The Goodwins

We were recently on vacation in Florida and my mom commented on how cute the girl in the pink hat was… that girl is our daughter Ella. And she is very cute, even without her pink hat.

Ella is in hats a lot to protect her many scars from the sun, and she shines underneath them all. She is a beautiful little girl and even in her “I’m almost 4 and I can do it myself attitude” we find so much to love. She is the light of our life (along with little brother Justice) and we have learned so much from her.  But it isn’t her Down syndrome that is teaching us, it is Ella herself and her personality. I don’t know if taking away her Down Syndrome would change who she is or not, but as her mom I would never be willing to find out even if I could. I love her everyday just as she is.

Before Ella I loved. I loved her dad, I loved my family, I loved living a life full of travel and adventure, I loved chocolate, I loved my life… but I didn’t know how deep the love of a child would be. And I never thought about if I could ever love someone with Down syndrome – it simply never crossed my mind.  And then Ella was born and my heart was hers in an instant. The first year was a struggle of emotions and grief over the loss of what we thought our plans for her future would be, but we prevailed in love. The next several years were filled with struggles from surgeries and medical procedures but we prevailed in love. And now as all our known struggles are behind us and we watch in awe as Ella discovers a whole new world in school, we continue to prevail in love. Our hearts are overflowing!

But what I know, and what I want everyone to learn is that Ella is Ella. She is not a girl with Down syndrome who happens to be our daughter, or a teacher’s student, or a child’s friend.  I pray that Ella will be accepted into our world for just the person God has made her to be; that she will find her place in life and be happy and fulfilled. It’s the same prayer I imagine all parents have for all children. When I look into her future I am afraid for all of the unknowns that lay ahead but in truth, most days I forget that she has Down syndrome as it is so easy just to enjoy who she is.  She laughs and giggles and cries. She dances and runs and walks. She smiles and pouts and cheers. She is simply Ella, our amazing little girl.

Ahead I know there are more struggles waiting to find us and her, but today everything is perfect and just as it should be.  God has given us the gift of love in both our children and that will always be more than enough for us.

Today Polly will be under anesthesia for her angiograph to aid the surgeons in understanding where the surgery in her brain should occur.  The date of the first surgery will be set after this, but is likely to be in a couple of weeks.

Please keep her and her parents in your prayers so she will be stroke and seizure free and bounce back from these procedures and surgeries and that her parents will feel the presence of the Lord during these tough times.

You can keep up with the Marchenko’s here.  http://lintofpocket.wordpress.com/

I wanted to updated everyone on Polly, the Marchenko’s 3 year old daughter with Down syndrome. Last Sunday Polly appeared to have multiple seizures. As she’d never had seizures, she was taken to Children’s Memorial in Chicago, not too far from the church where Sergei Marchenko pastors.  He and his family are our sponsored missionaries for Bonnie and my church adult bible fellowship (’ABF’) group.

The doctors at Children’s Memorial determined that she has Moyamoya syndrome.

In Moyamoya syndrome blood vessels in the brain are abnormally constricted which may lead to clots (thrombosis). To compensate the brain will often develop “collateral circulation” vessels.  Unfortunately these vessels are typically weaker and prone to hemorrhage, aneurysm and thrombosis. Persons with Down syndrome, neurofibromatosis, or sickle cell disease have a higher rate than moyamoya malformations but some studies indicate that it may be also inherited.

Children with Moyamoya may experience strokes and/or seizures. Often these are transient ischemic attacks (TIA) or “mini-strokes” and are often accompanied by muscular weakness or paralysis affecting one side of the body, or seizures.

It appears that our beautiful little Polly experienced at least one TIA and there is some decreased motility of her right leg.  Fortunately the doctors are expecting a full recovery of that leg.

Moyamoya is often treated with medication as well as surgery. While surgery does have risk of additional strokes, in the vast majority of cases the patients are stroke free for a good period of time. Of course there are multiple types of surgery and medications available to manage and treat the symptoms of Moyamoya syndrome.

In regard to Polly, I just learned that Polly will be undergoing surgery in Mid-November.

Please keep Polly and her family in your prayers.

Our dear friends are in the process of adopting a beautiful little girl from eastern Europe. Her name is to be Evangeline. She is a child with Down syndrome, just as their youngest Polly.

As a parent of a child with Down syndrome we are blessed to have them as friends and are supporting them in their adoption quest both in prayer and financially.

Before Sergei began pastoring at the Christian Fellowship Free Church in Chicago, he and his family attended The Chapel in Saint Joseph, MI. Their former church family had a baby shower and this video was created for that shower.

For more information on their adoption process please go to http://expectingevangeline.blogspot.com/

If you ware interested in providing financial support please go to http://www.reecesrainbow.org/sponsormarchenko.htm

You may notice the new “logo” in the top right corner of our blog. It will be there for a while, but hopefully not TOO long. Let me tell you about it.

One of the first couples we met when moving to Saint Joseph, MI we met while we were in Iowa and they were in the Ukraine.

Four days before Ella was born, Sergei & Gillian Marchenko delivered their youngest daughter Polly in a hospital in the Ukraine. We both learned at their births that our daughters have Down syndrome. We “met” online through the Michiana Down Syndrome Support group. Having another family who had a new daughter with Down syndrome was such a great blessing to Bonnie and I when we moved, and we are so thankful for their support and friendship, and we discovered after moving that we were attending the same church!

Well, our amazing friends, who are now in Chicago where Sergi pastors a church in the Wrigleyville area, are adopting another little girl with Down syndrome from Eastern Europe. Their newest little angel will be named, upon adoption, Evangeline¹.

Evangeline turned two in October. She is living in an orphanage and we hear she has grown to be a healthy, sweet, social little girl. Her adoptive paternal grandmother recently visited little Evangeline and I hear is enamored with her.

Children with DS in her country typically transition from the orphanage to an institution when they are four years old. Devastatingly, a staggering number of children who are institutionalized in her country do not make it to adulthood².

Sergei and Gillian share that as soon as they saw Evangeline’s sweet face they knew she was meant to be their daughter. Their older daughters Elaina and Zoya are very excited about having another sister to love – even volunteering to do without Christmas presents to help bring Evangeline home to them!

International adoption is a huge financial obligation and the Marchenko’s have recently started a “fund raiser” asking those who can to donate $10 (or more) to Evangeline for Christmas.

I know money is tight and you all don’t know Sergei and Gillian personally, but this small gift will be the world to our friends, their family and little Evangeline. If you would like to help bring Evangeline home to her new family you can donate online here through Reece’s Rainbow. Reece’s Rainbow has received their 501(3)c tax deductible status, so these contributions are deductible³. See their website for more information. Alternatively, you can send a check⁴ to them at:

The Marchenko Family
c/o Reece’s Rainbow
PO Box 2055
Dacula, GA 30019

Whether you can or not donate, please keep this family and future newest member in your prayers! Follow their adoption process at Expecting Evangeline.

God Bless,
Kirk and Bonnie

1. Evangeline is Greek for “Angel” [↩]
2. Yes, I am intentionally being vague on the country to avoid potentially upsetting the country who’s controlling this adoption process [↩]
3. They qualify as a public charity under IRS code 170(b)(a)(A)(vi) [↩]
4. and save the Paypal fees [↩]