My Fear

One of my favorite rides at DisneyWorld is the Rockin' Roller Coaster.  I love the twists and turns, unexpected in the dark as Aerosmith blasts in your ears.  As one of my friends has said, "I like roller coasters, but there is a reason they are only 2 minutes long."  I am totally understanding that sentiment.  There are highs and lows with raising any child, but those highs and lows are seriously dramatic (and often in the dark) with Matthew.  I'm ready for less Rockin' Roller Coaster and for more Goofy's Barnstormer Roller Coaster (which has to be less dramatic, it is in Toontown!). 

This week's high-- The cardiologist called Wednesday with the results of the halter from 2 weeks ago.  Matthew's heart rate has gone up, now averaging 119 (compared to 70 before) with a low of 69 (compared to 38 before).  I thought this was good news, but the doctor stopped short of saying that.  He did say there was nothing of concern.  I'll take that as good news.  As well, Matthew has gained almost 2 pounds since the PDA fix 4 weeks ago.

This week's low-- Matthew's eating issues have returned full force within the last few days.  He sweats when he eats, he takes about 1/2 of the amount he took 2 weeks ago, and he's fussy at feeds.  We were hoping it was an ear infection, but it is not.  Our pediatrician suspects it might be his heart, which is our fear.  Like before the PDA fix, Matthew's spleen is enlarged again.  We had a chest x-ray today and thankfully there was no substantial change in his heart in the last 2 weeks.  So, now we'll just wait the next 12 days until our next cardiology appointment and hope that the feeding issues resolve themselves before then.  We can hope!

I have been told that my posts may be painting a rosy picture of Matthew's journey, that they are more 'technical' and less 'emotional'.  I doubt that will be said of this particular post.  I'm tired of having this pit at the bottom of my stomach, but I'm afraid of saying I want it to go away.  I'm afraid of saying I'd like the roller coaster to slow down or stop.  I'm afraid of asking for life to become easier because I'm most afraid that would mean losing my sweet baby Matthew.  I know everyone who knows us, who reads between the lines of my posts, knows what I don't typically post.  You can read the laundry list of Matthew's uniquenesses and imagine what is in our hearts and minds.  I often allude to it. We hope that Matthew can overcome all and grow into an amazing adult but we also fear losing our precious gift that is Matthew and know that is a possibility.  I wish I had unshakable faith but my faith is shaken almost daily.  I know and have seen all around us that life isn't always beautiful.  That is my fear. 

I'm reminded of those early hours the night after Matthew was born, after we noticed his missing thumbs and before we knew any of the other issues.  I sat there holding my squishy little day old baby, scared beyond comprehension.  I was reminded then that no one is promised a tomorrow.  The only moment we are promised is the moment we have now.  I know this and I am trying to relish today and be thankful for it.  But I'm selfish, I want today AND another 25,000 tomorrows with Matthew.  I want to see him grow into that amazing adult but live in fear that I may not.