Thursday, August 21, 2014

Brokenness, Beauty and Pain

Hello again blog readers. I know I haven't written in some time. But I need to start again, else I'll go crazy. So Traci and I are now the parents of four beautiful sons. Three of whom are affected by Hartsfield Syndrome. We have made genetic history again. Though it's a lot simpler when you realize your odds are 50/50.

Collin was born August 13. So we kept our August birthday streak alive, but his is ten days after the other two. When we got pregnant last year, I remember Traci taking a pregnancy test as a lark, when I kept telling her she had to be pregnant. She came out of the bathroom, holding the test and looked at me and said, "Now what do we do, I took the test so I could tell you to leave me alone about being pregnant."

A flurry of anxiety hit both of us, but then I said, "Well don't worry, this baby will surely be a typical child, and be a spark of fun and humor like Matt." Then it came time for ultrasounds. Traci and I were excited because at one of his first ones it clearly looked like he had five budding fingers on a hand and was waving at us. But course, the more ultrasounds we saw, the more brokenness we saw. But yet we held out hope. Maybe he would be so mildly affected we wouldn't even have to deal with any issues.

 As I said Collin took his first breaths at around 5 o clock, on the 13th. We soon discovered he would be no easy case. Though he does have a full complement of fingers. His cleft is more severe, he has an as yet undiagnosed lump on his nose, either it is a proboscis, or an encephalocele. So he either has a lump of spare nose parts or brain matter clinging to his face. Awesome.

It's been a struggle trying to find time to be at the hospital with him, trying to find time for the other three, trying to find a moment to breathe and process and thank God for the new life he has given us charge over.

Admittedly I haven't done a whole lot of that last one. Being a parent is supposed to be the greatest gift we have We participate in the Fatherhood of God Almighty. Why is my participation such a struggle. Why are we the ones force to find beauty in the broken.

I've written before about understanding Simon the Cyrenian's place. Being forced to do something you don't want to do, that will have a great impact beyond yourself. But lately it just feels so much more like just pain, there is no beauty in the sandbox, it's full of glass, full of broken pottery, discarded like yesterday's breakfast.

Last year when we found out about Jake I leaned heavily on the song "Nothing is Wasted," by Jason Gray. The song essentially says that no pain, no moment in your life is wasted, That Christ will put the pieces all together and make you whole one day. The song spoke so clearly to me, the circumstances of my first hearing of the song, all seemed like He had written the song specifically for me.

Interesting side note about young Collin he is essentially named after Collin Raye, the country singer. One day I was listening to a CD of his, all religious songs, and I thought the name Collin Michael. I came home and told Traci, I had a great name for the new one. Over time she fell in love with the name as I had. It seems kind of fitting it wasn't long after our meeting Mr. Raye, that she found out she was pregnant.

But Lord this one hurts. I even entertained the idea of a vasectomy, I was in so much pain after hearing another Hartsfield diagnosis. Traci had a down moment herself the other day, as we sat in Collin's room, she was so very sad and asking why his soul couldn't have gone to a family that made "normal children."

I told her that his soul had been a part of our family since before time began. That, I do believe. Collin's theme song has been "I Get What I Need," from our good friend Collin Raye. It's a song about how sometimes we pray for things, anticipating getting one thing, but then God gives us something else, which in turn produces the desired result, but not from the way we wanted it.

I guess this is just me whining and complaining about everyone else's garden looks so easy to tend and yet ours is so, so difficult. My sons are beautiful, all four of them and I wouldn't want to not have any of them, yet the pain, the sleepless nights, the sadness all take their toll.

You really shouldn't have to worry about outliving your children, and yet I do. To the point the idea has kept me up way too late too many times.

One bright side perhaps is that Matt seems much less terrified of Collin than he was of Jake. It took quite a while last year for Matt to go near Jake, but this year, before the summer cold of doom, gripped us the times he did see his new baby brother, he pronounced him as "Cuute." 

That kid has become my sanity, it's a hell of a lot to put on a four year old. Too much. So I don't tell him that, I just frequently take him with me when I do even the most mundane of errands.

Thursday, March 6, 2014

Simon the Cyrenian and Me

Simon of Cyrene helping Christ carry the cross
I came to an interesting realization the other day, I am a lot like Simon the Cyrenian, pressed into service to help another person carrying their cross. I had this realization after a Facebook thread with Shameless Popery's Joe Heschmeyer.

The comment that sparked the notion was Joe telling me he admired how I had borne my crosses in life. To me I guess I've never really thought of them as my own crosses. I suppose it helped that after Tommy was born I was praying a Rosary. Meditating on the sorrowful mysteries and during the decade for the carrying of the cross it hit me this condition is Tommy's cross.

Even with that I had never seen the connection of myself as the mysterious Cyrenian pressed into service aiding Christ on the way to Calvary. But driving home the other day the analogy just hit me. Now in some ways perhaps you think I am overstating the importance of Tommy or Jake, I don't think either of them are God Incarnate, but I do think they have an important role to play in my own salvation, if nothing else.

I've become a better person and a better husband, because of my children. I've also become a better believer. That belief has been hard won. There have been many times I have been ready to give up on faith only to have those little moments that reconfirm it all for me.

Of course it used to be all about Tommy, but then we had Jake, and became famous (anonymously) once again as we became the first family to have a repeat of a Hartsfield diagnosis. Jake is an awesome little dude, but it has been a challenge, dealing with the diagnosis through the pregnancy, having to tell the doctors to can their "we can terminate this pregnancy" speech. But again, the crosses we had to bear sort of ended once he was borne, and now we are helping him to bear his cross.

I've always wondered about Simon, he gets about a sentence worth of recognition in each of the synoptic gospels (Mt. 27:32, Mk 15:21, Lk 23:26). Pretty short shrift for a guy forced into essentially keeping the Son of God alive long enough, so that they can kill him how they want.

Who was he? What happened to him after this experience. Did he believe? Before/after?

All we know is that in one of the absolute worst moments for Christ, he was the one to help bear the burden. Yes he was pressed into service, but he took on the obligation, fulfilled his duty.

Being a parent in some ways is like that, I mean at least hopefully, you aren't forced into it. But you do have to help your children bear the burdens of growing up. Even if your children aren't special needs you do everything you can to help ease their troubles.