Good Afternoon and HAPPY MONDAY! As most of you would know, Mondays are a time to share the love with family and friends and “everyday” Mums that in one way or another are “Super Mums”
Todays Mum is someone I have never met before, yet her story has touched me more than words could express and I am pretty confidant that it will touch your heart also. A few weeks ago, by chance, I met her sister (Kelly) in a shop and started chatting…..as it often does, food allergies came up in conversation and Kelly was telling me how her Nephew is Coeliac and what an AMAZING and WONDERFUL Mum her sister is….this alone touched me, to hear such words of love….but the story that came after this left me ‘needing’ to talk to this Mum! I am SO thrilled she has agreed to be interviewed and share her and her families so very personal story. I can only hope you enjoy it also and no matter what life throws at you, you know you are not alone.
“Kim Felsch”
Tell us a little bit about you and your family?
I live very happily with my husband, Luke, of 14 years, who is a Financial Planner. My beautiful daughter Kiara Belle (the girl of song), who is 13 and in high school. My 10 year old son Declan (the boy with the beautiful heart) and Tavis who is 7 (the boy of courage), who turned our world upside down the day he was born and has taught us so much, a very wise young man. Last but not least ME, I am Kim, I am a teachers aid (for kids with special needs).
Tavis was diagnosed as a Coeliac in July 2011, my first thought was, “why him?” Even if it could have been one of my other children diagnosed to give this child a break! After many wasted purchases, trials and lots of failed recipes we have worked out what he likes and dislikes and over time it has become quite easy and the rest of the family enjoy it as well.
Kim and her family
What one ingredient can you not live without and why?
Garlic, it just adds so much flavour, especially when cooking is not your thing.
If you had half an hour to cook dinner and realized you didn’t have anything planned, what would you cook?
I do a pasta bake, gluten free basil and garlic pasta sauce with lean mince and red capsicum. So, so easy, cook your rice pasta, cook your mince (add some garlic), chop your vegetables (your choice), add it all to a baking dish, stir though pasta sauce, sprinkle low fat cheese over the top and bake in over for 15 – 20 mins, done, simple, kids love it.
What is once piece of advice you can pass on to other busy mums?
Be one step ahead all the time.
If you could have dinner with any 3 people in the world, who would it be and why?
My Nan, who is 89, because it doesn’t happen often enough, and she is one very wise woman with a pure soul who you learn something new off every time you speak to her. The second would be my husband because it would be lovely to take time out together. With our busy lives and keeping Tavis healthy it is really hard work to get out and most of the time easier to stay home, we are happy with it this way, but time together is always precious. Thirdly, would be Lance Armstrong, just to ask why did he bother to keep his body so fit and strong and obviously eat healthy food to fuel that body yet he thought it was ok to put drugs into his finally tuned body, I really don’t understand people who do this?
It’s interesting how I have never met you, yet I was so completely touched when I heard your story. I started talking to your sister, Kelly, one day at her shop (Loot Tuggerah) and food allergies came up in conversation. Kelly told me how her nephew, Tavis, has Coeliac disease and he was born with an Imperforated Anus. She told me some of the struggles you have been through and raved about what an amazing Mum you are! I couldn’t help but ask to be put in touch with you, as I instantly knew you were a ‘Super Mum’ and was hoping you would be interested in sharing your journey with others. Thank you for agreeing to do this, I understand it is so very personal. I will leave it with you to start at the beginning and share what you can, in hope of others knowing they are not alone……
Ok, Tavis was born by C Section on the 10th June, 2005 (shares a birthday with his Nan), it was a Friday, all seemed perfect, beautiful “healthy” boy, every one so happy. I fed him at around 8pm that night and as much as he wanted to suck he just didn’t seem hungry. Same thing at around 1am. The next morning I ran it by the nurse who took him for some checks and came back to tell me that Tavis was born with Imperforated Anus. My first thought was “Oh ok, whatever that is”, (later I was told it is when a baby is born with no bottom hole). I rang my husband and told him he needed to come to the hospital NOW. We were flown by air ambulance to Westmead hospital. Tavis to the Children’s hospital and I had to be admitted to the adult hospital due to having a C Section. My older sister who lives in Sydney went to sit with Tavis in intensive care until poor Luke could pack the other kids up and drive the four hours to Sydney to be with us. My three beautiful girlfriends came and kept me company. Luke finally came through the door with a wheel chair and took me to the Children’s hospital to be with Tavis. I do have to say that my husband was an absolute hero in all of this. He was the one to go through all the testing, the prodding and probing and take Tavis for his first op. Yet, through all of this, Luke made sure I was back to my room for breakfast, lunch and dinner to keep me healthy and recovery well from my op.
Tavis after his 6 1/2 hour operation
We were absolutely blessed to have Dr Hugh Martin assigned to Tavis. Tavis prognosis was that his bowel was a high bowel. This is very unfortunate as it is hard to create an anus and pull the bowel down to meet the anus when you have a high bowel. We took Tavis home a week later with his colostomy bag. Home life was very crazy trying to balance a 5 year old, a 3 year old and give Tavis the time needed to keep him healthy. We fell into a pattern and off we went juggling trips to Sydney and keeping life as normal as possible for Kiara and Declan.
At 9 months of age (2/3/2003) we were back in Sydney for Tavis’ big reconstructive surgery, a 6 1/2 hour operation. The aim of the surgery was to create an anus and bring the bowel down to meet the new anus. It was a very scary day and looking back we were so naïve. Half way through the op we were called to see the Surgeon, who advised us that his bowel was extremely high but he would do the best he could. It took Tavis along time to get over this op and he was very unwell. Tavis had to have a couple more little ops due to problems from the first op. When his bowel was pulled down to meet the anus, the lining of the bowel frayed. We just had to hope and pray that the body would take over and mend the bowel. Three weeks later we were able to come home and be a family again. I had to travel to Sydney almost every fortnight for Tavis to have bowel explorations to keep an eye on how the bowel was mending. Finally, the surgeon was happy with his progress.
On the 31/08/2006 Tavis had his colostomy closure operation, this being his 10th operation! It was a piece of cake and all went well. There big celebrations for his first poo! Then the expected nappy rash started. We knew that Tavis would have nappy rash, but we were not prepare us for how severe it was. It was like 3rd degree burns. Tavis had no control over his poo, so it would just leak out. He had to be changed immediately or the acid in the poo would burn his already painful skin. Sometimes we would change him every 10 mins. We did this for 18 months, but Tavis had no quality of life and lived in pain 24/7. After lengthy discussions with Dr Martin, we were given some options to give him quality of life. The best option for Tavis was a thing called a Chait Button. No one as young as Tavis had ever had this procedure. In March, 2008 at the ripe old age of 2 and nine months Tavis received his Chait Button! This allows us to irrigate his bowel through his little button on his belly each night and keeps him clean throughout the whole next day. He has had his button now for over 4 years and at first it was a massive task to get Tavis irrigated and the other kids sorted but it changed our lives dramatically. Thankfully his everyday pain was gone as his sore bottom cleared up and we could lead normal lives during the day. We now have the bowel irrigations down pat and it has become part of our nightly routine. It is hard to go out for dinner or socialise much but hey it is a million times better now he has his “special” button.
Tavis often complained of a sore tummy. We just related to the bowel issues. At the beginning of 2011 it was time to find a local Paediacian. We had an appointment with Dr Campbell in Taree. As Dr Campbell was going through Tavis’s history with me, he happened to asked how much red meat he ate. I told him that Tavis did not like red meet but I was very happy with his diet and didn’t feel that it had affected him. Dr Campbell sent Tavis for a blood test just to make sure his iron levels were ok. It was discovered that his iron levels were so low that he had to have iron injections. These injections were extremely painful and awful. By the third injection of having to hold him down I asked Dr Campbell if there could be something underlying as I was very happy with Tavis’s diet and did not understand the low iron levels. Dr Campbell said the only thing could be Coeliac decease. I just laughed and said “well it won’t be that”. We then got Tavis tested for Coeliac decease. Dr Campbell called me a couple of days later and advised me that he blood test came back with a high reading for Coeliac decease. Tavis was admitted to John Hunter Hospital in Newcastle for a bowel biopsy, which confirmed he was a Coeliac.
So that is Tavis’ story! There are many things that happened in-between the events that I have laid out here. Some of these events are to horrifying for me to share. At the end of the day, we have a beautiful boy who seemly knows things we don’t even know. He is such funny boy who is so loving. He suffers with some anxiety now, but we work through that. He plays footy, wants to start hip hop, surfs and leads a pretty normal life.
Tavis has brought so much joy to our family and we are very lucky to have him.
Tavis – the boy of courage
I am wondering if anyone reading this is not in tears! I have read this several times now and get teary everytime! What a gorgeous and brave little boy and what a SUPER MUM (and Dad!) and by the sounds of it, wonderful supportive family and friends!
Another moment to make us stop and appreciate life and be grateful for our health and blessings we have.
There are plenty of moments in life we feel we are alone (I know I have mentioned this before on here when I feel I talk to myself sometimes!) If this has touched your heart in anyway it would mean so much to me if you left a comment either here or on Facebook (www.facebook.com/cutoutthecrap) and show Kim just how amazing we think she is and to Thank her for sharing her story.
Wishing you a wonderful week full of love, laughter, happiness and good health,
Take Care of You,
Collette x
Super Mum "Kim Felsch"
