Memorial Day 2009...and a Hopkins update

Our Memorial Day was quiet. We chose to spend it quietly, with family. And it was nice. Some of the family came over for a late afternoon cookout, with Richard's famous ribs as the highlight of the meal, and the many sides to accompany them: potato salad, cole slaw, macaroni and cheese, homemade rolls (yum!), baked beans and corn on the cob. You know summer is quickly approaching when you start eating corn on the cob! It is one of the signs of warm weather and cookouts and vacation and no school. Let me tell you, the food was fantastic, but the company was better. It is just nice to get together with family like that every once in a while; to sit and talk and laugh and catch up. And then there were the drinks...

Now, I am not much of a drinker, but we did make some fruity Raspberry Fizz drinks: one shot raspberry vodka, one shot raspberry schnapps, 7Up and a fresh strawberry to top it all off. Man, it was good! Maybe too good. Like it went down too easily and tasted too good. But it was fun to try something new. I think that will become a new favorite at family get-togethers to come. Anyone second that?

Coulby and Caroline could not have been more excited about the family coming over, but were especially excited to wave their American flags (or Americal flags, in Coulby terms) around. They do not know the meaning of Memorial Day yet, but some day they will. We will teach them to honor our servicemen and women who fight for our freedom. And we will teach them how their own relatives have fought for freedom in wars fought long ago but never forgotten. There is honor in being an American, and I hope they always want to wave their country's flag so high!

I hope everyone else enjoyed their Memorial Day, and better yet, celebrated with family and friends like we did. Such moments are a blessing.

We ended our Memorial Day celebration to gear up for a Hopkins appointment today. Coulby had a routine appointment with blood draw this morning, and we are always tense until we get that ammonia. It was 44 today...breathe again! Although I like it to be in the 30's, I will take a 44. Coulby apparently lost some weight, which I found hard to believe with the new belly he is donning, but he did get a little taller. His caloric intake has been phenomenal (almost or just above 2000 calories a day!) and he has been eating like a champ. I think he probably suffered some weight loss when he was sick with pneumonia, but it seems he is well on his way to gaining it back. Overall it was a good check-up and we returned home, which is the outcome we always pray for.

Thers's no parenting manual?

I often question my parenting. Am I too laid back? Am I too hard on the kids? What do I do now? Am I teaching my children well? What if I screw them up? I suppose it is natural to have these thoughts as a parent, but they plague me because this is something truly important...okay, so I am the master of the obvious! But seriously, I want my children to grow up with good morals and manners, self-confidence but not arrogance, the ability to make good choices out of respect to themselves and others, compassion, ambition, sensibility, a drive to succeed (but not to the point where life is nothing but work, work, work!), an openness to allow their hearts to love...I guess pretty much what every mother wants for her children. And I am afraid to make too many mistakes. But where is my manual?

Working with preschoolers prior to having my own children gave me the experience I needed with young children, but could never have prepared me for having my own. No one could tell me what to expect when I was expecting, and honestly, I really did not want to listen anyway. I knew it would be an experience that I would have to go into alone, and that only becoming a parent and experiencing it firsthand would teach me what I needed to know. I only hoped that I could use some of what my parents have taught me that has helped me in my life and mold it into my own parenting skills. I guess I have done that, but it is not enough to put my mind at ease.

I know the world is a cruel place, although I love seeing it through my children's eyes. I love to see the innocence and the trust that only a young child can experience from lack of experience. That is never something I tire of. But I know I must do my part to prepare Coulby and Caroline for the world that is waiting for them, which is often not at all what I would like it to be. True, there is good in this world, and I have experienced and witnessed it firsthand. I want my children to be people who bring even more good into the world. Even just two people can make a difference. And I guess that is what bothers me so much. That I am responsible for guiding them into adulthood to become the do-gooders that I want them to be.

Every time I lose my patience I feel like I have let them down. When I am not paying enough attention to them, or when I do not seize a moment to enlighten them, or I miss a praiseworthy moment, I feel like I am letting them down. There are so many times when I have let an opportunity come and go and then I later wish I could turn back the hands of time. The reality of it all is that this is going to happen no matter how hard I try to keep it from happening. Because I am human. And I am a mother. And both of these realities are against me because neither humans nor mothers are perfect. Although some of us like to think we are! Ha!

I have learned that there is nothing I can do but try my best to be a good mother and person, and hope this will result in two kids who grow into a beautiful young man and woman. I see their personalities coming out more and more with each day that passes, and I see the person each is becoming. I smile when I get a "please" or a "thank you," or when Coulby or Caroline go out of their way to do something far beyond their years. I guess those are the moments to cling to. Those are the moments to build upon.

As I drove Coulby around on my father-in-law's newest toy, a gator, the other day, he looked at me with this smile on his face that just showed how pleased he was to be riding beside me; just the two of us. He said, "I love you, mommy," which made me just about break down in tears. Just the simplicity of it--that he was feeling that way at that moment and expressed himself without prompting or hesitation was enough for me to feel like maybe I am not doing such a bad job after all. Of course I am sure that one day I will hear the, "I hate you, mom," that so many mothers before me have heard, but I hope that it will be because I am making a decision that he will one day thank me for, realizing that it was in his best interest. I have been there myself with my own mother, who did not always make the most popular decisions, but always made them with me in mind, as I discovered later in my life. And how did she know she was doing the right thing then? I guess maybe she was winging it too, just like me. So maybe there is hope after all...

Illness Be Gone!

This is Coulby's new look...what do you think? He has been sick yet again with a cough, runny nose and an on and off fever for four days straight. Not fun. It seems like we have one healthy week for every three sick weeks. Not fair. Since Coulby had a fever even yesterday morning, we decided we should take him to see our local pediatrician. This was not something that required a rush to Hopkins (whew!), and in such cases we see the pediatrician and consult with the geneticist and dietitian.

Honestly I did not expect the pediatrician to be able to do anything for a persistent cough, so when my husband called and said the doctor thought Coulby has pneumonia, it took me a minute to process what he said. Coulby was given Albuterol via a nebulizer, and prescribed two antibiotics to wipe it out.

Of course I spoke to Coulby's geneticist about his diagnosis and prescriptions, and she seemed to think that from a metabolic standpoint, Coulby was handling this illness just fine. She was not concerned, therefore I was not concerned. It is just another illness to deal with, and we have had our fair share this season. I think we deserve a break! But I am thankful that Coulby is HOME through the whole ordeal and not in a hospital bed. Another blessing. I never thought my son would be able to weather so much from the comforts of home.

As for the photo, Coulby absolutely LOVES his new mask, and thinks it is cool that he can blow smoke "like a train." In fact, he keeps asking to "do his mask." At least it is a novelty for him...for now!

In Bloom!

Columbine


Bleeding hearts


The last several days have been nothing short of depressing, with steady rain ALL DAY and all of the dreariness and gloom that comes with it. I really do not like the rain, but I do like the way it helps all of the world's most beautiful things to grow and grace us with their presence. My mood has been sour lately, in part because of the rain, and I have been struggling to fight away the doom and gloom. My allergies are flaring and I have a constant headache (you know the kind where all of the pressure sits right at the bridge of your nose?); my kids are going stir crazy being cooped up in the house all day, and we all know that means I am experiencing more hair-pulling moments than usual; and I really want to do some outside work and get my hands dirty.

You see, I have taken up gardening and landscaping in the last several years, and I really miss digging and weeding and planting. It relaxes me more than I ever thought it would. When I was younger I used to wonder how people could work in their gardens all day and plant and wear those ugly gloves and kneel on those silly gardening knee cushions. It seemed like such a dorky thing to do at the time. So I never envisioned myself actually enjoying it. Now it is my passion and I have joined the ranks of the dorky gardeners. I honestly think I could spend all of my days gardening. I kneel directly in the dirt because I cannot bring myself to use the knee cushions, and I have found that not all gardening gloves are ugly. I actually have a really cute pink pair, and I have seen some really great (and expensive!) patterned gloves. I have just been surprised at how gardening has taken a hold of me.


When we were building our house, I had no visions for future flower beds. But when Spring broke, I knew we would need some plants (and grass) because all that surrounded our home was dirt and lots and lots of rocks! So I went to Lowe's and purchased the first few plants for our home. When one of the plants almost died immediately after planting it, I dug out the mulch around it, gave it some TLC and water, and it made a comeback! I think that plant was the reason I got into gardening. Because I realized that I was capable of doing more than just killing plants.


And so it started. I found a nursery--a really nice nursery--and started buying more plants. It did not take long before I was a "frequent flyer" at the nursery. My beds have expanded and each time the weather breaks and Spring comes, I look forward to seeing the plants at their best. In their glory. In full bloom! Of course, I still find places to plant more and more to create new flowerbeds. I do not think I will ever get tired of planting and watching my plants grow.


So when the rain broke for a short time today, I jumped at the chance to get outdoors. The sun was not shining and it was not particularly warm, but it was not raining. Not a drop, nor a drizzle...nothing! It was so nice to get outside and breath the fresh air. And the kids were pretty happy, too! I wandered around the house looking at all of the plants in bloom, and realized that I have nothing to complain about or any reason to continue entertaining my bad mood. All of the beauty reminded me of everything I have to be thankful for. Almost every plant tells a story. The sedum were transplants from my (paternal) grandparent's house, dug out right before the house was sold after my grandparents were reunited in Heaven. The lilies came from there too. All of the azaleas were transplants from my parents, including one that came from my (maternal)grandmother's house. One of my mums was given to me at my baby shower when I was expecting Caroline. My burning bush started as a twig and came from my husband's late grandmother's home. And all of the lilac also started as sticks in the ground, taken from my in-laws' abundant lilac bushes. You see, my gardens are more than just plants to me. They have meaning, and in a way, I feel a part of my loved ones lost still live on.


If you have never gotten into gardening, try planting something this Spring. Even if just one plant. And something easy, like an azalea, sedum or a rhododendron. Take care of it and see how rewarding it is to watch it thrive and grow. You may find that you really enjoy it and want to add more plants. The best part is when next Spring rolls around, you will be greeted by new growth and blooms as a result of your two hands putting that plant in the ground. If nothing else, you will have positively contributed to the environment.

*Check out more of my blooms in my photo section along the right hand side of my blog page. I would love to see photos of your gardens!*

5 years ago...

I remember how badly I wanted a baby before I was pregnant with Coulby. It was an indescribable emotion. Not like, "I think I am ready for a baby," or "It would be nice to start a family." It was more like, "I want a baby NOW!" My husband was a little less driven because we had not been married long before the plans for a family were set in motion. Despite his initial uncertainty about timing and diving into such a huge decision, my hubby and I were blessed to become pregnant right away and very excited to add a third member to our family of two.

I went through my pregnancy just like most other women do: with the usual excitement, uncertainty, anticipation...oh, let me just put it in "real" terms! I was excited and scared to death, in awe of what my body was capable of and horrified at how large certain body parts had become, loving preparing the nursery and wondering how we would afford everything for our baby (have you seen the price of diapers these days????), loving watching how my belly was growing with the life growing inside of me and looking forward to wearing clothes without elastic waist bands. I had a great first pregnancy...if I dare say, it was perfect.

On Saturday, April 25, 2009, all of these memories came flooding back to me. Of how badly I wanted a baby, of all of the emotions surrounding my pregnancy, and of how perfect my pregnancy really was. And of how horrific the aftermath became. How devastating it was to have such a great pregnancy only to find out there was something wrong with my baby boy all along. All of those emotions came back, too, as we celebrated Coulby's 5th birthday. If you had told me on April 25, 2004 that my life with my newborn son would consist of a medical vocabulary with Citrullinemia at its root, medications completely foreign to me, scales, a food values book, a daily log of my son's protein and caloric intake, and an unwanted familiarity with Hopkins and its staff, I probably would have looked pretty dazed and confused. And that is exactly how I felt when I was told these things only 4 days after we brought Coulby home from the hospital.

I really did not know what to expect in the years to come, or even if I could expect to have years to come with my son. The doctors at Hopkins gave us little bits of information at a time, and it always seemed that it could not get any worse until they gave us a new piece of information about Coulby's life with Citrullinemia. I think I walked through a daze for most of those days that Coulby spent at Hopkins as a newborn. He laid in a hospital bed hooked up to an IV and wires, wires and more wires when I was supposed to be holding him in the comforts of my home welcoming him into our family. I missed out on all of the newborn stuff with Coulby. That still saddens me, but I look at that time as a blessing, too. Because I can now look back and see how far we have come. How far Coulby has come. How he has grown and thrived and far surpassed what we expected from him as he laid in that hospital bed 5 years ago.

Celebrating Coulby's 5th birthday (and his daddy's 30th!...yes, on the SAME day) is a huge deal because I know where we could be based on what we were initially told about Citrullinemia. Coulby is a miracle. A true blessing. And he has taught me so much in the last 5 years. I see his strength and I hope that I can be that strong. I see his perseverance and I pray that I can overcome obstacles with such grace. I see his drive and I realize we have come full circle. It comes right back to my drive to have a baby; to have Coulby. He is driven in everything that he does in his young life. Honestly, while most people are trying to tame that kind of drive in children these days (like in the school system, as I have found), I encourage it and find ways for Coulby to channel it in positive ways. That does not always make my life easy as a mom, but I figure it will be worth all of the frustrations and hair-pulling moments. It already has been!

So I guess my blog today is to remind myself of how blessed I have been in the last 5 years to have Coulby in my life. I am reminded every day when I see Coulby learning something new, or when he tells me one of his fun make-believe stories (which are becoming more and more elaborate and detailed each day), when I watch him climb the steps of the school bus to go to school. Or when he sneaks into my room in the morning after daddy has gone to work and says, "Hi mommy, can I lay with you?",as he snuggles in beside me. My baby. Even though he is a big 5-year-old now, he will ALWAYS be my baby!

*Oh, and what better way to celebrate Coulby's 5th birthday than with a train cake? And I am not one to brag at all, but I made his cake! I do not take full credit, because I did get some ideas off of the resource of all resources: the Internet. I stayed up until 4:30 a.m. making that cake, and it was worth every second. Coulby loved it!*