Doing Better

I'm here with Paxton who is sleeping well today. He had a sedative in the night to help him settle down, but has done pretty well since then. He is bundled all cozy (I like this wrap, thanks, Nurse Mackaela) and resting well. Finally... yeah!

This week we are meeting with doctors to learn more about the trach, G-tube, and possibly a nissen-fundoplication surgery if he has bad reflux. We are also having another ultrasound to check his ventricles today, and an echocardiogram to see if his heart murmur is by chance closing tomorrow.  Trach for sure later this week and G-tube either the same day or next week.  Another eye exam/possible surgery next week as well.  So that's what's on the immediate radar.  Hopefully the little champ will keep getting some much needed rest and be able to eat more steadily and even put on some weight this week. Right now he is back to his birth weight again of 3 lb, 13 oz.

When I first found out about Paxton's situation, I immediately searched lds.org for "special needs children." The first talk that came up is still my favorite. The first paragraph of it has been ringing in my mind for the last three weeks and I have been wanting to share it.

"With a prayer in my heart for understanding, and with some timidity, I speak today concerning parents and children with special problems. I do so because I am persuaded that these extraordinary challenges are, as the Savior himself said, that “the works of God should be made manifest.” (John 9:3.) How these challenges are met can often be the expression of the very essence of the gospel of Christ." -The Works of God, Elder James E. Faust *

We are definitely witnessing the "works of God being made manifest." It is obvious in the way we are experiencing that with Paxton and the tender mercies we and he have received, remembering to thank the Lord for "every incremental blessing" (great advice from dear friends). But we are also experiencing the "very essence of the gospel of Jesus Christ" as we are the recipients of such amazing love and service. You all are doing so much for us right now. Family, friends, and ward members have been volunteering to do so much, and we have been made aware of people whom we do not even know who are praying for us: on someone's blog, a church group, or even a ward fasting for him... Paxton is being prayed for, our family is being served, and we are being blessed. 

It's humbling and wonderful to experience the physical and spiritual help of others to bear you up that your burdens may be light (er :). It's hard to need so much help right now, and even more so that it's not just for a week or two. I wanted the 'burden' to be spread thin among many, to not overwhelm any one person or group of people, but then we are trying to  create as much stability for the boys as possible, too. We are just so grateful we have such an amazing support group who are so willing to help.  

Thank you, Thank you, Thank you. We love you. We could not do it without you. 

(*This talk is so helpful and comforting to parents of children with disabilities. I wanted to share it at some point in hopes of helping someone else.

 My other favorite talk, for parents of children with disabilities is: The Moving of the Water, by Elder Packer. An interesting connection is made in this article though about parents of children with disabilities and parents of wayward children. Dave and I thought that was so interesting and wondered why such differences would be related in the same article and then it became so obvious to us... What is more painful as a parent than seeing your child physically or mentally suffering, and not being able to take it away form them, or spiritually suffering, and wishing you could do more to pull them back. They must both be awful. My compassion has expanded to all of those who are suffering in that way at this time. 

We are also grateful to the many incredible parents we are meeting at PCMC who are complete angels to their struggling children and for broadening our perspective and influencing our desires to serve our own children in such loving ways. Thank you for your examples of love! And whether they know it or not, they are indeed living examples of the "very essence of the gospel of Jesus Christ." How grateful we are to have it in our lives.)