As a new parent many years ago, I had trouble sleeping for the first few months. We had our new baby next to our bed and I still had to have a monitor so I could listen to her breath (to know that she was doing so). As she grew and became attached to her pacifier, it was a constant battle to keep it germ free. If it hit the floor, it needed to be cleaned.
With the birth of my son, I was now more experienced. I slept a little better and we now had a 5 second rule with the pacifier that quickly moved to 10 seconds, then oops.
With the birth of our third and fourth, the twins, things changed dramatically for many reasons. First with the youngest, Juliann (by 30 minutes), there was pretty much no real rule, as long as the pacifier didn't turn up gross. She had several she alternated between as she grew and would lose one now & then, only to have it turn up days later... Back in her mouth. This is probably a normal sequence of transitions between children in most families, but we were not a normal family as we quickly found out.
Back to square one... With the oldest of the twins. Kirsten was born with Prader-Willi Syndrome (PWS) and we were learning of new concerns that had us back in the stressful stage of child rearing, with new concerns and new experiences ahead.
What hit me hard today was the fact that, like the pacifier evolution, a medical issue with Juliann is like the pacifier that has been under the couch for weeks. It's fine as long as nothing is growing from it! However with Kirsten, the same medical issue is like the pacifier with my first child. It was cause for concern until I had experienced it enough to know that it will all be ok. Consider this:
- How many parents could picture themselves inserting a tube threw their child's nose into their stomach for feeding, at just the right length and hopefully not into their lungs. This is how we fed Kirsten for the first six months.
- How many parents would have ever imagined giving their child daily injections... And we do two daily now. It was one injection daily for years 1 through 5.
- How many parents could stand the stress of watching their child poked and prodded in search of a good vein to draw blood from... Every three months since she was one!
- What your 80 lb child can eat in a day and burn off quickly, my 100 lb daughter can only have about half of because she does not burn calories effeciently. We have learned to eat a very controlled and healthy diet, which after a lot of hard work has become accepted as the norm in our home.
- The cold your child fights off through coughing and many over the counter medicines, my daughter struggles with because of low muscle tone (resulting in unproductive coughing) and limited access to over the counter drugs because of prescriptions she is taking. We have helped her, not only by a healthy diet and exercise, but by removing as many toxins as possible from our home to try and limit potential breathing issues, by using organic cleaning products.
- The quality time that many families struggle to find time for, is something that is a necessity for us because it helps keep Kirsten's mind off food. One of the issues with PWS is that she has a constant hunger that can, unsupervised, lead to overeating to the point of stomach rupture. She will never know fullness. We have learned to have a lot of fun and keep activities somewhat organized with many great family options, while getting exercise at the same time.
The bottom line, as a special needs parent I have learned so much more about child rearing than I would have without Kirsten. More importantly, it has benefited my whole family in their health and their future. It has also led me to a home based business that promotes products that are good for the family and the environment. Imagine using effective organic window, all purpose or degreaser cleaning solutions at a cost of less than 10 cents per 16oz. How about an organic laundry soap that costs between 17 and 36 cents per load. Then there is also their nutritional line that is second to none in quality. And so much more!
I would love to share my experience as a father or tips for a healthier home & family to help you. There is so much available to us that is so easily overlooked.
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