Posts Tagged ‘Down syndrome’

This is my baby minutes after birth, and shortly before I knew he had Down syndrome.

My husband already had it figured out.


Read Full Post »

Praise Report

I just had to write about my baby.  We got great news just the other day, and I am thrilled.  He was supposed to see a cardiologist at 6 mos for the three VSDs he was born with.  VSDs are small holes in his heart, and it is common for babies with Down Syndrome to have some sort of heart defect.  Some are worse than others.  His holes were quite small, but needed to be checked.

Many people have been praying for him, and I can praise my Lord and Saviour that 2 of the three holes are now gone.  The one that is left is the most common defect in a heart, and is minor, negligible, and most likely will never change, except to get a little smaller.

I know God can do better than that.  We are praying for it to go away entirely!

After the doctor gave me the news, I was elated.  It wasn’t like I had been worried about it, but, it was always hanging over us.  Holes in your baby’s heart.  Not a good thing.

The doctor left the room, I was getting my little sweetie dressed, and I just began to weep.  I know what God can do, but he did it for me.  He did it for my baby.  He did it for His glory.  I was awed.

Thank you, Lord.

Read Full Post »

I have trouble maintaining focus on any one project for any length of time. Consequently, many things remain undone. Right now, I am reading a book on Leonardo da Vinci, one on Art Journaling, and several cookbooks to incorporate new foods into our diet. I also am trying to begin some art projects, make a menu plan, plan our next year for homeschool, sort through my thousands of digital photos, maintain a sense of order in the home with my oldest one (my great helper and the equalizer) being mostly gone for the next two weeks (and much of the summer spent in serving–not a bad problem to have, although time-consuming), finish inputting last school year into my HomeSchool Tracker and grading papers, keep up on diaper washing and diaper duty, avoid putting the baby down for too long at a time, coordinate the myriad therapies he now has, avoid neighborhood catastrophies. . .

I’m in the trenches.

I’m easily overwhelmed.

It’s not that I’m stressed so much, just that I don’t feel like I accomplish much each day.

I’m in need of focus, and yet, I don’t have time to do so. Today was hectic, and when my darling husband brought home a dinner we all thoroughly enjoy, as we bowed our heads to pray, I said to him, “You’re too close. I’m feeling over-stimulated right now.” He said, “I know.”

How blessed am I to have a kind husband who senses my tension. How small am I to be so insensitive.

He left me to be by myself for the evening.

Off to pray and to spend some much-needed time of reflection.

update:  I see how I can forget all too easily this time of rest God has gifted me with, and much time of reflection allowed me to see that the slowing down process is so essential for me right now.

Read Full Post »

I had an opportunity today while I was out with my eldest daughter and baby boy, grocery shopping, to see an “elderly” man with Down syndrome. They must have arrived shortly after we did to the store, and as we were weaving our way through the store, I felt compelled to speak with this woman he was with. She was apparently older than him, and not only did I wonder at the relationship, I also wondered how the man was doing–how’s his health, how old is he, how is he doing, is he happy? The woman was accompanied by the man I already mentioned, and a younger man, who looked like a typical young man.

At one point, the younger man actually commented on my baby as he passed us going down an aisle. I asked my daughter if she would like to speak to them. She looked puzzled and asked, “Do you?” I said I did, and that if we passed them again, I would say something.

It happened, then, that we were on the same aisle, again, but at opposite ends. We needed something else towards where they were, and so headed towards them, only they didn’t come my way, but continued down the long walk that goes past all the aisles. I was truly compelled in my heart to speak to the woman.

We caught up with them just as she was turning away from a sales demo. I said, “I just had to say hello to you, this is my little boy, he’s four and a half months old, and he has Down syndrome.”

Okay, right now you’re thinking I’m quite odd. I must say that when our son was born, we became part of a much larger family, only I didn’t know it at the time. All the people I have met since his birth whose lives have been closely touched by a person with Down syndrome have a certain camaraderie. Those with immediate family members suddenly become an extension of our family. Why? I don’t know, it must be the common bonds, the understanding, the knowing. It’s not like a “been there, done that” kind of thing, because we’re all in the middle of it, more like “I’m right beside you, and I know. . . ”

So, does the woman get offended at my effrontery? No, she said, “Ohhh, your son? Really? How old? Ohhh, he is so sweet.”

We stood and talked for about a half an hour. Her son is 59 years old. That is incredible! Truly! She told me when he was born, the doctors didn’t expect him to live past 12. Her other boy has autism. He had a camera with him that he took a picture of my baby with, and they are going to mail it to me. She is so glad I spoke to her. So am I.

Read Full Post »

It’s funny that I’m still trying to learn about myself. I’ve gone through a lot in this process of being a believer in Jesus Christ. I am continuing to learn more about my Lord, and more about myself. I think we all come to different realizations at different points in time. What I am coming to see is that so much of what I’ve done has been in search of being what I ought to be. Our third son’s birth has given me much pause for reflection.

We knew shortly after he was born that he probably had Down syndrome. Aside from learning a whole lot about Down syndrome (which he does have), I have also learned that my expectations of my other children have been unusually high. I am very matter-of-fact most of the time, and I haven’t always made allowances for their individual differences, or for their strengths. Praise God for giving me this insight.

I am now trying to reassess so many things in my life, as it is forever changed by my baby’s birth–and in a good way too. I am trying to see how my strengths should be used to glorify my father, help my husband more, and encourage the positive in my children instead of pointing out their continual flaws, which we all have–I mean, after all, we are all still residing in the flesh, right?

Anyway, This new blog is an experiment. A place for me to try to explore some more things about me. Hoping to be more open where it counts, and more creative. I have been enjoying reading about art journaling and exploring some fun sites about that. One book I got recently was “Wreck This Journal” by Keri Smith. My kids are enjoying looking at what I am doing and soon I will be getting a copy for each of them. It’s not really an introduction to journaling, but more of “No Holds Barred” method of journaling. It’s probably not the best method for me, but it is certainly very exploratory.

I’m already learning more about blogging, and enjoying the ease of use of WordPress. So, the journey continues. . .

Read Full Post »