Monday, July 31, 2006

Get Out Your Needles because Life is Not Fair

From the pen of Laura. Written in May 2006.

I still have the knit cap my daughter wore her first couple days of life in the hospital. I keep it because of the memories it conjures up of new beginnings.

My son, however, never had the chance to need one of those little caps as he was whisked away by the doctors immediately upon his entry into this world. We knew Ira was going to have to fight for his life. At our 19 week sonogram the sonographer discovered a hole in his diaphragm. He was diagnosed with a Congenital Diaphragmatic Hernia. Ira's hernia was so severe that his liver, stomach, and some intestines were up in his chest crowding out his lungs. His lungs had no room to develop and so were not able to sustain him after his birth. He was put on a succession of ventilators none of which were able to give him enough support. On his second day of life, as a last resort, he was put on a heart-lung machine called ECMO. All of his blood was systematically drained from his body and oxygenated by this machine. The technology and the skill required of the doctors to sustain him were incomprehensible.

Even with all the technology and skill, Ira spent 10 of his first 12 months in the hospital. Although Ira is alive, there are many things I've mourned over the course of the last year. I mourned the fact that he was never able to nurse. I mourned never carrying him around in a sling, snuggled close to my body. I mourned for my three-year-old daughter who wanted her baby brother home so she could play with him and show him her toys. I mourned the chance to show him off to anyone and everyone, as every mother loves to do. So many times I looked around in self-pity and thought life is not fair.

And there are things I continue to mourn today. I mourn for my family because we cannot go places all together due to Ira's fragility. I mourn that he cannot make noise when he cries because of his tracheotomoy. I mourn that he is one and still cannot sit up on his own. Again the thought life is not fair.

I want to scream, life is not fair when I see families headed off to the beach or to the baseball game. When I hear of families taking vacations or road trips together, the words ring in my ear.

The other day my husband was going to take our daughter to the park and to get ice cream. Sophia looked up at me and asked if I could go too. I calmly explained that someone had to stay at home with her brother but in my head I was whining about the unfairness of it all.

Recently, though, the phrase life is not fair has taken on a whole new meaning for me. I came across an article describing the plight of babies across the ocean and was beside myself. I learned that hundreds of thousands of babies are dying due to lack of sterile blades and cheap vaccines. They are dying because the knit cap we take for granted here in the U.S. to keep babies warm is an anomaly in some countries. Babies are dying from diarrhea and pneumonia -- sicknesses that could be easily remedied or avoided with simple vaccinations and tetanus shots. All of a sudden my exclamation of self-pity was turned into a proclamation of injustice. Life is not fair!

When I think about the time, expense, and skill required to keep my son alive there seems to be a complete disconnect between these two real-life situations. How can so much be afforded my son while another's child is lost so unjustifiably? How can one baby be granted hundreds of thousands of dollars worth of care while another life is denied a 15 cent measles shot?

This winter as I sat by my son's side in the PICU a close friend taught me how to knit. The hope was I would have something to occupy my mind as we waited for Ira to heal. This year my new skill will be put to use. I plan to join with thousands of fellow knitters around the country in Caps to the Capital - an initiative aiming to remind America's leaders that simple solutions can save millions of lives. I will knit baby caps and send them to Washington.

As a mother of a chronically ill child, I am daily faced with the reality that my son could die sooner rather than later. And as much as I try to live positively with that reality, there is nothing easy about the thought of losing him. The death of a child, regardless of whether the time spent on earth is measured in days or years, in this country or across the sea, is a loss from which one can never fully recover.

Today, as I hold my son and rock him to sleep, I will be thankful for the fact that he is alive. Although his life will continue to be supported by a machine I will be thankful for the heart that still beats and the lungs that are trying to grow. When I am tempted to think that life is not fair, I will remember that it most definitely is not.


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8 Comments:

Blogger Cathy said...

That was absolutely beautiful.
I wish I could knit, But I will use my skills in other ways.

My prayers continue for Ira.

Peace. xo

7:59 PM  
Blogger julie said...

Laura, my daughter and I have been knitting since Christmas. We could help knit hats. I have only knitted scarves and crocheted a blanket. I will have to try the baby hat pattern that I have. My daughter is in the middle of knitting a purse. I think we can handle a baby hat...just give us some time and we will have it figured out. Great idea.
Clay, I think dudes can knit anything they want. I love it when we use our gifts...especially when they aren't the gifts that society expects us to have. Go for it, Clay.

11:38 PM  
Blogger Glo said...

Peace, Laura.
Peace, Joe.
Peace, Sophia.
Peace, Ira.

My prayer is that the Holy Spirit will wrap each of you up in his loving arms and give you peace.

Thinking of each of you fills my heart with love and joy...even when I'm thinking that life isn't fair. Months ago, I prayed fervently that Ira would live long enough that he would know how much he is loved. And God answered that prayer because Ira is soooooo loved by so many!!!!

So now my prayer is that Ira gets better. Maybe that's selfish on my part because I've seen that precious smile and gazed into his trusting eyes. I can't imagine not having Ira in our lives. I'll continue to pray for and cry for Ira....and you, Laura....and you, Joe...and you, Sophia. I just don't know what tomorrow will bring. But I will do my best to rejoice in the day that the Lord has made.

That won't be too hard to do later this morning because Joey is with us and is delightfully happy to be spoiled by his "new" grandparents. I pray that we'll get to spoil Ira in the same way some day. Oh, how I pray that prayer every day! God, please.

And while waiting for the answer to that prayer, Laura, I will learn to knit caps for babies who need warmth. I am also thinking that they might need some quilts and blankets. Thank you for helping me think about other babies and their needs.

I love you guys so much.
Mom/Gram/Glo

2:51 AM  
Blogger Vicki said...

You should write more often, Laura. Or have your own blog. You're kind of like EFHutton. When you speak, everyone listens.

My 14 year old daughter makes babies caps, too.

10:50 AM  
Blogger TheGlissonFamily said...

Laura,
I looked up to you in high school and I still think of you as a role model today. Thank you for sharing such a touching story. I've been following Ira's progress for some time now, but am just now getting around to commenting. You and Joe have been through so much and I thank you for your Christian example. Our family continues to keep yours in our prayers.
Rebekah (Runcie) Glisson

2:59 PM  
Blogger KentF said...

Thanks Laura for your authentic voice. Continuing to pray for Ira and all the Hays'.

4:24 PM  
Blogger Marcie said...

Laura,
What a beautiful story! I went to the website & printed the crochet instructions. While I am quite a novice at this, I gave it a shot. It made Fred laugh (well, okay I did too). I've spoken with my mom who can knit, so maybe she can set me straight & I'll try that approach. I can't wait to get some made & sent off... they are beautiful caps.

2:27 PM  
Blogger Alyssa said...

Sweet Laura- I just want you to know that you guys continue to be in our thoughts and our prayers. I am amazed by the ease with which you share your thoughts and feelings, and I pray that you will continue to find strength to take care of your precious family. We love you!

10:44 PM  

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