Posts filed under ‘31 for 21’
October is Down syndrome Awareness month. Last year during this month I wrote part of our story about having Polly in Ukraine and in the midst of her fighting for her life in those first weeks the news of her extra chromosome.
It was a cathartic month, writing about that experience, remembering tears and joys, sadness, darkness, light.
With Evie home just over two months, there’s no way I can blog every day this month.
But I’m going to do a few posts. And I’m going to get practical.
I want to talk about what we do; what I do as a mother of a child with Down syndrome. Parenting Polly and now Evie is different than parenting my other kids. I’d like to explain some of that.
It’s also strangely, beautifully the same.
What we do; Sergei and I, is the same thing most other parents do. We kiss boo boos, make dinner, screw up, and try to figure out 2nd grade math.
There are things we do for our kids with DS; it’s our kind of normal but not a usual component of every day life for a family.
But it’s what we do.
And I’m going to talk about it.
I am amazed that I actually posted the whole month of October for Down syndrome awareness month. It has been a wonderful experience for me to go back to the time of Polly’s birth, to look at what I wrote then and fill in the blanks, to share with others. Thanks to those of you who read my words and commented here and there.
We’ve come a long way. I’m hardly ever sad that Polly has Down syndrome these days. It does happen sometimes, but the feelings are fleeting. I learn so much about life and myself and God from Polly.
And now I suppose we are ready for a new story.
Sergei and I have committed to pursue the adoption of a little girl from Eastern Europe who has Down syndrome.
I can’t really explain how we got here. We have talked about adoption and after my time of grieving Polly’s diagnosis our conversations about adoption included the words Down syndrome.
Then I saw this little one’s face and I knew that once again our lives were going to change. And although it will be a difficult and tedious process and at times I will wonder why in the world we would commit to something like this it all will pale in comparison to what God has for our family as we step out in faith.
This is Veronika and she is six months younger than Polly. God willing, if we get her we would like to change her name to Evangeline. We found her through an on-line ministry called Reece’s Rainbow.
Pocket Lint readers may have to make room in their lives for a little more lint, as do we.
Having Polly home, dressing her up, giving sponge baths, willing her to eat her three ounces of formula before tiring; it all helped. It made the connection real. She was my daughter.
The first day home from the hospital my mom, Sergei and I took turns feeding Polina. She fed so slow that by the time she was finally done it was time to start again. It was similar to nursing a baby; waiting for the milk to come in although my milk had dried up before I even got to hold her.
When it was bedtime Sergei pulled out our green sleeper couch and made it up. My mother would have been no use to us without sleep so she stayed in our bedroom were she initially was installed.
Polly was nestled in a carry size bassinet on top of the living room/dinning room table up against the wall. She sleeped soundly while we watched reruns of Mad About You my mom brought from the States. Sergei would laught so heartily, I remember it made me angry. How could he laugh effortlessly, totally engrossed in a half-hour sitcom when our lives were changing as quickly as the wind. I lie there in the night, exhausted, unable to sleep, listening for Polina’s breaths…and then it was morning and I frantically jumped up and checked the baby, realizing I had not fed her at all in the night.
My sleepy husband patted my shoulder, went to the kitchen for a bottle and handed it and the baby to me. He had been up with her most of the night and did not want to wake me.
Thus started our life after the birth of our daughter Polina. The next few weeks found us packing up boxes of things to store at a friend’s house. Our church in Michigan was preparing a place for us to stay. Airline tickets were purchased. We put a for sale sign on the car and met with the owner of the apartment to break our lease. Sergei forfeited his position as pastor and friends and family came by throughout it all to hold the baby and spend time with us.
We left for America three weeks later. I was sad to go but ready to touch down on American soil. Our closest Ukrainian friends stayed at our apartment late into the night the day before we left. They did not want to say goodbye and although we still had last minute packing to do, we sat with them and talked and prayed till the morning hours.
We left Ukraine unsure of the future; unsure of Polly’s needs or how to meet them, but a family of five nonetheless.
For the next year in Michigan my mood flipped and flopped from grief to thankfulness to joy to fear to grief again. I remember when I first started talking to other parents of kids with Down syndrome. One mother told me to let the baby change me. And slowly, through Polly’s first year, she did.
I grieved the loss of the child I expected, that’s true. But I have been blessed with so much more than I could ever imagine.
Tomorrow is the last day of Down syndrome Awareness month. I wanted to end these posts with a nice bow but I didn’t get as far as I thought I would.
Check back tomorrow. I have a new story to share.
This picture is the group of family and friends who came to the hospital the day Polina and I left the hospital. She was three weeks old. We were told that the hospital had a tradition of a champagne toast when a family leaves and in the same breath were also informed that they were not planning a reception for us because our daughter had Down syndrome.
Even in the midst of my inner struggle I was appalled at this kind of discrimination. Sergei and I called everyone we knew. People came with flowers and balloons, presents, smiles and happiness. Americans, Ukrainians, young and old. Someone said it was the largest group they’ve ever had for a goodbye.
We toasted Polly’s little life and Sergei prayed and thanked God for our new daughter and asked that she would fulfill the purpose he had for her. I squeezed the baby close and tried to pray too with every fiber of my being. The tears that fell from my eyes had a hint of joy.
After the hugs and well wishes we all piled in to the car to go home to our apartment; me, Polly, Sergei, my mom, Elaina and Zoya.
The city looked different to me.
We were in the hospital a total of twenty days. The last week Polly was well enough to be out of her incubator. During the day she stayed in my room with me and we sat on the high hospital bed and I tried to get her to drink two ounces of formula out of a bottle. It would take forty-five minutes. She tired easily and her suck was weak.
Polly was so small, so bird-like. I willed her to drink formula, whispering softly in her ear. Having her in my arms helped my depression, although I was still scared about the future, hers and my own.
Sergei brought Elaina and Zoya over occasionally to visit us. I’d laugh when they walked into the room, their hair all done up, Zoya wearing Elaina’s shirt, two sizes too big, Elaina squeezed into a pair of Zoya’s pajama paints. My mom did the best she could in a foreign country, hours on end with two rambunctious girls ready to play, too afraid to leave the apartment. She ate a lot of M&Ms for six weeks.
The girls decorated Polly with kisses and affection. I watched them love her effortlessly and wished I could follow their lead.
I was ready to leave the hospital but fearful too. Polly still wasn’t eating well and I knew once I left my little tan room life was going to get crazy.
We decided to move back to America. I could hardly believe it. Suddenly, all the things that I struggled with in Ukraine and about Ukraine were endearing. It was mine. Something getting taken away from me.
When I thought about leaving all that we had worked for, all that God had done in and through us in the last three and a half years I was sick to my stomach. And in the next breath I was sure that we were doing the right thing. The best place for Polly to thrive, to receive therapy and medical attention was in the States. It was the right decision for our family.
Sergei was already scrambling around, passing on the baton at church to a gregarious man who was ready for the call. He met with the land lady to sever our lease.
The plan was to leave the hospital with our new daughter that week. And it seemed the whole hospital was unsure about what to do. Nobody knew how to send us off.
The news sank in and I scraped myself off the floor and tried to pay more attention to my daughter. It was strange to be in the hospital still. I was well enough to leave but allowed to stay there with her.
I had no outlet. I am a gatherer and I wasn’t able to look for any information about Down syndrome. Our lives were on pause. The hospital had nothing to offer. I hear about women in the States who deliver babies with Ds. Some say they had to actually call some organizations like NADS and ask them to please stop calling.
And Polly was gaining strength. She was breathing more on her own, her blood platletts were better and after almost two weeks of life I was finally able to hold her. She was long and thin like Elaina when she was born. Crying before I took her she quieted down in my arms. I was amazed that this little person made so much commotion.
The nurses showed me how to give Polly a bath with cotton balls and oil, starting at her ears all the way down to the bottoms of her feet. She didn’t like being naked and thrashed her head from side to side, her little cry attempting to fill the space around her.
A sweet American woman, a grandmother to two children in the States with Down syndrome came to visit me one day in the hospital, armed with stories and photos. I looked in amazement at a family who seemed happy and content, even thankful for their family. The mother of the children wrote me an email and as I read her words, one mother to another, about God’s view of perfection and what she has learned from her kids, I cried. But the tears were a bit different then before.
I received other emails. Sergei brought print outs with him when he visited. So many people I didn’t even really know took time to write to our family.
And everyone basically said the same thing.
“Everything will be alright.”