Our sweet Erin is four years old today!
Whenever one of our kids has a birthday, my mind always goes reeling back to his or her birth. I am always amazed at how the years have flown by, and yet I can hardly remember what life was like before that child arrived. I fondly remember Erin's birth. In many ways, her birth was typical....and yet as I reflect on the memories in the delivery room and the emotions we felt that day, her birth was also very different.
Whenever your child is given a diagnosis that will have a significant impact on her life, you have concerns....worries.
From Erin's birth story...
On the first day of March, 2007, our seventh baby came into the world. Erin Camille was a beautiful baby. As we met her for the first time, I noticed, at first glance, that Erin had slightly slanted eyes and a very small button nose. As I held her for the first time she seemed a bit floppy. I was pretty sure that she had Down syndrome. I remember putting that little bit of information into the back of my mind, even in that split second, because I wanted to enjoy her first, and deal with the Down syndrome second. I remember being amazed at how calm I was, even when Erin was not breathing. The doctors and nurses quickly took her over to the warming bed to try to get her breathing. With some vigorous stimulation, she was soon breathing fine, but still not crying. In fact, the room was eerily quite. Mike kept glancing at me, wondering why the room was so silent. The doctors and nurses were whispering and there was not a single smile in the room. This was not at all how we remembered our other six joyful births. Finally, after several minutes, my OB doctor kindly explained to us what I already knew. Erin had characteristics of Trisomy 21 (Down syndrome) and he asked our permission to do the genetic testing which would confirm the diagnosis.
As we took in this new and unexpected information, we had many questions. I remember being most concerned with how my other children would handle the news. I wondered how difficult it would be for them, if they would feel disappointed, and how a new sibling with a disability would affect our family. My husband worked through his emotions with lightning speed; in the course of about 10 seconds he felt sad, then guilty for feeling sad, and then incredibly blessed. He felt Jesus was in the room. As these thoughts raced through our minds, it became clear to us how much we did not know about Trisomy 21. One thing we knew for certain, however, was that God was speaking directly to us through the gift of our beautiful daughter. We knew the odds of conceiving a child with Ds was only about 1 out of 100; even in my “advanced maternal age” (I was 39). With those odds we knew we had won some sort of lottery. While we didn’t know what it all meant at the time, we did know that God had planned for Erin to join our family.
The first of my worries...
how my other children would react to a sibling with a disability...now makes me literally laugh out loud. There is no way her siblings could be more enamored, more smitten or more in love with their sister Erin!
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| Erin was baptized on Divine Mercy Sunday, one of my favorite feast days. | | |
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Do what You will with me, O Jesus; I will adore You in everything. May Your will be done in me, O my Lord and my God, and I will praise Your infinite mercy. - Saint Faustina
From Erin's birth story...
We believe that God does not make mistakes. When you believe this from the bottom of your hearts, you can then celebrate your child, Down syndrome and all, as you would any of your other children. And that is exactly what we did.
I also cannot think about Erin's birth without also thinking about that other
little something extra....the hole that came in her heart.
From Erin's birth story...
As Erin neared three months of age, we discovered that her heart came with a little extra something too - a hole. At least we finally had an answer for her feeding difficulties. It was a very intense summer, with many heart medications and doctor visits. As Erin lost all energy to nurse and then take a bottle, we learned how to feed her with an ng tube, which is a temporary tube that goes through the nose and into the stomach. At one point, I was spending six hours a day trying to get enough calories into her. In our difficulties we once again relied on, and took comfort in, our Catholic faith. We prayed countless memoraries, I sang the rosary to Erin as I attempted to feed her with the bottle, and we became friends with the late Dr. Jerome Legeune, the Catholic geneticists who discovered Trisomy 21, and whose cause for canonization was started by his friend, Pope John Paul II.
On September 19th, at six months of age, Erin went off to open-heart surgery, while we, her parents, went on a powerful spiritual retreat. Both were located at Children’s Hospital of Milwaukee. Once again, God was good. While He was leading the surgeon’s hand, He was also leading my husband and me closer to Him. Our first meditation took place in the waiting room of the OR, and the remaining meditations took place on the PICU floor. It was not our favorite retreat but it was certainly the most powerful and the most rewarding. The main spiritual exercise for this retreat consisted of handing our six month old baby over to a complete stranger who would hold her heart in his hands. Through it all, we relied on these words: "Jesus, I trust in you." (again..Saint Faustina and Divine Mercy!) Erin came through the surgery with flying colors.
When I think of Erin today, there is a single word that instantly comes to my mind....
Gratitude. I am so very thankful that God gave us this little girl that we didn't even know we needed.
He knew.
There are fringe benefits that come with parenting a child with special needs. It is so underrated. In fact, all children come with special blessings and special needs, of course. However, I have come to understand that parents who are blessed with an extra-ordinary child do not take this fact for granted. We marvel at every milestone.
I believe Erin has allowed us to see things more closely to the way God sees things, which can be very different from the way the world sees things. She helps us to sift through the muck and cloudiness of the world. She forces us to get right to the heart of the matter....what really matters in this world. Her little soul is so pure and
real. She is 100% genuine in all things. Her yes means yes and her no means no. I have not noticed even a hint of pride in this little girl. Her sense of empathy can be off the chart. She cries when her siblings are sad. She loves unconditionally. She radiates such joy, at the simplest of things. For example, she becomes giddy when her dad plays one of her favorite songs in the car, shouting, "ank you Daddy!" after every single song. While the world places value on productivity, monetary success and intellectual achievement (which can all be good things, if in proper perspective), Erin reminds us of the value and dignity of each person, even with their imperfections and struggles, every moment of every day. Her little soul is like a little glimpse of heaven to me, and that is a gift I am very thankful for!
