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.

The R Word and the Day I Nearly Lost My Job

Let me start this post by saying I used to tell people I didn't have a problem with the R word. You know the one, rhymes with guard.

Well I found out a few days ago I have a real problem with it. I still say I don't have a problem with the word used in a clinical setting to describe the proper condition. Mind you I still bristle a little at it being used as for Tommy, because it won't fit properly once he can tell us what he knows.

Anyway on to the real story.... At work there is a young kid (well he told me once he's 25), but he's still a young kid. Let's call him Mumbles. He and I don't necessarily get along well, but he stepped way over a line. Before we start work we do a little stretching and whatnot.

We were doing that as our supervisor was handing out some of our daily paperwork. Supervisor guy said something that I felt needed a wise ass remark (hey it's what I do, especially at 5:30 in the morning). My remark led to some sniping back and forth between Mumbles and I. Fine whatever it's a warehouse this happens, no biggie. Well after our stretch and meeting are done I go over and bring some carts. Quick job overview basically what I do consists of filling big totes of food, putting the totes onto carts, which loaders then put on trucks.

So anyway I come into the cooler and see Mumbles peeling load stickers and filling his rate sheet. (That's how they track our productivity). I look down the aisle in the cooler and see that I won't be able to pull the carts where they need to go because there are six or so pallets of totes blocking everything. My mood of being a little aggravated shoots up a couple notches.

Still no big deal but since I am already angry I jump on Mumbles... "Why are you peeling stickers when we can't work until those pallets are moved. How stupid can you be to not notice them, or are you just being lazy."

He came back at me, funny thing I don't even remember what he said here just that it certainly didn't defuse my anger. We continue going back and forth only now I had to step off my tugger (The machine we use to pull our carts) and get the pallet jack and move stuff. Seriously angry now. Probably continuing to chew his ass out more than I need to, but I am pissed.

So I'm pulling a pallet along wondering aloud how he can breathe and walk at the same time, when he drops the bomb. The R word. Ok, Whiskey Tango Foxtrot.

Why did he have to go there.

Verbatim this is what he said. "Mike, don't be a retard like your son."

I drop the handle on the pallet jack take about a step and a half to close the 10 feet between us to about two. "What did you say? What the F (Oh I used the whole word) did you just say?" He repeats it, thus ensuring I was right he had just laid that word down. "Don't ever let me hear you say that word, ever again!!!!!" I was hot.

My hands were at my sides but my fists were clenched and ready. "Mike are you going to stop trying to intimidate me so we can get to work. Because if you strike me you will be fired."

What kind of weasel says strike in that context, anyway. Say hit. Let me tell you it took everything I had to keep from "striking" him.

Even now a week and a half later my fists clench as I write the story. I almost wish I had hit him, if for no other reason than when I got home and told the story to Traci, Tommy became visibly upset. I let it go that day, should have turned around and went right to my boss, but I did tell him and HR the next day.

Mumbles still hasn't apologized, further proof he is a little boy not a man. A man would nut up and say hey what I said about your son I'm sorry. So ultimately, I guess I do mind the R word. I mind it very much.

Five Years of Fatherhood....

"A child arrived just the other day..."  (If you are just tuning in start with this post)

Ok this won't be some weepy post on how I haven't been there for Tommy, or even Matty. Because I have, maybe not always well but I have been there.

I just can't believe Tommy turned five as we closed the page on July...Five years just seem to have gone by so fast.

I have seen so much from him in five years, I have learned so much: from how to advocate in a gently non-threatening way to meet his needs, to let go and trust the hands and experience of others, he has taught me so much.

He continues to bring everyone who meets him joy. He is such a happy darn kid all the time. I wish I could bottle and sale his positivity and happy nature.

I think most of what I have learned in these five years is that Tommy is who he is not because of anything Traci or I did. Seems like it should have been an easy thing to learn, right. It was surprisingly difficult. I still have a lot of times when I watch Matt do something and I start thinking how awesome and smart he is. Then I start feeling guilty because I am enjoying him doing something that his big brother can't.

I suppose that's probably normal some sort of survivor's guilt or something. It's been awesome since we moved to Minnesota though because the doctors at Gillette seem totally invested in finding ways to help Tommy achieve things.

Since we moved/started seeing docs at Gillette Tommy has really turned into a rolling machine he can roll onto his tummy, seemingly any time he wants. He is such a ball of energy and it seems like we might finally be starting to break his tone enough to allow him to do some things.

Seriously though its been five years. Seems like it was just yesterday. I still remember telling the helicopter crew there was no way I wouldn't be on that helicopter with him, weight be damned. I suspect a part of me was so terrified he might die or something I couldn't handle me or Traci not being with him.

I love you, Tommy...Here's to many, many more years of marveling at where the time has gone.

A Brave New World

Sorry I ripped the title of this post off of a Disney song, but it seemed appropriate. Sorry also for the lack of updates of late. Been dealing with my grampa's funeral and just haven't had the time to write. My Lenten discipline really should be to force myself to sit down and write every night.

Anyway on to the reason for tonight's post. My sweet little happy Matty is entering his terrible twos a solid 5 months too soon. He used to run around all happy and would say yes to everything. Now he loves to say no. Every question you ask him he answers with a no. What's up with that.

I think it was the hair cut. He got his first hair cut a couple weeks ago and he started turning at that point. But this weekend he really picked up the whole no thing. He is such a little brat.

At least big brother is his usual happy self. Tommy is doing so good. We finally got organized and got him into outpatient therapy just to augment the stuff they can do at school, since they never get enough time with him. We finally got a PCA for him so I definitely feel a little better about the whole work situation if I find a permanent job.

Been nice to have a little more work, last week I was out at a place twice loading a rail car full of frozen turkey. Good, hard, work, I wouldn't mind a job like that for awhile maybe I could hustle my chubby ass into a little better shape.  

Settling In

Well the Minnesota experience is off to an interesting start. Still no steady work, but Tommy has gotten into school and we have begun the process of meeting a whole new village of specialists for him. In some ways I feel like God is trying to get us a little more settled before He opens the door for me on the employment front. Which is fine by me in some ways, but a little aggravating too. I would much rather be working.

My poor blog has been neglected, but I am going to try and dedicate myself to writing a little something every night. Especially right now with so much going on. Things like Obama essentially telling the Church to F off, the primary races, life with Tommy and Matty.

Tommy seems to have made the adjustment to his new school quite well. His classmates all seem to like him and miss him when he has been absent. Unfortunately he has been absent a lot so far as he adjusts to new germs and getting into a rotation with this new team of doctors.

Gillette Children's has been amazing so far (1 visit in). We met with a physical medicine and rehab doctor who gave us several prescriptions to get to a local facility for more in home therapy. She also referred us to the sleep doctor at Gillette and just generally had at least an idea for where to go for every time she asked a question and we had a negative answer. I like that.

So we might be able to solve some of Tommy's sleep problems and maybe start getting a full night of sleep. Wow. It seems overwhelming but once we get established and fit into the routine I know we won't be missing so much school with him.

Plus we will have an actual craniofacial team at Gillette, not just Dr. Peterson. Don't misunderstand I love Dr. P and she did amazing work putting a face that was once three parts together, but really a whole team just for this, wow.

Tommy's other big deal is whether we decide to send him to kindergarten next year or keep him in preschool for a third year. Personally I tend to lean toward letting him keep up with his classmates currently in preschool, but Traci and I will have to talk it over and see what we think.

So far both of the boys have adjusted pretty well, and I am thankful for that. We got to see just how well Matty had adjusted to his new life last week when we went to New Mexico for a week. All week he kept looking for his baby and his aunt, so he clearly likes it here.  Had a great time visiting the family and gorging on quality Mexican food.

Speaking of Matty, that kid is going to be smarter than me very soon if he isn't already. He loves being read to and anticipates things in stories he knows well. He understands fairly complex sentences for an 18-month old. 

Mother Nature has been gentle on us this winter only two or three really bad days so far and they weren't too awful. Limited snowfall and reasonable temps I can deal with, even if it will get rough sometime this first winter has been a nice introduction.

I need to apologize for the sparse postings of the last couple months but it has been hectic and I haven't had much time to think let alone write.

I Didn't Want To Be An Advocate...I Just Wanted To Be Dad...

So I am beginning to realize that I will never not be in use as an advocate for Tommy. It's not what I wanted, but it is what he needs. I just wanted to be a daddy, not have to worry about whether the world was fair to him or for him. It turns out I won't get to make that choice.

I never quite understood before all the ways the world stacked against people who weren't in the fat part of the bell curve. Even though I don't think I was in the fat part of the bell curve either, I was at the top end of it, he is not.

It's amazing and a little amusing the things you begin to notice when you have a disabled child. Lack of a sidewalk for a wheelchair, stairs, things I always took for granted that make navigating with him a lot more of a challenge.

You also notice the looks from waiters and hostesses at restaurants as they seat you and you tell them that you don't need a kids menu for him. That one you learn to ignore. Because it takes too much energy to worry about whether or not the kid serving you at Applebee's understands the finer points of a G-Tube; or what the phrase NPO means.

Flying with Tommy has been an interesting adventure into the mind of the TSA as well as stewardesses. They look at his sealed cans of food like they are little bombs and like they need to open them. Fortunately they haven't, or perhaps it is unfortunate; because it means I can't demand the federal government reimburse me for the cost of replacing that food.

The first time I really flexed my advocacy muscles was before Tommy ever came home. He would eat and then reflux his entire meal, causing lots of aggravation for everyone and of course concern for him. Well his doctor had ordered a medicine for him that didn't help and in fact made a bad situation worse. In my youthful exuberance I politely informed the doctor that next time someone gave Tommy that medicine I was going to punch him in the face.

Fortunately I wasn't arrested; Tommy was taken off the medicine (Zantac, if I remember correctly) and we were all the happier for it.

I guess I should have realized then that it was only just beginning. I am a dad, but I am also his voice in this world and I have slowly come to accept that the latter means more, because it is the bigger job.

Tough To Swallow

Today was an interesting day here at the Musing's Mansion. After a bunch of discussion on the benefits and many false starts at getting one done, Tommy finally had a rehab swallow study.

To catch you up, if you need it, basically because of his craniofacial issues Tommy's ability/ease of swallowing things in his mouth has long been questioned and worried over. He had been working at school with his speech therapist getting small tastes of certain foods (yogurt, pudding, things of that consistency).

Daddy was left out of the actual exam, because I had to stay in the waiting room with Matty, but it wasn't to long before I got to go back and watch the video of the x-ray as he was fed. After a couple of nice successful swallows, there it was: one very bad, swallow that gulped the barium laced pudding down into his wind pipe.

Tommy had aspirated. He didn't even try to clear his windpipe or cough as the stuff went down. That is not good. So he officially has an uncoordinated/unsafe swallow. All is not lost to be sure. While the result was a disappointment, it isn't the end, it doesn't mean he can never eat it just means we need to back it off and work a little slower and perhaps train his swallow.

Perhaps the bad news is that the little goon is a silent aspirator. That might not be the best thing. But knowing he does aspirate perhaps alot of the times he has been "sick" have been aspiration related and not a real sickness.

It's another piece of the Tommy puzzle in place, another part of the present unwrapped, but I am not sure I liked the gift. So now we go back to square one and we work in little tiny tastes that he won't have to swallow and we build from there.

Meanwhile this evening Matty mowed down Cheerios like they were going out of style, ate a jar and a half of baby food, had a cookie, and his first piece of cooked pasta. It comes so easy for the little booger and Tommy has to work so hard at everything. Sometimes I wonder if big brother gets a little jealous of everything little brother can do already. I wonder if Tommy even understands jealousy.

I have to think he does. The other night his old care attendant came by with her daughter and baby daddy. Now, before the baby daddy, his care attendant was all his. Well he got us to give him to her and he climbed in her lap and stared her baby daddy down like "Whatchu gonna do about it...?" It was so cute, he knew exactly who to look at with a big old turd-eatin' grin plastered on his face like he was saying "Haha I showed you."


So the Church has patron saints for everything right, well, St. Blaise is the closest I can find for Tommy's issue. Anyone else got another...??

Saint Blaise, pray for us that we may not suffer from illnesses of the throat and pray that all who are suffering be healed by God's love. Amen.

An Open Letter to My Sons

It's a big world out there boys, first take care of each other, the hell with the rest of it.

One day you may be all the other one has. Love each other, support each other and when you can lend a hand to help someone else up too. Help the ones who can't help themselves.

I want to personally apologize to both of you for the fact that you are inheriting a world, a country, that is lost. This country, especially, was set apart to be something different and now it teeters slowly toward its own destruction. With a little luck it might be getting better by the time you inherit it, but I doubt it.

Having siblings gives you both an advantage. Siblings are amazing things, someday everyone you know may leave you behind, if that happens call your brother. Someday you might even have sisters, I will try my best to help you understand how to deal with them. But I may well be out of my depth as I still struggle sometimes trying to figure out how to get along with my own. The best part about having a sibling, though is that you might be ready to pound on them, you are so angry. Until someone else comes along and says something about them. Then you pound that guy.

This is a flawed, fallen, world increasingly giving into a me-first, anything goes lifestyle. Don't buy into that, look for examples all around you of the right kind of man to be. Hopefully by the time you two can understand this I will be that kind of example. If not live life the way Jesus did. Read Philippians 2. Take it to heart, live it.  Be lights in the dark for the people around you.

Always see all of the wonder in creation. From the little bugs to the biggest whales. From the deepest oceans to galaxies far, far away. Learn something new everyday. Always ask why. If you don't know why, find out. 

Don't ever be ashamed of who you are or where you come from. Have regard for your name, since it will remain for you larger than a thousand great stores of gold. The days of a good life are numbered, but a good name endures forever. (Sirach 41:12-13).

Which reminds me, read your Bible. More importantly live the Bible.

I do my best to remember everyday to tell you each how much I love you. If I forget sometimes, don't think I don't love you. Someday I am going to embarrass you. I probably won't mean to, but I will. Love me anyway.

Love your mother. She has done and continues to do a lot for all of us and sacrificed for all of us. Be kind to everyone, even people you don't think deserve it, you don't know what brought them to that point in their lives.

Take care of yourselves. Take care of each other and know how loved you are. Know that wherever you go and whatever you do in this life, I will be right here ready to catch you when you fall. That's my job.

The Power of a Song.....

Sometimes the first time you hear a song it touches you in such a deep way you can't help but feel. The song sort of tells you how to feel, sometimes sad, sometimes happy, sometimes somewhere in between. A song that really hit me awhile back is called "She's With Me," by Collin Raye.

The song is about his Granddaughter, who died from a rare brain disease. The first time I heard it was a time when Tommy was having a rough night sleeping so I had gotten up with him and we were watching music videos on GAC. On Sunday mornings they have a couple hour block of Christian/Country videos. Music usually soothes Tommy so we were watching trying to stay cool and calm. That's when the video for that song came on, Traci had joined Tommy and I as we were sitting in the living room and by the middle of the video she and I had tears running down our faces.

The song talks about a lot of the things special needs parents face. Finding tables at a restaurant, having to leave the mall earlier than you might want because your child is just done. Things that seem so easy to do for parents without special needs kiddos become very difficult for you because of your little one's needs.

"I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light."

It was right about this part of the song when I just lost it. I looked up to heaven and said: "Ok God, I get it." I so know the way it feels to look in the mirror and think how could I be the one to be so blessed to take care of Tommy. When I listen to this song, my brain just sort of auto corrects all of the references to a little girl, to little boy.

I often wonder about the Ineffable Plan God has. I know I am so imperfect and that Tommy is so perfect I can't help but screw something up.   

God I know you won't give us any more than we can handle, but sometimes I wonder why you trust me so much. I love that, Mother Teresa of Calcutta said that. I can relate and I have nowhere near her heroic virtue.

Questions Answered

Holoprosencephaly...Say that three times fast, I'll wait for you to give it a try. I'd never heard that one before, I used to read the dictionary for fun, but this was a new one on me. Tommy was without a diagnosis for nearly a year and a half before he finally had an MRI. The MRI finally showed us the root cause of Tommy's issues.

Holoprosencephaly....What it means is that when he was still a fetus, Tommy's brain didn't do the things it was supposed to do. His brain didn't separate as it formed into two distinct hemispheres and didn't produce much of a corpus callosum.

So his brain is without the piece which aids in the left/right communication of brain activity. Not to mention as I said he doesn't have separate hemispheres.

Before we had this diagnosis we chased down several rabbit trails of other ideas, none of which bore fruit. They only served to pull us away from where we should have been looking. If I sound a little bitter about this I suppose I am. A CAT scan of Tommy's brain showed some abnormalities to the neonatalogists, but they didn't pursue them. His geneticist proposed a syndrome she thought would fit and we loped along the trail chasing those down. The blood results proved that wrong.

I guess my frustration comes from the fact that we didn't get into see a neurologist for 18 months because no one thought Tommy's brain abnormalities were worth referring.

When I get aggravated about it, I try and step back and pray. Just letting God remind me that He has known all along what we need to know and when. It seems very much like God is unfolding the many mysteries of Tommy slowly as we can accept and deal with them. This is at once a comforting and terrifying thought. Comforting for obvious reasons.

Terrifying because I think of the fact that we didn't know about two various aspects of Tommy's situation, either one of which could have been the death of him, until he was 13 months old. That's when we found out Tommy has two separate endocrinological issues, either of which, if untreated could be fatal. Yet we had carried on blissfully unaware and he had been kept perfectly safe.

I truly know as I have said many times before Tommy has a very special purpose here on earth. I don't know what it is exactly, but his survival shows he has something to do.

Every time I look at him I think to myself, he shouldn't even be here. Most babies conceived with this problem are miscarried or stillborn.

"The condition can be mild or severe. According to the National Institute of Neurological Disorders and Stroke (NINDS), "in most cases of holoprosencephaly, the malformations are so severe that babies die before birth.
When the embryo's forebrain does not divide to form bilateral cerebral hemispheres (the left and right halves of the brain), it causes defects in the development of the face and in brain structure and function."
 Wikipedia

So many things seem to have conspired against Tommy and yet he soldiers on. He just daily accepts his trials and keeps such a happy disposition. It is hard to be unhappy with Tommy around.

I remember one night after Tommy was born, while he was still in the hospital I was praying my rosary, the mysteries of the day were the sorrowful mysteries. While reflecting on Jesus carrying his cross, I realized God was telling me that this was Tommy's cross to bear and just like Jesus had help carrying His cross, so should I help Tommy with his.

When the Hand of God comes down on Tommy and gives him his miracle, I hope he doesn't lose his personality to his new brain...Lord I would rather he stay this way, than be healed and be a surly, grouchy kid.

Happy Lent everyone. I hope you all have a glorious season of repentance....

Jesus...Miracles...and...Tommy

I've been thinking a lot lately about miracles and how they pertain to Tommy. Recently the Lord has opened my eyes to a particular passage, one I had heard countless times and never applied to Tommy's situation. John 9: 2-5 tells the story of the man born blind. Jesus' disciples ask him whose sin caused his blindness, the man's or his parents. Jesus, of course, tells them it happened so that people might see the glory of God.

As I said I have heard this scripture many times before but never attempted to view it concerning Tommy.

While in the fog of trying to accept and adjust to the reality of Tommy, I sometimes felt as if my in-laws thought Tommy wasn't acceptable or good enough without a miraculous healing. I know they didn't feel that way, but almost immediately they started praying for and talking about how he was going to have a miracle. I'm all for miracles and as a card-carrying Catholic, fully believe in many from the Dancing Sun at Fatima; to the waters of Lourdes; to Padre Pio's many miraculous doings.  Not to mention the one I most often referenced to assure people I believed in miracles, transubstantiation of bread and wine into the Body, Blood, Soul and Divinity of Christ.

But in that fog I couldn't quite voice my feeling that perhaps God had a greater purpose in Tommy's having been born the way he was. I felt like my in-laws and I were talking past each other and my tongue kept betraying my argument in its inability to voice accurately what I felt in my head and heart.

I realize that in the very story I mentioned Jesus cures the blind man via a miracle, so perhaps it doesn't best describe how I felt then, but I think it does. I also heard that I was limiting God, which aggravated me because God created everything "Seen and unseen," so how was me saying maybe he doesn't want to heal Tommy limiting him. He called a universe into being merely by thinking it. He has no limits, again it was as if my tongue couldn't articulate the argument I had, which I felt and still feel was theologically sound. Which is to say my argument was at the time, if God chooses to heal him I am just fine and dandy with that, but if he doesn't I am ok with that too.

In the last several months as I get Tommy ready for bed it has become part of our ritual to say a handful of prayers: the Our Father, Hail Mary and Glory Be start us off. We follow those with prayers to St. Michael, Tommy's guardian angels, and our big finish is a prayer to Our Lady of Lourdes and one to St. Rita.

If you don't know St. Rita, she is the patroness of the impossible. Tommy and I ask her to pray for Tommy's miracle as fervently as she can. Sometimes I even include a prayer to John Paul the Great, since I figure he probably understood a lot of what Tommy goes through, being trapped inside your own body.

In Hebrews 11:1 we are told that "Faith is the realization of what is hoped for and evidence of things not seen." I believe Tommy has that faith. I know I do. I believe God can heal Tommy, I just wonder if it is to His purposes to do so. In my own prayers at night I routinely ask God to see Tommy even if just once, even if it's only a dream, through His perfect eyes.

During a trip to our local healing room, one of the guys had a bit of a vision or prophecy for me. He told me that he saw Tommy as my ministry in a way that he could see me talking to a room full of folks and saying you think your kids are hard cases let me tell you about mine. I often wonder if that was God's way of saying "be ready when I do my work so you can carry the message." Or is it the other way, insofar as Tommy's story is a story of survival all it's own with or without miraculous trappings.

Knowing the odds Tommy has already overcome and that he continues to overcome, make me so proud of him. Sometimes I see Matty moving and doing things so effortlessly that his big brother still struggles with after three and a half years and I almost get mad at him. Sometimes I look at Tommy and wonder what I ever did to deserve him, because I am unworthy. I know that God has entrusted Traci and I with one of the best pieces of his work and I have yet to understand why. I just pray for the strength to be what he needs me to be. And I pray for the understanding of what God needs me to be, for my family. 

Over the winter we prayed at Mass for a local nun to be healed. There was a note from her convent in the bulletin this weekend, saying she didn't get the miracle healing. The nuns noted sometimes when we pray we don't get the miracle we want, but we always get the miracle we need.

That's the thing we don't always understand, God but he knows better than we do. Hard knowledge to swallow sometimes. Almost as hard, if not harder, is that just because we get told "No" doesn't mean God didn't answer our prayer.

Doctors, Doctors and More Doctors

From the first day of Tommy's life it seems as if we have had an endless stream of doctors. It seems like every new doctor we meet tells us how we should see one specialist or another. Traci and I refer to this vast network of doctor's as Tommy's village.

The first specialist who came into our lives has always held a sort of primacy of place for us. If for no other reason than she was the first who looked at Tommy and said "I can fix that, for ya," while that isn't a direct quote it might as well have been.

I was sitting with Tommy in the Neonatal ICU in Spokane, when we first met Dr. P. I had been told she would likely come by to consult either that afternoon or in the morning. Remember it was me and Tommy against the world at this point still, his momma was still stuck down in Moscow and our assorted families were all en route.

I remember sitting alone in that quiet space clutching my rosary, looking at my firstborn, wondering what had happened, how it could be fixed, why it had happened. Dr. P came in and introduced herself, took a look at Tommy and started telling me exactly how we could fix the cleft and what sort of time frame we were looking at for the various surgeries. I remember thinking, "She can fix him, and make his face whole, how awesome is she".

I'm pretty sure I even called Traci using a few precious seconds of my cell phones rapidly dwindling battery and told her, "I met the plastic surgeon and she doesn't care about the other stuff going on. She says she can fix Tommy's face."

Over time and several surgeries, she has done just that. Tommy has one upper lip and palate, where he used to have three. We have heard lots of people tell us lots of things about Dr. P, but never has a single one of them been bad. She is an amazing lady who frequently takes trips to developing countries and does cleft repairs for the poor in those nations.

Traci and I often say that God probably had to make Tommy the way he did, because had he been born without the cleft and with his other parts being like they should, he would be too beautiful to look at. Plus it has given us a window into so many things. Dr. P's deft touch as she has repaired his upper lip, his nose and his palate has been amazing.

I almost wrote noses in that last paragraph. One thing we found out after one of Tommy's surgeries is that his body tried to make two noses. It was beneficial for Dr. P as she was able to use them to her advantage in that surgery.

When I look at old pictures of Tommy and see that wide cleft smile, sometimes I get a little sad. Sometimes I miss it. I know everyone looks at their babies and waits to see how they change over their first year or two. Traci and I got to see ours change over a few hours. We would get to the hospital for surgery and get everything squared away, sending our little man off into the capable hands of the hospital staff, then we would go eat breakfast and wait. After a few hours we could go see him in recovery, the first time we got to see him with a whole upper lip was amazing. Every surgery since has had a sort of "let's look at the new Tommy, feel to it". 

If you have the means or the inclination or are looking for a tax write-off. Give Operation Smile a look. They do amazing things.

I Wasn't Ready for That.....

This post deals with all the things that have happened in the three and a half years since I posted this:

The first part of the story is here

Little did I know that a week or so after that initial post I wasn't worried whether or not Tommy grew up a 49er fan. Reality crashed down on Traci and I hard after that. Tommy was born with Holoprosencephaly and owing to that he was born with a cleft lip and palate and deformities of his hands, feet and ears.

When the doc hands you your son and tells you there are problems before letting you hold your firstborn child, your whole world stops and shrinks to about the size of a half-filled balloon. Traci and I each hurried questions at our doctor, what problems, what do you mean, what, why, how.

It feels like getting punched in the face by Muhammad Ali. Everything catches in your throat. Your breath and your stomach meet around your Adam's apple. Then you start looking, looking for anything you recognize as part of yourself or your spouse.

Then the guilt comes. Did I/we do something to cause this? What did we do wrong?  

Tommy's face was the first one I had ever seen with an open cleft. Kid looked like he had lost a fight with Wolverine.  After my eyes adjusted to the reality of his face, I saw how beautiful he was. Tommy and I soon took to walking the halls of the family birth center while the doctor and nurses tended to Traci's follow-up checks. Mostly because I had to get out of that room.

Traci and I talk about it now: It's like Tommy died in that room. He didn't but the real Tommy wasn't our idealized Tommy either. In fact when the nurses asked us for his name I couldn't say it. I just kept thinking this isn't my Tommy.

The rest of that day is a blur as are the five weeks he was in Spokane at Sacred Heart. I do remember that first day after he and I got there on the helicopter and he was situated being sent down to the cafe with a meal ticket and zero cash. The meal ticket didn't cover my selection and I just started tearing up. The lady at the register just said don't worry about it and sent me along my way.

I remember trying to eat, being overwhelmed with grief and being so lonely. I had been taken an hour and a half from my wife with our child; my parents were en route to us but still probably in New Mexico. Her mom was supposed to come the next day. I was alone. I used the last little bit of life in my cell to call Traci and check on her.

I was so happy to see her when she finally got released from the hospital and was driven up to Spokane. I was whole again, battered but whole. We went to see Tommy sleeping peacefully in the NICU. We went back to the Ronald McDonald rooms at SHMC and tried to rest. My parents got in late that night/early the next morning and I got them situated at the hotel and took them to see Tommy, before I attempted to sleep on the hard floor of the room.

As I said the next five weeks were a blur of rounding doctors and tests and our little man's first surgery. I know August happened in 2007, but I don't remember much of it.

As for everyone in our community the outpouring of love and support they gave us was like a life raft in a raging sea. I know we will always hold Moscow special in our hearts regardless of where we end up.

So that covers the early days of Tommy, but now not only do we have Tommy but he has a little brother. He and Matty are co-presidents of the mutual admiration society.

"As The Young Man Held The Warm,
and Sleeping Bundle To His Chest,
he Saw The Imperfections,
and Although He Tried His Best,
he Couldn't Stop The Tears From Falling,
as He Held His Little [boy]
and In A Low And Trembling Voice,
he Gently Said These Words;

you're Beautiful In Every Way, So Beautiful.
how I've Waited For This Day.
if The World Was Offered To Me,I Just Couldn't Make The Trade.
cause You're Beautiful."

Bob Carlisle  

Am I Really Ready for this?

So here we are three short days from D-Day. While I am super excited to have a son, someone to carry the Morris and Jacobson lines further into history, I gotta admit I am terrified as well. I can barely take care of the wife and myself, how on Earth will I take care of Tommy as well. Everyone says I will be a good father, but can anyone really know. Certainly I had a great example, but how will I apply those lessons to shaping this little life. Tommy will spend his first several years thinking his dad -and mom hopefully- are some sort of superhuman beings, lofty expectations, no.

Every time I think of my son I think of all these great and wonderful things I hope he will accomplish, but the flip side... I guess Robin Williams said it best in his Night at the Met album/stand up special. "You have this dream of him standing at a podium and saying I would like to thank the Nobel Academy, but you have another dream where he is saying 'do you want fries with that.'"

On a completely impractical and totally useless tangent, how on earth do I help Tommy pick out the proper teams to root for. I mean as a 49er fan from the days of Montana-Rice to the days of Smith-Gore, how do I teach Tommy to root for the scarlet and gold and not fall into his mother's sway and become a Vikings fan. On a more frightening note what if he fails to listen to any good logic from either side of the family and becomes a Seahawks fan or something. And that's just pro football I don't know what I will do if the kid doesn't like Notre Dame. I would probably tolerate a little sports bigamy in terms of collegiate athletics because let's face I root for no less than three NCAA teams actively.

Here's hoping if nothing else Tommy has his dad's sense of excited participation in sports, may he not suffer from his father's lackluster participation, however.


Ultimately I guess I really just hope Tommy and I have a relationship resembling the one I have with my dad. We have always been best buds, really, hunting partners, video game opponents, friends. I am sure every expectant father suffers from the same can I do this sort of fears I am feeling right now, it is just absolutely terrifying to think that any day now, I will literally have a mouth to feed and a human being to care for that is totally dependent on his mother and I.

The beautiful wife I don't worry about she was born to be a mother and besides Lord knows in the 22 months of our wedded bliss I have given her lots of practice.


Every time I put my hand on my wife's belly and feel my little bruiser kicking and bouncing up a storm in there I feel simultaneously overjoyed and scared, but I gotta admit it is one of the best feelings I have ever had in my life.

Here's to you Thomas Christopher. Feel free to come out and enjoy the world now, big boy.