Thursday, June 25, 2009

This morning, as I held my precious new little boy (Sugar Roo), I realized that he is going to be six weeks old tomorrow. It doesn't seem like it has been that long already. I lamented and longed for the days that I was able to say, "Oh, he's 5 days old." Because babies grow and change so fast at this age, we watch them ever so closely. We know they won't stay this way for long. Every milestone is recorded and celebrated.

But as they get older, the milestones get farther and farther apart. We measure their age in ever increasing increments. From days to weeks to months and then to years. And we stop watching them. The passage of time tricks us into thinking about other things. Suddenly we find ourselves looking at a teenager and saying, "No. It was just yesterday that I was holding you like this. You can't be taller than me and have gigantic feet and like girls!" Yet, there they are changing before your eyes.

Friends and family love to tell us when they are little to enjoy them because they grow up so fast. I think we need to remind ourselves to keep doing that even as they get older. I'm finding that my 10 and 13 year olds are growing and changing just as much as my 4 year old and newborn. I just haven't been watching.

If there is a child in your life, whether they are 6 days or 60 years, take the time to look at them. Really look at them and marvel at who they are and what they have accomplished in their short time on this earth. Relish the joys, and the heartaches, they have brought to your life. Celebrate their milestones, not just on their birthdays, but every day. And if at all possible, pull them close and hold them in your arms as long as they will let you. Too soon, they may be out of your reach. You may then find you have a whole new perspective.

Tuesday, August 5, 2008

Time's fun when you're having flies

Wowie, kazowie! It has been a looong time since I posted.

Yes, the Medicaid waiver program finally came through at the end of January. Better late than never. Of course, that ended up bringing its own set of problems like flu, severe food allergies, ulcers, and weird nurses. But at this point, everything seems to be on a more even keel.

My baby started school last February. I cried as I watched the bus drive away with my little monkey inside. He didn't get a great start because of all the health problems he was having, but things improved towards the end of school. I am very optimistic about the upcoming year. Over the last year he seemed to grow more in personality and cognitive ability than in physical skills. Since we changed him to whole foods (still pureed and given through the g-tube), he is getting so much stronger. I think we will be seeing some dramatic improvements in his gross motor skills this year.

The bigger two are preparing to go to Montessori school. You read correctly. I am NOT homeschooling this year. The last 4 years have been difficult, to say the least, and all of us need a break. They have sacrificed so much for their little brother. It is going to be great.

Hubby is starting a part time job at Target as a back room stocker to make some extra money. He would have liked to work at Lowe's or Home Depot, but they are having to cut jobs right now. It will be tough not having him around in the evenings, especially for the kids. We will just have to work a bit harder to make the most of the time we have together.

In closing for tonight, remember this:
When someone hugs you, do not let go until they do. Even if you are not the touchy feely type, give it a try, and watch their response. You may gain a whole new perspective.

Tuesday, October 2, 2007

A New Day

When I woke up this morning, I was nervous and excited all at the same time. Today, we met with some ladies from a waiver program designed to help families care for their children in their homes rather than just putting them into a nursing home or a similar facility. If we are accepted into this program, we will receive paid respite care (babysitting/relief) by a nurse, an allowance to make some modifications to our home (bathtubs, doorways, etc.), medical equipment not covered by Medicaid, and what we need the most, Medicaid.

I think the meeting went well, and I am sure we will be approved. The entire process takes about 2 months and we will have to put SugarMonkey into a nursing home over 1 night. But I will be able to stay with him. No sweat.

After the ladies left, I just had to cry a little. Fighting for Stephen to get the help he needs has been a very long battle. It has taken its toll on all of us. God is rewarding us for our patience, even if it was shaky at times.

I have to remind myself daily that God is in control. He has shown us His power so many times in our lives. Things have always worked out for us. They have only happened the way I thought they should a couple of times. Most of the time I have had to learn to wait or do without. So when I am discouraged by the way things are unfolding, I remind myself to look back at my life and see that God has never failed me. Then I am able to...

Keep it in perspective.

Monday, September 3, 2007

Something Lost

I often comment about being caught up in the drudgery of our daily lives. But something I have only recently started noticing is how we can actually lose important things by not paying attention to where we are going. Marriages can be damaged when we forget what made us fall in love in the first place. We turn around and our children are suddenly grown while we worked so hard just to make sure they had every thing we thought they needed. Friends become virtual strangers.

I am sad to say that in my case I have lost myself. It has been such a long time that I have had to worry about my family and their needs, that I have forgotten my own. Don't misunderstand what I am trying to say. I want to take care of them, and I am the one who has chosen to carry that load. But, I have done it at the expense of my spirit, my self-worth, and my sanity. It has been a dark and lonely path at times, yet I was always confused as to why it was happening.

The light has finally come on, and I am understanding now what I have to do to find ME again. First, I am a child of God and I desperately need to be close to him. Sure I talk about Him, but He hasn't been an active part of my life for some time. Second, I accept that I am NOT Superwoman, and I do not have the physical strength to do everything. Third, I deserve to treat my body with dignity and respect, including eating healthy and exercising. Forth, I the midst of providing fun and enjoyment for my family, I must also find it for myself, even if I have to be alone to do it. As you may have guessed, I am trying to get back to painting. It brings me so much happiness when I am doing it, and I can actually make a little money for the family at the same time. So, I think I will start posting pictures of some of my work each time I blog. I hope you enjoy them.

I pray that in the days ahead you will look at what might be lost in your life. You may not have realized it was even gone. Just remember that the best way to give all of yourself to others is to make sure you are complete and whole to begin with. And always look for ways to...

Keep it in perspective.

Thursday, August 2, 2007

The Amazing Brain

This is the brain of the beautiful and amazing little boy from the last post.

On Monday, July 30, 2007, he had his 7th seizure. The first since March 11th. But this one was different. He was conscious, responsive, trying to talk, and regained head control during the seizure. This is an image from the CT scan they did at the hospital. It should be all gray in the middle.

If I knew how to do it, I would put a picture of his first MRI on here for comparison (all I have are films). Just look at this one and imagine mostly black, outlined in a thin layer of gray, with the white on the outside. The gray is the brain matter, the white is the skull, and the black is fluid.

Is it any wonder they said he would most likely be a vegetable? And yet there he is. He laughs, sings, talks, signs, plays, and makes jokes. Physical development has been slow, but even that is improving.

I don't question whether or not there is a God. Only He could create such a complex and delicate organism. It defies all understanding and controls functions we don't even think about. Intelligent design requires an intelligent creator.

Needless to say, the doctors at Children's Hospital were stunned to see how much improvement he has made over the last 2 years. They were also very pleased with his high functioning skills. The neurologist's jaw dropped when I told him that Stephen had signed "Momma, turkey", then when I asked him if he had just called me a turkey, he smiled and signed, "Yes."

Psalm 139:14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Philippians 4:13 I can do everything through him who gives me strength.

Monday, July 30, 2007

Just your average post

I am not very happy tonight. Some not so nice things are happening in our church and I am quite sad about it. I need to take some time to gain proper perspective.

So, instead, I thought I would share a couple of pictures of my Sugar Monkey that were taken back in May by my friend at Chelfspace. I "stole" them from her blog with her permission. Thanks Chelf!


Wednesday, July 18, 2007

The Courage to Live

So often, I find myself caught up in the tedium of life. Another load of laundry, another sink full of dishes. Did my kids get their schoolwork done? Did I remember to pay the electric bill? I wish I had enough money to remodel my kitchen, or I wish I had more time to exercise.

We go along doing the same old thing, never suspecting that it could all fall apart in the blink of an eye.

About a month ago, that blink happened to my sister and her family. They were trying to decide what color pavers to put in their garden. Should they match the stained concrete or the brick? Suddenly, none of that mattered as my brother-in-law started staggering and drooling out of the side of his mouth. Jen and the boys started laughing, thinking he was playing around. But as fear filled his eyes, she knew it was serious. At only 31 years old, Darrel was having a massive stroke.

The irony was that the following day was the 9 year anniversary of Jen's diagnosis with a brain tumor. Her boys had almost lost her, and now they could lose their dad.

Do I have the courage to get up and live every day as if it were my last? Do I take the opportunity, no matter how small, to savor life? Am I moving down the path that God has set before me, or do I merely sit and complain about the bumps, the holes, and how bad my feet hurt?

It isn't always easy to see beyond ourselves. Inside, we can be safe and in control. But if we are always looking in, we will miss the glory of the world around us. Take it in, embrace it, and have the courage to...

Keep it in perspective.

By the way, Darrel is doing very well, and is expected to make a full recovery within six months.