We Weep With Those Who Weep...

The past several weeks have been tough for several families we know. One family lost their child five days after birth. She was born at twenty-four weeks. Another family lost their daughter, age 19, after a stroke. She had spina bifida. Another family we know just delivered their full-term son only to find him without a heartbeat. He was revived and is in NICU now. Another family we know has a son with Battens and he was in the hospital for over a week and the doctors did not give him much chance of living. Fortunately, he is back home and doing well for now. 

It is difficult to see all of this pain. It brings us closer to the reality of our own situation. We ache for these families and can relate to them, though we cannot know how they feel. Each of us go through grief and suffering differently. What is shared are the tears. Jesus shared those tears at Lazarus' tomb. He wept for the grief death and sickness brings us. Further, God the Father is not aloof to our pain for He watched His only begotten Son die on a cross. God the Father not only relates to how these parents feel, but He knows how they feel. He also has His arms around these children and nothing, not even death, can separate them from the love of God. Still, we ache and grieve, but not without hope.

Macayla is Eight!

Macayla turned eight on Friday. She started the day feeling bad, unfortunately. She was having a cluster of small seizures and a lot of reflux and mucus. Not fun. But around midday she perked up and we took her to school where she had a party with her friends. She has not seen her class in a while and they were excited, especially about the cake! She smiled and interacted. She lit up when they sang "Happy Birthday" and she appeared to feel better overall. It was also field day at school and Jacob was participating. It was a beautiful day and everyone had fun. Macayla unfortunately had another cluster of seizures that evening but she was able to smile some and drift off to sleep. 

Last week, Jacob asked Jennifer if Macayla will be with us much longer. Jennifer asked what "much longer" meant to Jacob. He asked if she would live to be ten years old. Jennifer answered honestly that she did not think so, but that our neurologist has always thought she would live to be ten. Jennifer told Jacob that most kids with Macayla's type of Battens live around 6 to 8 years. Jacob said, "Macayla's already made that!" He went back to playing. We have had two funerals this week for children and it has made us think afresh of how short time can be seem. Eight years with Macayla and half of those have been with seizures. Half of those have been with medications, doctors, hospital stays, surgeries, and needles galore. But all of those years have been with her and in spite of the pain, they are precious. Some of our fondest memories have even take place in the hospital or doctor's office. All of those years have been a blessing to us and even to other people as well. She and the other children like her show us that every life, no matter how short or afflicted, has purpose. Everyone of us has an impact that goes far beyond ourselves. 

We do not know how many more birthdays Macayla has to celebrate with us, but we are thankful and amazed at the eight we have been through. We look forward to what God will continue to do through her, however long that may be. 

A Warning Not To Blog Too Soon

I finished the last entry talking about how Macayla has been on a plateau and shortly after she begins having seizures. She had the beginnings of grand mal seizures, but they did not last too long. She was very agitated all day Sunday. Macayla's grand mals start with her chin going up and down rhythmically and last anywhere from 30 seconds to a few minutes. On Sunday, her chin would do this motion for only a few seconds at a time. She later had a moment that looked like it could be a seizure, but she moved in ways I had never seen before. We gave her Diastat to stop them, but she did not respond. It was quite puzzling. Monday she had a couple of moments early on, but she has not had any issues since. 

I guess I blogged too soon about her stability so she reminded me that we have to stay on our toes. 

Plateau

Macayla has definitely been on a plateau. We notice the progression of Battens has been full of them. She will digress and lose abilities or gain symptoms then she will flatten out and not change much for some time. The longest plateaus seem to occur in the spring and then changes begin in the summer. Last summer she started grand mal seizures. They became more and more frequent and tapered off in late fall. Then she lost bladder function at Christmas and continued to have grand mals. Then in late February or early March, her bladder function became more consistent and she only requires an occasional catheter. 

It is nice to have consistency and we cherish it. She is usually comfortable during the plateaus and routines are easier to maintain. But this plateau, like the others before it, will come to an end. We do not know when the next round of changes will come, but they will. In the meantime, we cherish her smile. She has been very interactive and that helps us assess how she's feeling. My prayer is that we will become more and more prepared and equipped to help her along the way. I want to say thank you to so many who have been praying. We could not get through this without your love and support.