Monday, January 11, 2010

In my lap

sleeps the little munchkin who has kept mommy worried for months on end. He's wearing some adorable "new" jammies from his cousins...a soft red PJ shirt with a spaceship and blue striped pants. You all know I have a weakness for striped pants! (I loved how a friend sewed striped leggings among other clothes for Mary Clare's doll as a birthday gift!) His soft blonde hair smells nice and clean; Daddy washed out the purple glitter glue that kept it spiked all afternoon. His little cheeks are soft and rosy and I just want to snuggle him tight!

Even though I knew the doctor said that the defect wouldn't affect his health until adulthood, I couldn't help but be concerned. Were his lips blue? Was he coughing because his lungs were strained? Was he going to wheeze to death? His heart seemed to be pounding so fast. Should I take him to the doctor? What if something was wrong with his heart? I would think about how the year would be affected by his upcoming surgery and was obviously anxious about the appointment. I had a little breakdown the night before. Poor hubby didn't know what was wrong with me; it didn't even occur to him that I would be nervous about this.

I was so thankful that all the prayers kept me calm that day. I was able to somewhat enjoy our First Friday preschool class and pull off a half hour of "filler" activities when we finished early. We had a special Chick-fil-a treat, then Steven and his mom arrived home, for some time to visit with my mother-in-law and help the girls open their special presents. But the clock was ticking! We made it to the appointment early and I told the receptionist that we had a sleeping toddler so it would be great if we could get in for the echo quickly.

Well, turns out Dr. R didn't even want to do the testing! I forgot to ask him what had changed between last spring and now, when he had told me this appointment would include all the scans and that this year would likely include the surgery. He listened to Steven Joseph's heart for a long time and then spent a very, very long time explaining his condition to Steven and I. He drew out the heart, answered all our questions, showed us a video of the previous echocardiogram, and printed out the reports for us to have.

He explained again how this condition would probably not affect Steven Joseph until middle age, around his late 40s or 50s! Which of course makes me cringe that we have to put him through the surgery so young, not even knowing what kind of technology there will be 40 years from now! But he also explained that they routinely correct these defects before children are school-age because they are so successful. I have had two old friends comment about how they had this surgery at age 3 and 4 and only have positive memories. That is so encouraging to hear!

So...when others ask how I feel about this...First of all, relief. I'm very happy that 2010 will not likely include open heart surgery for my sweet baby. I'm thankful his condition is not more serious or urgent and that he should live a totally normal life. I'm so glad to have it acknowledged that his health is no more in jeopardy right now than any other child his age. I don't need to worry about him like I have been.

But still, I know what open heart surgery is like. I've watched other families go through it. It still scares the daylights out of me. And I cringe to think of handing my healthy child over, whether it's in a year, two, three, or more. My mind prefers to put these thoughts at the back of my head for now. We are still praying for a miracle from John Paul II, even though we know there are much sicker children in greater need of healing. This week our friend Hans is in my heart as he continues to fight Neuroblastoma cancer. There are so many others...

So there was positive news, there was "bad" news. I feel relieved, but not happy, if that makes sense. I am optimistic about what this new year holds for our family. I pray I can find more peace and less anxiety in motherhood. Just last night I had at least 3 nightmares, and find myself having one worry-free day followed by a worry-wart day! I pray that we can now focus on some of the other less-urgent medical finger eczema flare-up, the kids' check-ups, and hopefully finding a new OBGyn who I trust, another big source of anxiety for me. I'm thrilled that our new godson will be arriving any day and am happy that we are back in the homeschooling routine.

We've been enjoying some fun things on the net...Little Capucine can always make us laugh, we can't get enough of Bella singing, we're thrilled that Austin is home, are following the growing Rose garden, so joyful to read of a new adoption, reading about our friends' Christmas Hawaiian trip, and fascinated by the chill in other parts of the country! I hope to write some more articles soon, and to continue on my crafty streak! I'll also share some of the crafts of the past weeks...lots of fun!

Thanks again for all your prayers and concern for our family in this little trial. God bless you all in 2010!


JulieC said...

He's so beautiful!! I'm glad for your good news and will continue to pray for that miracle. Call me and we can talk about my OBGyn. I love him. Kerrie switched last minute with Jude. He's always very supportive for my decisions with all my female problems. He's really great!

Neen said...

Your words do take me back to the longest summer of my life. In so many ways I believe that finding out about Morgan at 6 years of age (when they most like to do open heart surgery) was helpful. We struggled to just keep things normal for a few months.

I found so much hope and peace when someone reminded me that this would not keep my child from heaven. Blair, I know that you and your husband desire heaven most of all for you son. Try to focus on that and how this can help him reach that goal instead of his current health. I do understand how hard this must be.

I know that Jason and I are better parents for having gone through this together. I know that my family is closer after this issue in our home. Begin to teach your little man about heart issues and doctors. Add this into your lessons. I would also try to visit the surgery center (the recovery floor) at TCH. You will see children running, playing and laughing. Some have tubes and some are slow moving but they are happy and joyful and seam to know God. Helping others in your situation might take your focus off of why. We can talk about ways we can help the heart babies at TCH.

God only gives these issues to HIS special children. I know it!

Melissa said...

I was so so nervous trying to find a new caretaker for my first birth in canada. I LOVED and trusted my Dr in the states, he was a family friend and I couldn't imagine being able to find anyone else I would like. After initially being set up with a midwife that didn't support my values at all, I was able to switch around 20 weeks pregnant and I loved the midwife I ended up with! I was so upset about it all, but God had everything arranged all along. :)

Lindsey said...

Blair--I cling to the words the priest says in the mass at the end of the Our Father: "...protect us from all anxieties, as we wait in joyful hope for the coming of our Lord, Jesus Christ." I will make it my prayer for you, too.

Devin Rose said...

Thanks Blair!

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