Monday, November 17, 2014

World Prematurity Day -- Help Me Spread the Word!

15 million babies are born too soon every year.

Premature birth kills 1 baby every 30 seconds.

I can not even see to type right now. I am typing through tears streaming down my face.





17 years have passed since I became Mommy to three teeny tiny very premature babies. 17 years. And still typing the facts about prematurity feels like someone is punching me in the stomach. I can smell the Neonatal Intensive Care Unit as I type. I can feel the fear of that hospital stay as real as the bile trying to choke me right now. I can hardly breathe.





My premature babies are in the process of applying to college, interviewing for scholarships and planning their futures. This is no small miracle. This is no small blessing. Benjamin, Mason and Claire were born at the University of Chicago -- one of the best NICUs in the world! Oh how grateful to God I am that He alone placed Wade and I in the right place for that time.

Ninety percent of premature babies born in high-income countries will survive birth. But dear ones, 90 percent born in low-income countries will die.

We need to raise awareness for how to care for these the smallest of the small. Early and exclusive breastfeeding can save lives. Skin-to-skin holding and swaddling can help babies stay warm. Both are available even without intensive care and both are proven to SAVE LIVES!

I felt completely helpless when I was rolled into the NICU to meet my trio. And then this beautiful thing happened, Mason's NICU nurse told me to take this baby wearing only a diaper and button him up in my shirt right against my skin. His oxygen levels stabilized. His body temperature remained constant. My baby that weighed barely two pounds, was perfectly content. It wasn't just a GOOD place for him to sleep. It was the perfect place for him to do what his body needed to do at that stage.

I spent the next weeks going from Mason to Benjamin to Claire -- taking turns buttoning them up in my shirt as I rocked and softly sang about Jesus love over and over and over, begging God to grow them in accordance to His perfect will.

We called it Kangaroo Care. Even today, I have the sweetest stuffed kangaroo sitting on my bedside table. A thank you gift from three teenagers who may have heard the story once or twice.






The NICU held parent meetings. The first meeting the pediatrician asked if we were kissing our babies. I was terrified he was going to tell me to stop. I could not have stopped kissing those precious angels if my life depended on it. I was petrified of what he was going to say.

"Kiss them. Kiss them. And kiss them some more," He sternly told us before smiling. "Your body, Mothers, will take any infection on their skin and make the antibodies for them. Your milk will be the best medicine they can receive."

Oh, my dear ones, I sat a lot taller after that meeting. I walked with my head held high. Yes, I had delivered prematurely and I would wrestle with that guilt for years. But as the Mommy I was able to provide exactly what they needed to grow, to thrive, to be able to apply to colleges 17 years later.




We must spread the word. We must educate girls and women and even health-care workers about the importance of skin-to-skin contact and breastfeeding. For the sake of our tiniest babies, for the sake of the blessing these lives will undoubtedly bring, will you help me spread the word??



Carol - The Blessings Counter

Thursday, November 13, 2014

When we feel unwelcome at church.

I read this article yesterday after my 17-year-old daughter posted it to her Facebook page. It resonated with me. It resonated deep in a place that feels the pain the author writes about. Reading the comments my sweet Claire was receiving made me want to address the topic of church and the special needs family. But the inevitable pain of delving into this particular subject matter was something I strongly wanted to avoid. So I shared the link to my personal Facebook wall and tried to walk away. My hope was that the sharing would be enough. The sharing would alert my friends that this is a real issue. And I could leave it at that. Walk away. Not share personally.

But the comments have rolled in. People have shared the link on their walls. And people have commented.

Again. And again. And again I have read that yes, the church has been a painful place for Mamas with children who present with all manner of special needs. The gamut runs from Autism and Downs Syndrome to Cerebral Palsy and Spina Bifida and everything in between -- families with needs as diverse as the children they love are all facing a common problem: the church does not know what to do with us.

So I am sitting down to address a problem that I have addressed throughout the last 17 years over and over and over again. I sit here typing furiously knowing that even last week as I drove to my church, the echo in my head was that "This is hard. Church is hard for people who hurt."

Please hear me when I say that this is not even a commentary on our current church home, this is a commentary on what if feels like to experience pain from the place you expect/need/desire to find comfort. I know we can do better. I know Jesus intended for us to do better.

The first two years of the triplets' life we were infrequent church goers. Oh believe me when I tell you that this was way way way outside what my Bible-belt-bred heart thought was "OK" but it was our reality. The trio were born so very early, we had to protect their lungs first and foremost and a church nursery in Chicago in the winter was not the place to do this!

But beyond that, I knew we overwhelmed everyone in the nursery department. If they expected six children and I walked in with three that threw their numbers and their worker to baby ratio completely off. I saw it in their faces. I heard it in their voices. We were not unwelcome but we were not welcome.

After sitting on the back row, taking turns carrying babies for emergent diaper changes for three weeks in a row, Wade and I decided we would do better having Bible study at home where you know, we might actually read an entire verse at nap time!

When we learned the boys had Cerebral Palsy I had lost my place of fellowship due to that lack of attendance. It was an empty lonely season for Wade and I as we tried to find the spiritual sustenance for facing the frightening diagnosis outside of the church.

We moved to Minnesota right after the trio turned two. The first church we visited was one of the biggest in the small town of Rochester. The nursery was labeled Creepers, Crawlers and Walkers. I tried to explain that Benjamin, at two, didn't creep, crawl or walk but that he was so bright, so very bright he needed to be in with the two-year-olds. It was a long morning as I was sent from person to person to explain and get "permission". I left heart-sick. Sad. And knowing that I could not explain this every single Sunday. I can handle a lot but this explaining was more than I could bear.

It became my goal to find a tiny church -- one where every one would know us immediately and I would not have to explain the wonder of my trio. We found one that welcomed us. Furthermore, the couple -- Mrs. Patti and Mr. Norman -- who taught the  two-year-old Sunday School class were precious to my heart. Norman purchased a book on Cerebral Palsy to better understand the boys. He built a little step to place under Benjamin's feet so that my son felt stable sitting at the table with the class. I felt like we might heal.

But when they promoted to the next age group, the teacher was not as comfortable with my boys. We came to pick them up more than once with Benjamin laying flat on the floor while kids jumped up and over him. The teacher simply did not know how to handle him. I offered to help. I became an assistant teacher in the class and gave up my own Sunday School hour to help my children. I was ok with it at first.

Then someone told me about the Wednesday night programs. Oh, yes, I had loved Wednesday nights growing up, could my children participate? I was sent to the director to ask her opinion. (Read: No one says YES automatically to the special needs Mama.) Her reply: Of course they could participate.....as long as I volunteered to teach.

And guess what? I said ok. I volunteered. I spent the next couple of years teaching my children on Sunday mornings and on Wednesday nights. I now had no extra time for the adult Bible Study at my own church.

By the time the triplets were five, I was burned out. I was exhausted. And my feelings were hurt. I was completely empty. I loved serving others. I did. But I was used up and poured out. My spiritual and emotional tanks were past empty. I had nothing left to give.

Perhaps you have gathered that I am a strong-willed -- some might say stubborn -- human being. I love God. I love church. I love being in fellowship. I even love SERVING through my faith. I refused to give up. I refused to give in. I knew in my heart the Mrs. Patti and Mr. Normans of the world were out there and we would rejoice in them rather than get weighed down completely by those who didn't know what to do with us.

But y'all, the reality is wearing on a person. We moved to Phoenix and visited many churches. One told us that 8-year-old Benjamin would have to sit in the "wheelchair" section of the church while the rest of us sat on the other side of the sanctuary. I pointed out that he was a little boy and really wanted to sit with his family. We were told that "You should have gotten here earlier then. I can't help you."

Really? Really? We asked for the help of two of the other "greeters" before leaving the church prior to the start of the the service. I was in tears.

As special needs parents, our hearts hurt. We watch our babies be poked, prodded and operated on more often than we think we can endure. We deal with fears of the future, and obstacles of the present. We shop for wheelchairs while our neighbors buy basketball goals. We hurt. We hurt. And we need to be mad at someone for the hurt.

Anyone less stubborn than me -- less determined to FORCE fit her family into the church -- will not just keep pushing, begging and pleading to make a place. Anyone less stubborn will simply walk away from church and never look back. Anyone less stubborn will direct their full-out anger about the disability at the place that should be offering them healing, love and embrace.

And I know this. I know this because I have been told over and over and over again that my sweet special mama friends have walked away and not returned. I have witnessed the pain. I have seen the heartache.

I have walked away from different churches that could not meet our needs. I have tired of the search. I have tired of the push. And I am stubborn.

We have to find a way to make a change. Jesus did not come to save only the fully-able. He did not come to bless our lives in ways that mean we never  have heartache -- and that goes way beyond parenting a child with special needs. No, he came to give us the promise of life-everlasting, and THAT life will be without heartache.

But dear ones, we ARE meant to ease the troubles for our brothers and sisters. We are meant to cry with the hurting, rejoice with the blessed, and love the unloved. We can not be the hands and feet of Jesus if we only welcome those without pain into our midst.

And listen to me carefully, opening your arms to special families DOES NOT MEAN allowing those mamas and daddies to VOLUNTEER to teach! Do you hear me? Embrace them. Give them time to be encouraged and taught and loved on in classes for them with the absolute assurance that their children are precious in your eyes!!

Yes, Benjamin needed some extra help in his classroom. Mr. Norman, Mr. Max, Mr. Gary had no problem asking him questions about the lesson while his classmates did their little craft projects. It didn't stress them or him!

The teen volunteer -- our beloved Miss Christina -- was a special buddy to the boys one summer so that they could participate in Vacation Bible School. She did the extra things they required so that the main teacher did not have to. Wow. What a wonderful way to get your teenagers involved in service at your church WHILE serving a population hungry for church.

Bigger churches often have paging systems for young parents. Implement the same for your special needs parents. Mama will relax and be open to having her heart cared for if she knows you are going to reach her with any concerns for little Johnny.

Have a  volunteer on alert that your church can contact if a special needs family is visiting. Be ready to call on that volunteer to explain the services your fellowship can offer, as well as to take the sweet child and plug him in to his own class while Mom and Dad worship and experience. (Because a Mama who has to make sure her child is safe first and foremost, will not be able to worship in a place where the welcome team shrugs their shoulders and says, "Oh I think we have something in place....but I'll have to find someone to help you." No no no. The answer has to be organized. Thought through. Detailed.)

We can do better. It does not require much. A willing heart. Open arms. A desire to serve those easily forgotten and pushed aside.

Will you step up? Will you make a difference in the lives of families who NEED you?

Are you willing to be the blessing?






Carol - The Blessings Counter

Sunday, November 9, 2014

A Golden Birthday!!

Nine years.





Today is the Golden Birthday of our Little Red.




Her birth and life have been a game-changer for our family.




We've learned to focus beyond the Cerebral Palsy.





We've learned to giggle at the absurd.






To celebrate the amazing.





And to be embrace all that this little redhead offers....





When she was four someone asked her her name and she replied: "I'm Cate. I'm gift."






And she was absolutely right!! Happy birthday, my darling gift!! I am so grateful to be your Mommy!!




Carol - The Blessings Counter