Baby Irene meets her mom

Three years ago today was quite a drama. It was the day Irene Harrington was born. Readers who have been around since then will remember it. Irene is the daughter of Father Matthew and Matushka Anna Harrington, who at that time were the clergy family at our Russian Orthodox mission church in Starhill. The Harringtons, who had three children already, knew that Irene’s birth was going to be difficult. Doctors discovered far in advance that the baby was severely handicapped, and that the medically complicated delivery was going to put Anna’s life in danger, as well as the baby’s.

In the event, Anna lost 31 units of blood. That is, she bled out fully three times. And yet, by the grace of God, both she and the baby lived.

Here is a photo of one of this blog’s Baton Rouge readers donating blood for Anna, though he never met her:

Local folks in West Feliciana Parish, readers of this blog from all over, and others devoted prayers and offerings to the Harringtons in their great need. Somebody set up a Go Fund Me account for Baby Irene’s medical needs. I posted this shortly after Irene was born:

The Go Fund Me account for the Harringtons is just shy of $55,000. Thank you for your generosity. Believe me, it is deeply needed, and deeply appreciated. This past week, the congregations of nearby St. Pius X and St. Isidore the Farmer Catholic churches took up a collection for the Harrington family, and brought $8,600 to them to help with medical expenses. That is the Body of Christ, isn’t it? God bless those people. I’m told by local Catholic friends that Our Lady of Mount Carmel Catholic Church here in St. Francisville took up a collection for Baby Irene and her family in today’s masses. Thank you, thank you, friends.

After the liturgy today, Father Matthew told the congregation how overwhelmed he and his family have been by the kindness of so many in their crisis. He said that a woman showed up at the church yesterday with a bunch of groceries for them. “Who are you?” he asked her.

“Just a friend,” she said, then drove away.

“That is love,” said Fr. Matthew. Truly, it is. Again: thank you.

The Go Fund Me account got to over $100,000 before the Harringtons decided to close it down. They are very scrupulous about making sure every cent goes to help Irene.

Unfortunately for us in Louisiana, our mission parish didn’t make it. The following summer (2016), a family pulled out of the parish, and we could no longer afford a priest. The mission survived for three years, and we all worked hard to keep it alive, but it wasn’t meant to be. It was probably best for Irene that the Harringtons moved back home to eastern Washington state, where they could be back among their longtime church community. Caring for Irene requires lots of help from loved ones, and they’ve found what they needed back in their home state. We miss them like crazy here, though.

Today, on Irene’s third birthday, the Harringtons posted a Facebook update on her medical condition. Because so many of you prayed for that family, and donated to the Go Fund Me, I thought I’d share the news with you here:

Dearest friends, family, and loved ones near and far,

So many of you ask and keep up with how our sweet Irene is doing and we have promised to keep you all updated so here it goes– This big girl’s 3rd birthday is today! In these weeks leading up to her birthday, I have been flooded with memories during those last few weeks before her entrance into this world. I will never ever forget the very long drive to the hospital the morning of her birth. A team of surgeons and an army of nurses and support staff eagerly awaited us. So many of you kept vigil and poured out your hearts in prayer before God on that day. It was a day that brought forth a jewel and we were given a gift, of not only our sweet darling Irene Elizabeth but the opportunity for me to continue to be a wife and a mother and to raise our children. I am eternally grateful and give all glory to God. We will also never forget and pray for the staff, nurses, doctors, and surgeons who were present during this very difficult time for our family. Three years goes by quickly…after her first year, we settled back into life living in the Northwest. We have spent this last year going to many many appointments to better learn about Irene’s condition. After a new MRI and imaging, specialists were able to get a better idea of how to specifically address each issue Irene has. I’ll try to keep it concise.

Cardiology has been wonderful! We were released to go even further in between appointments as she has had no problems with her heart condition. At her last appointment, we were given a year and a half span before we have to check back in.

Endocrinology keeps close tabs on us. Irene has an abnormally small pituitary gland and it’s located in the wrong place. While she’s had no problems yet as far as her labwork is concerned, her growth is an issue. She is growing but it is slow and it’s reflective in her size…her growth is also complicated by her Spinal scoliosis as we know but she is much smaller and will likely be smaller as she gets older. Much discussion about growth hormones and her size will be had in future appointments, but for right now, we let her grow as she is. We just went to her appointment this week and I was very optimistic but her growth has not improved sadly and she is getting further and further away from the average size for her age. Having said that, her BMI is on track and she is proportionate for her size. We’re excited that she’s just grown out of 18month size things and is wearing 24 months and some 2T finally!

Orthopedics and Pulmonary–Irene has severe spinal scoliosis in her upper thoracic region. Her neck tilts to the side and as she compensates to be upright, her body shifts including her ribcage. Surgery is our only option for improvement. Right now, it’s very complicated and they want to let her grow as much as possible on her own so long as there are no further complications with her spine or lung function. As she grows there is concern about lung restriction because her rib cage has begun to shift and press. This was a major concern for us last fall and we entered into a regular pulmonary/spine clinic where her Orthopedic surgeon and the pulmonary specialist work together to track her growth and assess her progress or non-progress. Her last appointment this spring was great! Both Specialists were so pleased with her growth and activity and so we wait until her next appointment to see how she’s doing.

Craniofacial –The last “biggie” and one of the most obvious is her craniofacial structure. After two meetings with the craniofacial team, neurologist, and an evaluation done with an oculoplastics specialist, they have decided it’s too risky at this point to remove the very large cyst that is in her brain. It takes up space where her right eye should have formed. They have explained that they are also unable to remove the growth on top of where her right eye should be at this time because it could disturb the cyst inside. With the new MRI results, they are able to see that everything is connected and very complex. This was disappointing. We had hoped that as she gets older we would be able to begin the process of reconstruction for a prosthesis or glass eye. This is not possible at this time and we hope in the future it will be available to us. As for now, Irene is beginning to notice that she looks different. As a parent, there is nothing more heartbreaking. She understands when kids point at her or try to touch her eye. This has been a very difficult thing to encounter. She is perfect to us, but we sometimes meet curious people and children who may have never seen someone who looks like she does and we try to make the most of these situations. While most of our experiences turn out positive we sometimes have a negative one and it hurts. Parents are often mortified by their own child making a comment about the way Irene looks. To soothe the awkwardness, I’ve started to ask if they’ve read the book “We’re All Wonders” by R.J. Palacio? It helps to start the conversation about people who might look different. In honor of Irene’s 3rd birthday, we decided to share R.J. Palacio’s book “We’re All Wonders” as a gift to our local library with a hope that it will help other children to understand that sometimes people look different and to “choose kind”. For those who have asked me specifically about her birthday and wanted to gift her something, we would encourage you to do the same. It’s very inexpensive to purchase a hardbound copy on Amazon. It’s easy to donate a book to your local library or school or share a copy with a special child in your life. This would be such a gift to Irene!

Developmental–Through the Birth to 3 program, we’ve had therapists visit us throughout this last year on a regular basis. She has made such good strides! Her cognitive, occupational and speech skills have improved! We’re so proud of her progress. She still struggles on many levels due to vision impairment and continues to see a vision therapist. Wearing her corrective lenses full time over the last year has made a huge difference for her. Having some vision impairment has put her behind in many categories but she is quickly catching up! This coming fall she will attend a developmental preschool for little people who need a little extra help and we’re really excited about this.

Irene has spent this summer getting to be a normal toddler. What a gift! We’ve only had one appointment all summer. Her days have included park time and swimming! She loves to go to the park and swing. She also loves to swim! She has learned to jump off the side of the pool to me and isn’t afraid to go underwater. She’s quickly learning to kick her legs and move those arms. She loves to play with baby dolls, and stuffed animals. She runs and jumps and soaks up every ounce of attention from her adoring older siblings who take such good care of her. She loves church, prayers, and singing. She plays games and chase. She has a big personality and a great sense of humor. She brings laughter, love, and happiness to our lives every single day. We thank each and every one of you who have prayed for our family and cared for us, who check in on us and ask about how Irene is doing. We’re so blessed to have met so many special people through our experience of Irene’s birth. You are all loved, remembered and prayed for by us. Irene is God’s gift and we are so thankful that He’s allowed us to be her parents. Please continue to remember us in your prayers.

In Christ, Fr Matthew, Anna, Arsenios, Kyranna, Ephraim and Irene

Father Matthew is serving now at St. John of Shanghai and San Francisco Russian Orthodox Church in Kennewick, Washington. Here’s a photo of him baptizing Baby Irene in the narthex of our church in Starhill. Good times. Holy times, in fact: