Heavy Shoulders, Happy Hearts

As much as we've had happy hearts during this time of celebration and Easter, we've also had some tragic things happen as well that have just made us feel heavy.

Not too long after Easter, the wicked storms passed through AL and the rest of the southeast. We saw the footage of a massive tornado just south of the University of AL. Kyle, having been to our friends' place there, saw the location and knew our friends had to be in trouble. After calling, texting and checking facebook, we learned that they were okay. However, their house had been hit and their roof was pretty much gone. The pictures that followed were rough. It looked as if some giant had come by, ripped the roof off their house and picked it up and shook it all around before putting it back down. We are so thankful they survived, but are so sad for those who weren't so fortunate. Our church is taking donations on Sundays in the atrium and you can see more of what the Christian Service Mission needs to give out - toiletries, blankets, towels, baby stuff, batteries, flashlights, etc. on their facebook page.

This storm was a wake-up call to us as well because we didn't really have a tornado plan of action. We can't just grab Skylar and run into the bathroom and curl up in the tub. If a tornado comes through, the power is definitely going out. Then, stuff will be flying, tossed around, etc. outside of the house. The night the storms came through, just after Easter (Kyle had just gotten home), we pulled the generator in the back room so that it wouldn't get knocked over or blown away. We set up the back-up bi-pap in the bathroom and made a game plan of what each of us would be responsible for in the event a tornado came through. It was scary. Thankfully, the most severe storms split around us and we just had the power flicker a little and didn't have to act out our plan.

The next week, our neighbors down the street had a baby. They had a great pregnancy, an active labor with the baby moving constantly, however, as soon as the baby came out, he was not breathing. After testing, they said he had a condition called HIE (hypoxic ischemic encephalopathy) and he was life-flighted to Northside hospital due to his lack of oxygen. They did a procedure to lower his body temp in hopes of the brain being able to repair itself. The baby was intubated and put on a ventilator during this process. When they warmed him up after 72 hours or so, there was still no activity. They had decided to let him go, but before they did, I had the privilege of taking pictures of their precious little boy and of family members as they said their last words to him. He was a huge newborn and giant of the NICU at 9lbs 6 oz and over 21 inches long! It was truly an amazing honor to be able to be a part of their son's life and to be able to use my talents to give back to a family just like Tessa has done for our family.

Kyle and I were both able to go to his memorial service at our church this past Saturday. We never thought we would be going to another child's memorial before we had one for Skylar. It was a very sad day, but as Christians, it wasn't without hope. Sure there was grief, sadness for the parents and family, anger that this tragedy had to happen, but we have hope that he is in Heaven. There is a cause to celebrate because death is not the end for us. I was encouraged from just reading the book, Heaven is For Real, which helped me picture what Heaven might be like instead of some far off place in puffy clouds. Even though we have not had to bury our own child just yet, we've had to make some of the preparations and have long been mourning the loss of our "normal" parenthood and what is to come, so we've been happy to talk to them. It's been great to share in different emotions and also learn from them. They are amazing people and we look forward to continuing our friendship with them. Another great piece of their story is that their son was able to save the life of a one month old baby girl through the donation of his heart! What an amazing miracle and Mother's Day gift for that family!!!

We also found out that our best friends who are expecting their second boy (20 weeks along) have discovered their baby, Joshua, has a bump on his head called an encephalocele. An encephalocele (in-sef-a-luh-seal) is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain can protrude into a sac-like formation, or "bump". The really crappy thing about this is they just have to wait as the baby grows to see how this bump behaves. Obviously, the smaller the better, and surgery is most definitely an option, but only time will tell. The waiting and not knowing can be torturous so please pray for this family if you feel led to do so.

Saturday night, our nurse came over to "babysit" while Kyle and I were able to go to a first showing of a documentary from an organization called Give Us Names. A good friend of ours from college and his roommates have been working on this project for sometime. They've been searching for a way to help all of the injustice they've seen throughout various mission trips and other adventures. Columbia has been their primary focus - finding a way to bring awareness and help to the farmers who have been displaced. You'd think their displacement is from the wars and violence, but it's actually due to the careless fumigations that the US has been doing for years in a lame attempt to control the growth of the cocoa plant that cocaine is made from. It was a great film and very inspiring. They are looking to do showings on a "home tour" where you can host 15-25 people at your house to watch the film together and ask questions about the organization. There will be more large scale viewings in the future. If you're interested, check out their website and how you can be involved!

Mother's Day. It was simply amazing. After I had gotten home from taking pictures in the NICU Thursday, needless to say, my eyes were red and puffy from the tears that fell on the way home. When I walked in the door, Nurse Natalie said I had a delivery of flowers. I walked into the room to find an amazing huge tropical display that could only be from my Dad and Sandy. It was the perfect pick-me-up. The next day, I went through the pictures I had taken of the family and little boy to edit for the memorial and found some more tears to shed. My mother-in-law dropped off a geranium on my front porch in a beautiful lavender color which was another great way to lift my spirits. Sunday, Kyle went to the afternoon service while I stayed home to get ready for the day and get Skylar ready for a bath. My mom dropped by with a cute little planter that is so lovely on our front porch table. Kyle and I were able to bathe Skylar together and as we finished, a news crew showed up at our house! A friend came over to be interviewed and brought me the most beautiful lavender orchids!!! After all, Skylar is my little orchid. Kyle's present to me was a painting of flowers done by a friend of ours from college and he did an amazing job of making me feel loved and appreciated. I've been so spoiled this year and felt very loved by many! Thank you!!!

CBS Atlanta did a sweet story on the 10K For Skylar and our family in general. It was a great Mother's Day gift and aired that night at 11pm (and supposedly the next morning). I was so happy to get some news coverage to raise awareness for SMA. If you're interested, you can watch the video here. ***If you're running the race, please make sure you register online on the official race website, but also fill out the contact form so we know who is on "Team Skylar" and include your shirt size so you can get a special jersey. If you can't run, but want to get involved, hold onto your money because we're hoping to sell the shirts with our special Skylar logo to be revealed after the race. The runners get the sneak peek :)

I also found out that I was the winner of the Gwendolyn Strong Foundation Mother's Day contest and won a ton of goodies that I am looking forward to getting! Pictures will be posted as soon as I get the package since there are things for Skylar in there as well - super excited! Not as cool as Nurse Natalie though who found $10 in a wal-mart parking lot, turned around and bought a lottery ticket with it and won $10,000!!! CRAZY!!! Too bad 31% went to taxes...

For all of you Mothers out there who have lost children, my heart goes out to you. I know Mother's day can't be easy for you and I dread the day I no longer have my little girl to celebrate with me. I have prayed for you and hope you can find peace and reason to celebrate.

In other news, we had our first office visit with Dr. Brooks (pulmonologist) this week. It was AMAZING!!! I could not believe the difference in care we received and the support we felt. It's so nice to have someone in your corner ready to fight with you. We are just so grateful for our new doctor and are excited and hopeful for the care we'll get. We've had some drama with the Trilogy bi-pap I mentioned before. Apria, who told me they could get the machine no problem, has since gone back on their word and was just horrible to deal with. The good news is that after calling a bunch of different providers, Hi-Tech (who just services adults) was able to refer me to PSA who is going to work with our doctor to get us the trilogy! They've been fabulous! It should take 4 weeks and we'll have to check in the hospital overnight to get it, but it should be worth it!

As you can see, we've been overwhelmed with recent events. Skylar has been stable and pretty happy. We're working on her diet and equipment over the next month. Stay tuned. My goal is to post another update after the weekend - short and sweet with pictures :) Peace.