Real life Down Syndrome Awareness
For some reason, the misinformation is still prevelant that Down Syndrome only occurs in older mothers. After running this site for awhile, I am here to tell you that the vast majority of mothers who have a diagnosis presented to them are falling into the “young mom down syndrome diagnosis” category. Katie was one of those moms, never expecting a Down syndrome diagnosis this young mom has now embraced it and her beautiful son, Sutton.
This post has been simmering in my mind for months now, I wanted to share that what can wreck a person, or at least feel like it is, can actually strengthen a relationship into something so solid the ties seemingly cannot be broken.
When we received Cedar’s diagnosis I had been married to my best friend for 18 years, that is a long time, friends. We have been through the births of 5 other children and the miscarriages of 4 that we never got to meet. We have been through career changes, financial ups and downs and so much more walking this path of life together. Marriage is not easy, in fact, there were times that we both wondered in the beginning if we were going to make it.
When Cedar was born I wondered for a time if this was going to break us, if this was the thing that would drive a wedge between us and cause marital stressors that would be hard to get past. You see, I wanted another baby but my husband would have been happy to move out of the baby bearing years. We ended up expecting baby #6, something that was a bit of a surprise to both of us. I had a bit of guilt at first when we received Cedar’s diagnosis, guilt that my husband would be angry with me, that it would be his resentment that I had wanted another child and our child now had a disability. I was worried that deep down my husband and I would not be the same again.
Here is where God, prayer, and a good relationship base helped us become stronger. My husband was my rock in the beginning, he was the one who took the news and just was kind of okay with it. He was the one telling me, it’s going to be fine, he will be great and it is all going to be okay. This was the man that I was afraid was going to be upset…he wasn’t.
There was a lot to take in when we first received Cedar’s diagnosis though, a lot of the medical world that we had to navigate together and we did it by checking in with one and other daily, and praying for one and other as well as praying together as a couple.
In the first weeks we gave each other space, but not too much. We cuddled our new little one and talked about him to one and other. We would ask each other what each other’s concerns and fears were and try out best to comfort one and other. We checked in with one and other by saying things like, “How are you doing with all this today?” Some days were harder than others, sometimes we gave each other a break and when one of us was in need of a break from the emotional aspects of it all, we provided that to who needed it. In a marriage you kind of know what your partner does for healthy stress relief and we offered that to one and other, my husband gave me time to process but also gave me time to do what helped me relieve stress and I provided the same avenue for him.
We also gave each other grace. When one of us was maybe a bit more snippy with the other than usual, we gave each other a break instead of fighting fire with fire. What I learned through the whole process is that there are things that come into your marriage that can actually strenghten you, when you fear that they won’t.
Here are some tips I would offer any other couple on this road…
When you become parents, it is stressful. When you become parents of a special needs child, it is even more so but don’t push one and other away, find time to talk about your fears and use each other’s strengths to help both of you. Set aside a time when you can talk to one and other daily, be it over a cup of coffee in the morning or just before bed at night. If you are the one who wants to talk and your partner doesn’t, this is where prayer is invaluable. Pray for your partner, pray for them to talk to you and to recieve comfort.
We are a Christian couple and I do not know how people make it in their marriage if they don’t have God, I know we never would have. If you set aside time daily to pray for one and other it is never a bad idea, it is even better when you can pray together.
In the midst of all the processing, medical screenings and physical therapy, continue to make time for dates. If you do something as simple as a fine cheese and cracker tasting on your back patio while the baby sleeps, it still counts. If you have the ability to enjoy dinner out on the town weekly, all the better, but whatever you do, date your spouse.
When the emotions become too big, the weight of it all too much, sometimes we reach out to others. Maybe it is your best friend, maybe your pastor or a parent, but reach out when you are struggling and let your spouse know that you are reaching out.
Any married couple will tell you that there are times when a marriage is not 50/50, in fact, often it’s 100/100 or 25/75, the bottom line is one of you needs to be strong for the other and then sometimes the roles change. Marriage is hard work, but it is worth it. Your child deserves parents who are able to work through the emotions and forge ahead so be sure that you make the decision because it is worth it.
Yes, Down Syndrome constipation and natural remedies can help!
Let’s start with the why…why do children with Down Syndrome often have difficulty with constipation? Down Syndrome constipation and natural remedies can help. It all starts in the gut (pun intended). Your colon, also called your large intestine which “removes water, salt, and some nutrients forming stool. Muscles line the colon’s walls, squeezing its contents along.” -WebMD is a muscle. What we know of children with Down Syndrome is that they often have low muscle tone or hypotonia. You may not realize that this low muscle tone affects EVERY part of the body, internal and external. So, for the colon and it’s magic squeezing muscles…the effectiveness is not as, well, effective in our kiddos with Down Syndrome.
Okay, but what does this actually mean? When we eat food and it travels through the digestive tract, if the colon is doing its job, the waste from our food is sqeezed down the large intestine to the small intestine and out the back door. However, if the muscles are not working effectively what you see is waste matter that sits in the colon a bit longer than it should and the process mentioned above of removing water, salt, nutrients, etc continues. This removal of water means that the stool gets harder and harder (think of a grape turning to a raisin). Well, now that this stool is beyond firm and rather more like a hardened rock, it is EXTREMELY difficult to get out. Hence the crying, pushing, irritability and other signs you may see in your baby.
So, what is a mama to do? Most medical professionals are quick to push Miralax or other over the counter medications to help your little one go, but, you don’t want to create a reliance on medications or deal with the side effects unless absolutely necessary so I am always one to try natural remedies (okay totally exhaust natural remedies) first before turning to medicine.
Now, let me start by saying that medication is easier. It is, because you just give it and move on. However, I do not believe it is always better. It is often the road less traveled that is better, in this mom’s opinion.
I learned quickly that I had to be quite the scientific observationist when it came to poop. I had to keep close tabs on the poop to be sure that at the first sign of hardness or constipation, I was on it before we had a problem. That is how I was able to avoid using medications but this is something I STILL have to stay on top of. Being that my son is still in diapers it isn’t exactly rocket science, I mean I am looking in that diaper multiple times a day anyway.
My first suggestion…PRUNES.My son started having difficulty with constipation around 4-5 months old. This is before I was giving him solids so we started with prune and pear juice. At the first sign of his poop getting a little too solid, I started in with 4-5 ounces of juice daily. Once he was older I began adding pureed prunes to his diet on a daily basis (you can mix them with apples, peaches, and other fruits to make them more palatable.)
This one is REALLY hard. Especially if you are bottle feeding. However, often dairy causes gas, discomfort, and yes, constipation in babies. If you are nursing, try cutting out all cheese, milk, yogurt, and other dairy products for 3-5 days and see if there is a difference.
If your child is eating solids, get creative. I am a firm advocate for making your own baby food because you can modify the food based on what your child needs. If you need more “make you go food” add spinach, broccoli, and other green leafy’s into your child’s diet. You can quite cleverly disguise steamed broccoli in sweet potatoes or even apples if need be.
Fourth Suggestion- Ground flaxflax meal is a make you go quick kinda thing. You need ground flax though as whole flax seeds are not digested. Mix the flax in with food but be sure you are also offering LOTS of liquids as it does no good to up the fiber intake without plenty of fluids to help it all along.
Fifth suggestion- Coconut oilCheck with your pediatrician but many people find that coconut oil has a laxative effect on them. You can warm the coconut oil up (it melts at approx 76 degrees) and add to a bottle or food starting with 2 tsp a day and working up if need be.
Try some of these natural remedies and see if, when you stay on top of the situation, you aren’t also able to use natural remedies to control constipation in your kiddo.
Need to know more about Down Syndrome? Check out this 101 post that can tell you all you need to know.
A beautiful story highlighting a sunny day visit to the farm. The reader is invited into a whimsical tale with animals and children enjoying their adventures. What makes this story unique, however, is that each of the children photographed in the book has Down Syndrome. The storyline is appropriate for all children and clearly shows the abilities of children with an extra chromosome. 10% of the profits will be donated to various Down Syndrome organizations.
Paige has been featured on the site before, her beautiful girl named Eden showed the world just how well a child with Down Syndrome can learn sign language. However, this time I asked Paige what many mamas have talked to me about…their fear of wanting another child after having a baby with Down Syndrome, How to handle the fear that they may have another child with special needs. So, Paige shares about getting pregnant again after already having a baby with Down Syndrome.
