Wow. I don't know where to begin...
I guess I'll start with Skylar since that is what most of you care most about and are interested in reading about - after all, this blog is dedicated to her and keeping you updated with her life :) with my occasional ramblings of inner thoughts!
Skylar is doing fairly well - no more scary drops out of no where and no more blood - YAY! I think mainly because I have been suctioning her much more frequently and catching it as soon as I can so I don't have to go down her nose if at all possible. If I hear her try to swallow, I suction. If she coughs, I suction. If she gives me a crinkle brow and squirmy face, I suction... then check her diaper, lol. Usually her oxygen levels will stay in the upper 90s during the day and if they drop to the mid or lower 90s, I suction and do some form of breathing treatment until I get a big chunk of mucous out to prevent any major drops later. So far so good. Our chiropractor has been really fabulous (we haven't been since before our hospital visit) and he actually came out to our house today because he was concerned for Skylar and wanted to make sure she was okay. We haven't been out of the house since I left the in-laws because traveling is such a hassle, not to mention I am by myself and it's extremely overwhelming if she drops while I am driving or with lugging all of the equipment, car bed, and other such things that make it more difficult than "normal." To think I thought a diaper bag was difficult the first month we had her... ha! I promise I'll try to post pictures soon of her equipment and nursery now so you can have a better idea of the things I talk about.
Anyway, I am hoping a van and her special stroller will be much better and make us more mobile. I feel like her machines have us tied to the house right now, but honestly I am okay with that because it's less chance of her catching the latest virus or bacterial infection. Thankfully people are still bringing us dinner every Tuesday, Thursday and Sunday so I get some interaction with the outside world. I really look forward to dinner days and meeting new people or seeing old friends! With that said, if you're in the area and healthy, feel free to call me and swing by :) We are usually up for visitors. Tonight, we really had a great time with some friends from church - they brought their little girl who was born just a week before Skylar and I think they became friends... that is, until Skylar got scared by her squeals... it was cute. A lot of people write me messages or call me and tell me how blown away they are by my strength and faith. I definitely have to give God all of the glory there and also admit how blown away I am by peoples generosity and thoughtfulness. The family tonight was a great example - they brought us flowers, a toy for Skylar, and a wonderful Mother's Day card for me, a donation for our family, in addition to dinner. It's such a gift to see God working through others and to see how Skylar has mobilized the hands and feet of Christ. It truly brightened up our day and the flowers are a beautiful addition to our living room. I am not sure what kind they are, but they just make me think of peace and comfort. I will smile every time I look at them.
Okay, back to the stroller speaking of amazing generosity. I spoke with Ashley Manross tonight and their family wants to give us their little boy's Jazz EasyS stroller that has the van tie downs and a few accessories (usually retails around $3,000) and I almost cried. We feel so extremely blessed by the Manross family and I hate the fact that it's because they no longer have their little boy to use the stuff that they're giving us. What an incredible family... talk about strength. And since I mentioned strength, the Miller family (another SMA family we've met that I've mentioned before) comes to mind. They also gave us some really helpful contact information this week and are working on getting us some back-up equipment in case one of our machines fails since insurance won't cover multiples. We'll be needing to purchase a generator too in case the power goes out because only the feeding pump and suction machine run on battery... Crazy things you would never think of right?! Both families have been extremely helpful with giving us information, supplies, equipment, an ear to listen and good advice going forward. They've helped us think of things we would've never come up with on our own. At least we have plenty of oxygen for whatever situation, lol.
So on a more serious note, thinking about Mother's Day has been really hard. I know it's coming, I know it's going to be emotional, and I know I will treasure that day forever (hopefully). I keep praying to God for a miracle, but then I think, why me? Why Skylar? We don't deserve it any more than anyone else. I hope He finds favor on our family and chooses to heal her, but my eyes have truly been opened to the suffering of this world. I mean, in college, through mission trips to other countries, I have seen orphans, struggling families, and other heart breaking situations (and I really do have compassion for them), but you don't really know something until you experience it. I now know what it is like to truly suffer and have been given a glimpse of how huge a sacrifice Jesus' death was... When Skylar was first diagnosed, I felt like my heart was torn out and shredded to a million pieces and then put back together just enough to keep beating. My heart still aches every day. I know there are thousands and thousands of other SMA children and families suffering out there. I know there are other completely horrific diseases taking the lives of thousands and thousands each day. There are so many people suffering, He can't heal them all - that's what Heaven is for. I know the financial burden and emotional burden strains families to the point of bankruptcy or divorce, which is something we fight against on a daily basis. So why us? Why should we get the miracle? We already have received one miracle in the Jones family... (for those of you who don't know, my husband was struck by lightening when he was 10 years old on mother's day and wasn't expected to live) So is that it? I have been struggling to remind myself that there is no trick or ritual or deed that can get me that miracle. I keep thinking, "If only I could pray the right things... say the right words... touch her the right way... believe more... have more trust/faith..." the list goes on... that maybe then, Skylar would be healed. Of course I know deep down that is a lie, but my mind still goes there. I know that it is up to God. I plead, I cry, and I pray that God would choose Skylar to be healed. I also know so many other families who have done the same - and some have lost multiple children to SMA... where was their miracle? I wish I understood. I hope someday God will give us the insight into why things happen the way they do.
I know God gave me the perfect daughter. At first, I felt like I got robbed - how come I have such a short time with her?! Doesn't God know that I have all of the love in the world to give and a whole lifetime to give it?! I felt like a bratty little kid, "It's not fair!" but I also know that life is not fair and try to be positive no matter what the circumstances are. Believe it or not, it could be worse! So on the bright side, she can't resist me and squirm when I want to hug her and love her and cuddle with her. Skylar doesn't cry hardly anymore, and even when she did, it was so soft and cute that it never got on my nerves. She never spit up, screamed, threw a fit, or anything like that. She'll just lay there in her crib, content with looking around until I come and play with her or sit with her laying on my lap in the rocking chair. She's so alert and smart. She loves animated films (we watched Cars and Ice Age together this week and she loved it - Finding Nemo is next - after all, she is my little nemo)! She puts up with all of the crap that I am forced to do to her in order to keep her here - like deep suctioning, the torturous cough assist, whacking her back to knock the mucous loose, and stuff like that. Skylar tolerates things amazingly well for a little baby. She made it through surgery like a champ and brings smiles to all of the nurses and doctors in the hospital. She brings joy to those who meet her and I feel so blessed to be her mother. I am so honored that God chose me to raise her. She's so perfect that I know she'll make a great little angel. Oh how I long for her to wrap her little arms around my neck, for her to say the word "mommy" and hear her sweet little voice, for her to sit up and look around, to share a five guys burger with her or a chick-fil-a sandwich (two items she's quite familiar with since she was growing in my belly :) I would love to play with her in the pool, take her out to the park and let her run around with other kids, and the list goes on. I had a good cry tonight thinking about it all. It almost broke my heart earlier when Kyle got home and came into the nursery when I had Skylar laying on my lap... he reached out and grabbed her little hand and said, "I'm gonna miss you Skylar" and just looked into her bright eyes for a couple minutes. Of course, my eyes filled with tears. It was so sweet yet so sad. I stared into her bright eyes too and just admired her beauty and the amazing little girl God has given us. I really hope I get to see her grow up.
It's been a challenge to be completely selfless. "Daily I struggle to die to myself so that I might truly live!" struck me when I first read it on a friend's blog and it still does today. I can definitely see how easy it is for families fall apart during tough times. We are both working our butts off to make this work and it's easy to feel unappreciated and become bitter. I was reminded this week through another friend's monthly update "Blessed are the poor in spirit. If you set out to live the teachings of Jesus, you have already failed dramatically; you will surely not be able to. But if you agree with God that you are not able to do this, you might stumble into the beginning of everything that is possible..." Thank God.
Well, this is turning into a novel (it was supposed to be a short update, hahaha) and the sleeves on my t-shirt are still kind of damp because I didn't have any tissues around so I am going to get ready for bed. I am already 4 hours late getting to sleep and actually have to look somewhat presentable tomorrow going to the GI-doctor for Skylar's check up. Fresh air! Oh yeah - if you've made it this far and feel led to pray for us, one minor thing to add to the list is that Skylar's g-tube peg has irritated and broken down the skin right around it. We're treating it and padding it to prevent further infection, but it still looks uncomfortable for now. It's not like she needs another thing to deal with, ya know? Or me for that matter, lol. It's hard enough getting her feeds, treatments, diapers, therapy, massage, baths and other stuff taken care of, let alone wound care. As always, thanks for reading. Peace to you.