It’s a really hard question to answer. “How are you guys doing?” We get asked every day and I love that people don’t forget that it’s on our minds constantly. Most days we are doing really well. Life has continued on and I’m not at a difficult point in pregnancy. I am 27 weeks along, so for me this means a doctor’s visit about once a week (4 hour visits). I can still chase Weston around and roll over at night and my friends are throwing a baby shower. It’s a fun stage.
But I also tell people it feels like a calm before the storm. Starting in a few weeks I will need to go to the OB 3 times a week and the office is an hour away. I still have to pick more specialists for Miles. Many bills are close to their past due point. And Miles hasn’t been born yet. Attempting to wrap my mind around the pain I will feel when he is taken away from me in his first few hours of life is incomprehensible. Knowing how serious his surgeries are and that there is chance I could never see him again. What if I don’t have any pictures of him? What if I picked the wrong hospital? I try not to spend too much time thinking of these things but they are all just around the corner.
There is a reason God can see the future and we can’t. If we could, maybe we wouldn’t walk the road we are supposed to, knowing that fear is ahead. Maybe we would never turn the corner knowing what is there. God knows our human emotion would keep us from venturing into the unknown and we would stay snuggled in a point of safety and security. But God requires more of us. The fact I even know hard things are around the corner is more than many people know in life. It’s an odd feeling.
A couple weeks ago, Bryce, Weston and I went to Washington to see my family. We had an incredible time enjoying fall- football game, apple picking, stomping on leaves and drinking hot chocolate. My mom’s friends had a little shower for Miles and I felt so excited to have him arrive.
|Weston- 18 Months Old.|
|Favorite word is “Apple”|
|26 weeks pregnant with Miles|
On our drive back to the airport I received a call from my doctor’s office. I had gotten a genetic test done the week before called the MTHFR. It looks for a certain hereditary mutation in an enzyme that helps people process B vitamins and folic acid. I had tested positive for this mutation. To explain it as best I can, this means that my body cannot properly utilize the mega doses of folic acid I had been taking to prevent Spina Bifida. In fact, folic acid actually exacerbates this problem and makes me more depleted of folic acid. So what is the solution to this? I would have simply needed to take a different form for folate (the natural form of folic acid). I basically just needed a different vitamin.
I flew home alone with Weston after finding this news out. I had gotten the flu and had a high fever and it was one of the worst flights of my life. At first I thought the news of the MTHFR was helpful because it shows me what I can do differently in future pregnancies. But then the anger set in. I had done pre-conceptual counseling before ever getting pregnant to specifically discuss how to prevent Spina Bifida. I was told to take lots of folic acid. I have seen dozens of high risk specialists over the past few years and no one mentioned this simple blood test. In fact, they all told me to take lots of folic acid. This is exactly opposite of what I should have been doing. I felt failed by doctors. This is not a rare condition so why wouldn’t anyone take 3 minutes to mention it? Truthfully, my heart was shattered again. It was easier not knowing why this happened.
It got a little worse after that. I had an OB appointment and ultrasound the next day. Weston got sick and Bryce had to take a day off work to watch him while I went to the appointment. I don’t really like the perinatal OB group I am with but I don’t have the energy to transfer doctors again. On the ultrasound, Miles looked a bit worse than we originally thought. It was confirmed he has a clubbed left foot. This happens because he is already experiencing paralysis in the womb and cannot properly move his legs. The location and size of his lesion (opening in his spine) is larger and higher than we were told. It now opens over 4 vertebrae. The ventricles in his brain are already at full capacity so if they increase even 1 millimeter, he already has hydrocephalus. This happens because the brain is blocking the spinal fluid from flowing around the body correctly so it builds up in the ventricles in the brain. These children need to have shunts put in their brains to drain the fluid.
Of course the delivery of this news was terrible and insensitive and very matter of fact but I have gotten used to that. I called Bryce to tell him but on my way home I ran out of gas on the freeway. It just felt like the enemy was taking his stabs. When I did get home, Bryce looked the most depressed he has been through all of this. He said something that really broke my heart, “I have lost hope.”
When you take someone’s hope away, you have taken everything. You take the sparkle from their eye.
Many of the miracles we had asked God for were already disappointed by these results. Though none of the news was shocking or unexpected, it was enough to knock us back into reality. We were hoping Miles could be a “best case scenario” and now he is falling into the bad scenario category with certain things.
I could just see it in Bryce’s demeanor over the next couple days. He was sadder. We took a night without Weston and went to dinner at Maggiano’s together. We had a great night and talked about Miles the entire time and what we are afraid of and what we think God’s plan is in all of this. It was therapeutic to sit down for a couple hours and just talk. Bryce said it scared him that he could go from a place of happiness to deep sadness so quickly. That’s how this journey is going to be- up and down, then up then down, and up again. We also admitted that initially we had drawn very close to God and gradually we drifted away again and this is a reminder that we need to stay close. It’s in human nature. We draw close to God, walk beside God, then run from God. Only to realize we need to draw close again.
In it all, we just have to keep hope. When Miles is born and his disabilities begin to unfold, we have to hope. When the news is so bad it can’t seem to get worse, we hope. And then we praise God. We praise if the answer to miracles is yes and we praise if they are no. When it feels like there is nothing to praise, we remember what God has done for us and we dig deep into our soul, and we praise. And when we see our beautiful son, perfect in God’s eyes and in ours, we get on our knees and from the bottom of our hearts, we praise.