Kids Update

A few of you long-time readers may be wondering how Nathan and Carissa have been doing during my long absence from blogging.

Nathan is doing great! He's coming up on twelve this summer (and I'm trying to practice admitting I have a twelve year old!), and 6th grade has been his best so far. He attends a great school with two of the best teachers on earth, and loves participating in adapted sports such as volleyball, bowling and basketball. He has been quite healthy and his CMS is in a very stable phase. He constantly entertains us all with his sense of humor and has really been working on making sounds and vocalizing recently.

Carissa is a wonder. She has finally finished potty-training and is smarter than her Daddy and I combined, although we are fighting hard to keep her from figuring that out yet! I must admit that I loooove having a three-year old-I never know what she will say next, and her observations on life force me to look at things through brand new eyes. She has become Mommy's buddy lately, and loves helping with any type of housework or chore (which I'm sure she will completely outgrow long before the teen years start!) She has a cadre of about six imaginary friends that she "leads/bosses" all around the house, and is convinced that all girls are princesses.

So Sorry, SeaWorld!

I owe Sea World an apology. In 2004, during our Make-A-Wish trip, we spent a morning there, and it was just not on par with Disney for their disability support. We experienced a long, frustrating time, fighting crowds and long lines with a wheelchair and seeing staff just shrug their shoulders over and over because there was no policy or training in place for them to know how to help us to help Nathan experience things. (As a special-needs mom, I must give a shout out to Disney because I have never seen a staff more well-trained about how to help families navigate their park and experiences!!) After that, I swore I would never go back.

Well, I am eating those words as I sit here typing. After weighing the pros and cons of Sea World vs. Universal with a toddler, Sea World won. And we had a great day! The temps here were 96 with a heat index over 105, but SW seemed much cooler than Epcot because of all the shade trees over the walkways. We fed the dolphins again, which was the highlight of our last trip, but we found so much more to do. The shark tank was amazing and the sea lions were hilarious! Carissa thoroughly enjoyed the Elmo Rocks show-she (and we!) got to see all of our beloved Sesame Street characters, from Cookie Monster to Bert & Ernie.

I humbly apologize to you, Sea World! Thanks for the great day!

Holland v. Italy

The ladies over at girltalk have continued their series on special moms with special needs kids, introducing us to another amazingly courageous mother, Irene. In their third post in this series (on June 14) they shared a mind-blowing, biblically-sound article entitled, "Then shall the lame leap like a deer; God and the disabled," written by Peter Avery, who is the dad of a child with special needs. They received special permission to link to it, so hop on over to their blog and click on their link to read it. It is the best biblical argument regarding why God allows disabilities that I have ever read. In fact, I printed out a copy to give to the next well-meaning, overly-spiritual person who implies to us that something is wrong because Nathan has not been healed yet!

A friend of mine who has a brother with disabilities commented on my first post regarding mothers with special needs kids by saying, "I have spent many nights as a teenager crying myself to sleep because I was mourning that my little brother would would not be able to have the life I had dreamed of for him." She hit on a fundamental issue of having a loved one who is disabled-mourning the loss of their opportunity for a normal life. When Nathan was born, we were so caught up in believing that God would heal him any day and trying to learn to take care of him, that it was months before this period of mourning set in in my life. No one explained to me for a long time that when you expect and plan for a healthy baby, and your baby is born with disabilities, you mourn the loss of the healthy baby you anticipated and planned for, just as if you had lost a child to death. A wonderful nurse who cared for Nathan right after he was born sent me a card, and in it she included an essay that changed my life and allowed me to finally stop and mourn my loss, so that I could move on to healing. It is entitled, "Welcome to Holland," and was written by Emily Perl Kingsly. It reads:

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

I still cry every time I read this, because it so perfectly describes the emotions of having a child with disabilites. During our eleven years I have indeed learned to love the tulips, windmills and Rembrants of Holland. And I have now been blessed to live in both "Holland" and "Italy," since the birth of our healthy daughter, Carissa. I have finally been able to experience for myself that both destinations have their pluses and minuses. But I wouldn't trade my time in either place for anything in the world!

Special Needs Moms

My good friend Julie kindly directed my attention to an article about mothers of special needs children on a great blog called "girltalk." I have read this fantastic blog before, but when I clicked on the link and began to read this article I found myself crying. I have never heard another woman's account of motherhood that sounds so similar to my own.

I rarely talk about the emotional side of what it is like to have a child with severe disabilities. In fact, the blogging I have done here in MomMusings is the only mention I have made of it, other than talking with Chris-which is one of the main reasons for my blog. I had a discussion with a friend over coffee recently in which we talked about dealing with Nathan's disabilities, and she said, "Well, no one really would know because you guys never really talk about it. You never share with others how difficult it must be!" I find it hard to articulate for two reasons: 1.) I would never want to come across as whining, because having Nathan be my son is one of the highest privileges of my life. He is (in my opinion!) the most amazing boy on the face of planet earth, and I marvel that I get to know him and spend time with him every day!! And 2.) as a good Southern girl, you try to "make nice" all the time. Talking about having a son who is profoundly handicapped, and how that impacts you emotionally is usually a real conversation stopper! It makes others uncomfortable that you hurt and they can't do anything for you, and it just seems to lead to an awkward silence.

But I cannot thank the ladies over at "girltalk" enough for allowing one mother to share her story, so that we all can live vicariously through her! Thank you, Diane, for being so transparent about such private pain and struggle. I can't wait to read the next article in the series!!

My Champion

Today was Challenge Day for Special Olympics at Nathan's school. He competed along with his classmates in the Beach Volleyball event! I was so proud of him. They had adapted a huge slingshot to launch the volleyball over the net so that each student could "serve." Nathan served twice and returned the volley back over the net several times.

I am always so overhelmed by the community support for our Special Olympics day. To see the outpouring of support and the look of pride on the kids' faces brings me to tears every year. Of course, I have to hide those tears, because nothing embarrases a ten-year old boy more than a weepy mother!

I'm tremendously proud of my guy, but in a way I'm proud of us too. It is mindblowing to realize that a child like Nathan, on full life-support can even go to school every day, much less participate in an event like this. So, just this once, I want to say,
"YEAH!!!!, McMILLAN FAMILY!!"

When Will The Week End?

This has been just a yucky week! Nathan had surgery on Monday, which went well and he is recuperating quickly. That's the good news! I came down with a horrible head cold the day after his surgery. So I have been unable to go to the hospital any day this week to be with Nathan. I usually handle all of his acute medical care information, so poor Chris has had to call me a million times each day with another question from the medical team. It seems that the mindset of the team in a Pediatric Intensive Care Unit (PICU) is, "If it's working well, let's tinker with it and see if we can get it to work better. That made it worse? Oh, well!" Anyhoo-it is killing me to not see Nathan for three days or be there for him when he needs me! I feel like the worst parent in the world!

Meanwhile, two of our staff members had new babies last week, and as the Women's Ministries Coordinator it falls to me to arrange for some meals to be brought for the new moms. I made phone calls and put together a schedule of the women who agreed to prepare a meal and gave it out on Sunday, so that everything would be in place before heading into Nathan's surgery on Monday. Almost every single woman on that schedule had to move their night, or something came up and they couldn't do it. To quote Charlie Brown, "AAARRRGGGHH!"

On top of all of this, I completely forgot our weekly Women's prayer group this morning. I suspected a ball would get dropped soon, but I hate that this was it. I hope the women will be understanding.

Chris and I were talking on the way home from the hospital about how no one outside of the two of us really understands all that the last ten years has held for us. I am amazed that even after ten years of being in the hospital and numerous surgeries, it is the hardest thing in the world to leave your baby in the hands of others and wait for the outcome. It is not just hard; I find it to be agony. I don't think I've ever told anyone this besides Chris. Everyone else just takes it for granted that we handle all of this so well, and I am grateful for the testimony that brings to God, but it never gets easy or routine.

At the hospital we used to frequent they made you tell your child goodbye in the hallway and they wheeled him away from you while he was still awake. At least here they let one of us go into the operating room with him until he goes to sleep. But I still have to force my feet to walk out of that room. And then the waiting is excruciating to me, who is used to being at least well informed of his status every moment of the day, if not outright responsible for his status! It is definately one of those times when I literally leave him in the Lord's hands!

I don't know how I could parent if I didn't have faith in a God who is bigger than this life. There are so many uncertainties and things we cannot control, especially with a special-needs child. When I feel like I'm about to come unglued I have to remind myself that I am never in control anyway, that even when things seem well in control, the control lies in God's hands. And I can't think of a better place for it to be!

My Mommy Anniversary

My precious boy turned ten years old today! It feels like yesterday that he came to us, and yet when I think back over all that we have gone through and how much we have grown it feels like forever. I often joke that I define our life together as "BN" and "AN" (Before Nathan and After Nathan); I have trouble even remembering events from before he came to us or what I was like then.

I have celebrated my amazing boy's accomplishments all day today, but I would like to take a moment and reflect on what these ten years have meant to a mother. In a sense this is not just Nathan's birthday, its the anniversary of when I became a mom!

I can't help but remember that day ten years ago when I was up and walking for the first time after the c-section. I walked with my Dad down to the NICU, and the nurse met us at the door of Nathan's cubicle with a knowing smile. When she asked, "How would you like to hold him today?", I was hit with a powerful surge of both longing and bald fear at the same time. I went in and sat down while she arranged all of the then-strange-but-now-second-nature tubes and wires. Then she put those seven pounds of little baby boy into my arms, the arms that had longed for a child through months of dashed hopes and desperate prayers, through a pregnancy frought with sickness when the only light of hope was the promise of full arms, through the last two days when we had been seperated by two different hospitals and the gulf of fear and uncertainty we had all been set adrift in. Despite the narcotics keeping him from having the seizures they said he would always have (and never has!) I watched him snuggle into those arms, my arms, and in that moment everything melted away. I knew in that moment that no matter what happened from that point on I would never be the same. It was at least half an hour before I realized that both Daddy and the nurse had slipped away to give us some privacy. In the background the radio they left playing in the unit all the time started playing Celine Dion's "The Way You Love Me." I still think of it as 'our' song and dissolve into tears whenever I hear it. I fantasize about what it would be like to dance with Nathan to it at his wedding, him tall and handsome in a tux and me a puddle at his side.

That is the most happy memory I have of Nathan coming into our lives. Most people say that the happiest day of their life is the day their children were born, but with Nathan we just couldn't say that. It was an earthquake day; a day full of shock and pain, fear and questions. But each day we-all three of us-just survived;that was a miracle in itself. And each day it got a little better until one day four months later we brought him home for the first time.

In the ten years since then there have been wonderful times and there have been dark ones. We've come about as close as you can to losing him about five times; but God, in His infinite grace, has let us keep him a little while longer each time. And wrapped around those brief and terrifying times have been sublime heaven. The way he smiles at me like no one else. The sound of his laughter when it's just the two of us talking and I make a dumb joke. The joy he shows at seeing any of his grandparents. His pride at riding the bus to kindergarten like a big boy(and how hard it was for me to let him do it!). Watching him give his heart to Jesus. The days run together and next thing I know he's ten years old. He's going into the fifth grade, and he gets mad when there's a snow day that cancels school because he loves it so much. He's the best big brother I have ever seen. He cries when his heart is moved during worship at church. He is truly my hero, the strongest and yet most gentle person I will ever know. Even though it is my highest privilege that I know him better than anyone else, I will never fully know what he has had to endure. I have only seen him angry a handful of times, and somehow he still keeps that loving and open spirit that could so easily be bitter and hopeless.

I have often questioned how God picked someone as frail and weak as myself to be Nathan's mom, but I thank Him continually that he did. In sharing the testimony of all that God has done for us in Nathan's life I often quote a scripture from the book of Job where Job says of God, "Before, my ears had heard of You, but now my eyes have seen you." I have known about God since I was three years old, but I can truely say that now I know Him. He has been there through these ten long years and I know He will continue to be there throughout whatever Nathan's future holds.