength to do what needs to be done. Don’t give up.

I would love to hear from other parents. I welcome your stories, questions, and comments. I encourage those of us who have older children with disabilities to reach out to the new Moms and Dads who are struggling with many of the same issues we have faced. The issues are endless. There are the medical issues, the financial issues, the educational issues, etc. The struggles don’t end over time, but they do change, and we become better and better at handling them. If you have a child with a disability, or if your child is friends with a child with a disability, feel free to have them drop a line to Colton (colton@coltoncares.com). He would love to hear from them. If you know of someone who has a child with special needs, please refer them to this site. We want to do what we can to help others, and we hope to create a network of families who support one another.

I would like to say to all the children out there who may be facing difficult issues, hang in there! You are special and your feelings matter, and there is nothing wrong with being different. Believe in yourself. All that matters is who you are as a person, not what you can do, or how you look. And to parents, I would like to say that as much as your child can inspire you, you are their inspiration too. Be proud of your children, and be proud of the endless care you give. It is not an easy job, and you are a special person for being able to do it. Keep the faith!

To parents of typically developing children who may be reading this, I say thank you. It is parents like you, who take an interest in learning more and understanding the plight of parents of children with special needs, who raise children that are more accepting, kind and compassionate to other children. Your children, through knowledge and understanding, are the ones who can make an incredible difference in the lives of our children. Thank you.


Sincerely,

Kerrianne McGrath Houghton
mom@coltoncares.com