Running Inspired

Whew! What a busy couple of weeks it’s been. We’ve learned a lot about Miss Meghan here lately, so here goes…

Meghan had a follow up with her ophthalmologist, who said she has a 6^th nerve palsy which is causing her strabismus. As this can sometimes be a sign of increased pressure in her brain we are watching her closely and following up with her neurosurgeon and the ophthalmologist again here in a couple weeks. We also met with her neurologist. Since we have been concerned for some time that Meghan has not been gaining weight appropriately- even despite a high calorie formula, solids, and breastmilk- he took a closer look at her MRI. Her pituitary gland looked abnormal to him, and coupled with some other structural abnormalities in her brain he is concerned that she may have septo-optic dysplasia- a disorder that has a spectrum of effects, but in Meghan’s case we may not know the full spectrum until she is older. This new information prompted a referral to a pediatric endocrinologist. We met with him last week, and had some blood drawn. Yesterday we found out that her growth hormone level was indeed low, and today we headed back to the hospital for more blood to be drawn. This next test will tell us whether or not we will start her on growth hormone replacement. We have also been able to discuss her CT results with a few different doctors, and we are told that Meghan has something called Klippel-Feil Syndrome. It describes some of what developed abnormally in her cervical spine. You can read more about that here:  http://www.ninds.nih.gov/disorders/klippel_feil/klippel_feil.htm . We were able to schedule our appointment with the neurosurgeon at Shriners in early December, and I am very hopeful that he will be able to better understand her specific anatomy, and come up with a plan for monitoring her condition.

This past weekend, I ran the Columbus Half Marathon in Meghan’s honor, with a team of ladies that love, support, and pray for our sweet girl regularly. This year, the marathon partnered with Nationwide Childrens Hospital. Each mile featured a “patient champion”, and it just so happened that mile 7 was a little guy with hydrocephalus like Meghan. You can read more about the patient champions here:  http://www.nationwidechildrens.org/marathon-miracle-mile-patients . Their presence along the course made it one of the most inspiring things I have ever done. I have no idea what Meghan’s future holds. I do not know what her mobility will be like as she grows. We know now that since she has Klippel-Feil Syndrome it is very likely she will have to have a fusion of her cervical spine (neck) in order to protect her spinal cord, which will limit her ability to turn her head. I ran this year for her- for everything she has endured in her 7 months, for the joy she brings me daily, and for whatever her future will hold. I paced myself differently this race- maneuvering to high five as many people as possible, talk to other participants, and at mile 7 you can bet I stopped running altogether to give Toby and his family a hug. It was certainly not my best time- but I am totally ok with that.  Meghan has taught me to pace life differently these days. I run with endurance and strength on loan from God which sustains me through the physical and mental demands of having a child with special needs, but also with JOY, and lightness and a peace that cannot be explained. I am running inspired, because I race for Meghan Grace.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us. Hebrews 12:1

D-Day

There are certain days and moments in your life that you will never forget- those days that are so firmly written in your heart and mind that you remember in intricate detail where you were, what you were wearing, the weather….October 7^th 2011 was the day we had our anatomy ultrasound for Meghan one of those days. It was one of those brilliant clear and warm fall days, so warm that Joe and I had taken Addie to the park to play since we had some time before our appointment. For a short time, we lived in the moment, relishing the anticipation of the day. Soon we found ourselves in the exam room, the ultrasound technician taking so many images that Addie began to get fidgety and I started to get that sinking feeling in my stomach that accompanies days such as these. It wasn’t long before anticipation turned to anguish as our perinatologist gave us the official diagnosis of severe ventriculomegaly. The conversation that followed included words like “poor prognosis”, and a statement that I never wanted to have to consider-“there is the option for termination…”.  Even if I didn’t quite understand all that severe ventriculomegaly entailed, I certainly began to understand the severity when that was presented as an option. While it might have been an option for some, it wasn’t for us, so we left the office with a plan for follow up with the fetal care coordinator. That afternoon Joe and I researched, prayed, and tried to come to terms with what it all meant. It was that afternoon that Joe and I chose Psalm 139 as Meghan’s verse:

“For you created my inmost being, you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made, your works are wonderful I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. “ Psalm 139: 13-16.

Joe and I clung to that verse in the following weeks as we came to terms with having a child with special needs. We have held tightly to the belief that the Lord knew exactly what he was doing when he gave us Meghan Grace. While we have known about Meghan’s scoliosis for a while now, last week Meghan had a CT of her brain and spine and we learned that it is quite a bit more complicated than we expected. Our neurosurgeon said that her brain is filling in nicely and as far as her shunt is concerned we are in a great place. However, the results of her spine images were a little concerning, and led her to refer us to another neurosurgeon at Shriners Hospital in Philadelphia who specializes in complicated congenital abnormalities of the cervical spine. We are still awaiting information from that physician. Her therapies have been put on hold until we hear from the specialist.

One year later, the same verse we prayed for her from the beginning has new meaning to us as we reflect on the fact that indeed her frame was not hidden from His eyes. October 7th, 2012 we are in the midst of more uncertainty- we never thought we would be dealing with something else besides her hydrocephalus. There are still moments when I see other babies her age doing much more than she can do and there is pain that comes from a place I can’t explain, and I am sometimes afraid to admit. I am grateful though that one year later, with lots of prayer, we've learned how to live with earthly uncertainty while we fix our eyes on what we know is certain: The Lord gave us Meghan exactly as she was meant to be. She is a light, and a joy, and the gift of her life is so very precious to me.