Update from Julie

I want to thank you all for your prayers. Please continue to lift us up when you think of us.

Since Christmas Day, I have felt less sadness and more acceptance. I still do not want our situation but I realize that it is here to stay. The more time I spend with Jonathan, the more I fall in love with him. Sadness comes when I think of all the challenges he might encounter in the future. Anxiety hits me when I think about that tiny chest being opened to repair his heart. I do struggle with sadness but not like I did at first where all I wanted to do was cry. Now that the holidays are over, Jamie is at work, and family has gone home, I am busier and my mind is occupied.

I notice myself peering into Jonathan's eyes, wondering how a child who looks so alert and typical can have this condition. A nurse in the NICU warned me that I would feel this way. She said that he would function like any other baby and I would think the diagnosis was wrong. I wanted to say, "Hey - thanks for those encouraging words. What else have you got?" and walk away. However, I am glad she spoke them because they have resounded in my brain a million times, reminding me that this is not a dream and the DS is not going away. I do hope for a mild case yet wonder if the other symptoms are just hovering under the surface, waiting to emerge in severity.

I do find that I harbor tremendous anger that my child was not born completely healthy. My anger is not noticeable to everyone - I can simply feel it bubbling below the surface. Our circumstances are just not fair. I know, I know - who am I to expect that we be given a completely healthy child as opposed to someone else? I keep wanting to say to God, "Look at all I did for you and this is what I get?" Unfortunately, that is a reflection of my poor understanding of God and how He works. Bad things happen to everyone. Being a Christian is no guarantee of being protected. I know that in my head but find I do not truly believe it in my heart. I can do nothing to earn rewards yet that is how I have lived my life - I thought that I deserved all the blessings I received. I am still struggling with the fact that my "good deeds" did not immunize me or my family. I want to point the finger at other people and say, "Remember how they hurt me? Aren't you forgetting something?" among other choice words. And if not for me, then for Jonathan - he did nothing to deserve this. I have never had anything permanent like this happen to me. I did nothing to provoke it. I am still working through those feelings.


Please pray for Jackson. He developed a stutter over the holidays. Stuttering is quite normal for his age but I am concerned that he is responding to our stress and anxiety even though we are doing our best to function normally. Please pray that he would feel safe and loved. Pray that if there is a trigger for the stutter, we would identify it and eliminate it. It simply breaks my heart to know he is a casualty in all this.


Despite the yucks, we are laughing - something I was convinced of a couple of weeks ago would never happen again. Jackson wants to hug and kiss Jonathan all the time. For some reason, out of the blue, Jackson said that Jonathan was "Gilbert the cat" from this PBS show that he rarely watches... Jackson is also incorporating movie lines into his conversation and will say, "Woody says that" or "Buzz says that." He re-enacts scenes from Toy Story with his miniature Buzz Lightyear figure... Jonathan throws up on occasion if we have fed him too much. Jackson, of course, has witnessed this. Last night at dinner, Jackson spit out some of his lemonade at the dinner table. I got on to him and he broke down in tears saying he wasn't spitting - he was just throwing up like Baby Jonathan. I was not quite sure what to say at first. Then I began to sermonize on what a lie was and how we should not tell them.:) Jamie and I laughed over that one... Potty training. Need I say more? Jackson has been able to use the toilet for about eight or nine months - he chooses not to. He wants to sit in the dirty diapers and gets mad when we try to change them. He will look at me midway through a "job" and say, with glazed-over eyes, "Mommmy, I am not going to use the potty." What do you do with that? I have heard if you force it, they just dig their heels in harder. Or, he might get on the toilet, sit there, demand that I entertain him with made-up stories or books, the toilet runs, he thinks the noise counts as "tee-tee," he hops off the toilet, and then he demands skittles or M&M's. Nice. I told Jamie since he is in sales, it is his job to sell this concept to Jackson - perhaps his most difficult client yet.


Again, thank you for your prayers. We need them. Jonathan sees the cardiologist this week. We pray for good news!