Ben is full of life. Can you tell us a bit about your family?
My name is Rachel, and I am a Grade One teacher and my husband, Mikiah, is a High School teacher. Mikiah and I have been married four years and had Ben 15 months ago. We love being outdoors, watching our favourite hockey team (Calgary Flames), and spending time with friends.
Can you tell us about Ben?
Ben is full of life. He is the most joyful little human being I have ever known. He is our spunky little thrill-seeker, who has demonstrated so much strength, determination, and adaptability for such a little person.
When did you first find out that Ben would be born with a cleft palate and lip?
It was the day before my 30th birthday, and we decided the best gift to ourselves would be an ultra sound and picture of our little baby. That same night, I received a phone call from the doctor. She began the conversation by saying, “So we just looked at the ultra sound. Would you like to hear the good news, or the bad news?” She proceeded to say “Well, the good news you’re having a boy!” She then went on to the “bad news”. The terminology was very medical and all I remember hearing was “deformity”… “abnormalities” …” “risks”.
Can you describe what you were feeling when you received the news?
I remember feeling completely out of control and scared to death. I felt sad that a joyful time now felt like a 5 month scary waiting game.
What has the first year of Ben’s life looked like for you and your family?
Ben’s first year of life began as a whirlwind.
At two weeks of age, Ben needed to go back to the Vancouver Children’s Hospital for a day surgery, where the doctors would make a plastic plate that moulded to the shape of the part of his soft and hard palate that wasn’t there. This would help with breathing, eating, etc. After this procedure, we took Ben to the orthodontist who showed us how to glue a plastic plate inside his mouth and tape his cleft shut.
We needed to drive back and forth from Vancouver several times a week for appointments and procedures. What seemed to be the most impossible tasks became our every day.
Ben had a lip and nose surgery at 3 months old.
I remember the moment they brought me to the recovery room and Mikiah and I heard a scream but didn’t think it was Ben. It sounded different. Deep and painful. We looked behind a curtain and there was our little baby… swollen so much we couldn’t see his eyes. Ben was in hospital longer than expected due to pain and throwing up that didn’t get under control, which we later learned was an oversight in medication (they had forgotten to administer a medication over the course of his recovery).
Next came the palate surgery at 11 months. Surgeons warned us that this surgery would be 10x harder than the first one. It was definitely a big surgery for Ben, and a long hard recovery. Ben adapted so quickly to arm splints (which he had to use for a month), I was able to hold Ben in the OR, he was back to his happy self within a week!
What medical procedures has Ben had to undergo?
- 2 weeks old: Day Surgery (Plastic plate for palate)
- Lip taping
- Nose stent
- Plate revisions (adjustments to fit mouth properly)
- Lip and Nose surgery
- Auditory testing
- Ear tubes
- Palate Surgery
From where do you draw your strength?
I can honestly say that the only source of strength is our hope in Jesus.
It has often been a day-by-day, hour by hour; sometime minute-by-minute fall on your knees asking the Lord to give you the strength to face what you know you can’t. Reading the Word of God, prayer, and thankfulness has been my source of strength.
I also have really great friends and family who have stuck by me in the good, bad, and ugly. I have been so encouraged by the love and selflessness of these people… they often got me through.
If you could go back in time, what is one thing you would want to tell yourself about the coming two years?
I would warn myself that you are going to receive a lot of information, statistics, and risks that are going to sound very scary and impossible. You will be in many situations where you want to take your son’s pain away, but can’t. Don’t fear. God will take good care of you.
What are a few things that friends, family, etc could do to offer (practical) support to a family walking through a similar journey?
We have the most amazing friends and family who walked through this journey with us every step of the way…. still walking with us.
- Prayer
- Meals
- Understanding
- Help packages
- Cleaning
- Just check in
If you could say one thing to a family that is about to go through what you have, or have any advice, what would you say?
- I would say that friends and family are very important… so ask for help. They want to help! Don’t try to do it all on your own.
- Also, having someone or a few people you trust to talk to. It’s important that the people you surround yourself with are life-giving!!
- I would also say that people will make comments, try to give advice that will sometimes hurt or be offensive even. Try your best to brush it off, and feel confident in what YOU are doing as a parent.
- Give yourself breaks.
- Be informed. My husband and I have learned that you are your child’s best, sometimes only advocate…. And very easily they can slip through the cracks if you’re not on top of things. Seek medical advice, ask for support, and don’t worry about offending.
