A year ago, today, my baby had a stroke. And, in those first crushing moments alone holding a baby who was not responding to my pleads to come back to me, I feared I'd never have my
whole child again in this life. But, as we all know, this year has proven just how loving and merciful our Heavenly Father is, because he gave to our family a miracle beyond anything I expected.
These are randoms thoughts of the past events......this is a journal entry, so it's long, but I need this.
It was late at night, and I was alone. When I heard Carter cry out, there's was no other thought in my mind than going to change and feed my little guy. And, then I held him. I found him mentally gone. I did all I could not to fall completely apart. But, I was crying -a lot- and begging Carter and the Lord to give me MY Carter back. I remember saying, "Please baby, please look at mama." But, he responded only with blank looks and a seizure. I called Joe and my mom. I wanted them to physically fly through the phone and see what I was seeing and tell me what I could do to reverse this. I was grateful that my younger sister lived close enough get to my house within "seconds" (it seemed so fast to me, because everything else had slowed down.) I swear my heart was either completely stopped or racing out of control. (There was a small window where Carter seemed a little more aware, and I tried so get him to reach out for a cup. He looked at it and with his left arm being the arm closest to the cup, he didn't even try to grab it. That scared me, but I didn't know what it meant.)
I am grateful that in times like these -emergencies involving my kids- I am usually pretty calm, and focused. I hide most my worry and fear pretty well for their sakes, as well as for the fact that I don't want to be one of those blubbing moms that doctors are annoyed at or that people think are over reacting. I want to hold it together so I can communicate as best as I can, and get my children the exact help they need.
On the drive to the ER, I actually felt a second of peace when the thought "it was a seizure" came back to my mind. I felt a little better continually thinking, "I know all about seizures; seizures aren't scary; I can handle seizures. He's going to be fine. He's going to be fine." But, then over the course of, too many, hours he had so many seizures, and I wasn't so sure I could handle it. Joe was headed home.
I remember when the EEG guy came in to do his test -checking his brain waves. I remember seeing the sheet of scribbles printing out as I sat there holding Carter. I remember knowing something was not right. Mind you, I can't read an EEG, and I know they aren't supposed to look rhythmic like a heart monitor, but, I saw no rhyme or reason to anything on that sheet. There was no consistency at all. I asked the guy what he thought about what he saw, and I got the answer I feared I would. "Ya know, I'm just the tech, so the doctor will have to tell you what he sees." That answer told me things were really wrong. (No tech will give or hint at bad news, but they will reassure when things aren't looking weird.) I tried to convince myself that it was still not going to be a big deal -just seizures, maybe epilepsy, which "I could handle".
I remember after 13 hours, finally getting a shower but crying the whole time, begging Heavenly Father to let me keep Carter. I remember getting to finally feed him after his first MRI, and feeling like things were going to be fine -he was nursing and he'd be fine. Plus, Joe was there and I felt the load equally shared with another person for once.
I remember sitting in the hospital room visiting with nurses and checking in on the boys who were with grandma and aunt Nattie. I remember my sister texting me about funny things the boys were doing during the movie. I was actually laughing and having a normal moment as the phone rang in our room. Carter had another seizure in Joe's arms, and the nurses surrounded them to time and watch. I was oblivious to the ringing, until another nurse came in and said, "Your phone is ringing." We knew it'd be the MRI results.
WHO in their wildest thoughts, would ever think that a doctor would tell you, "The results from your baby's MRI shows he had a stroke" ? I couldn't really understand what she meant, or really what she had said. I do not remember anything she said after that. I'm sure she mentioned moving him to SLC, but who knows. I was completely turned off, and just knew I had to tell Joe. I knew he wouldn't know what any of this meant either. For the next several hours my mind flashed pictures of a teenager, with thin limbs and a supported head sitting in a wheelchair. I pictured me and Joe as older parents carrying our teenager, and feeding him. This was my only idea of "stroke". However, I remember not feeling sorry for myself, or for us as parents, but just so sad for Carter and the thought of him stuck in a helpless body.
I remember my sweet bishop giving me a temple recommend interview, and a much needed blessing. In it, I was promised peace. I remember demanding, begging the Lord to start the peace coming imediately afterwards. I remember the peace coming. Although, it wasn't an "everything is going to be okay" kind of peace, it was more a "you CAN get through this" kind of peace. I knew I could do what I had to do.
I remember the drive to the airport and loading onto a tiny plane with my tiny baby. I remember picturing the actual hands of the Lord carrying our plane to Salt Lake. I remember thinking, He literally holds our lives in His hands, and I know we are safe. But, mostly I remember how physically tired I was, and how when I tried to sleep on the plane, I couldn't. I remember finding my older brother and sister in Carter's room when we got to SLC. I remember feeling so tired and emotionally drained. All I could do was eat and have small talk. I couldn't cry anymore; I couldn't release.
I remember telling and retelling the story of "how I found him", and "how he responded", and every little detail to every single doctor, nurse and family member. I remember feeling guilty when I realized it was coming out as easily as if I were telling them what I had had for lunch. I remember feeling guilty for a lot of things. I remember missing my older boys. I remember being so shut off emotionally, that I felt I was faking it all. I do remember being very composed for every important conversation with each specialist. I remember questions coming to mind, out of nowhere, that made me understand things clearer. I was most grateful for that gift.
I remember them telling us his stroke had happened within the last 24 hours, which meant, it happened exactly when he cried out. I remember the second MRI and them telling us he had had two smaller strokes that happened sometime between the first and second MRI.
I remember standing by Carter's bed for two hours while he had seizure after seizure. I had less then three hours of sleep after being awake for 24. I remember wanting to sit so badly, but not wanting to leave him for a second. I remember just always being tired. I remember not being able to hold him on days he had to have test -I didn't want him to think he could nurse when he wasn't able to eat. I felt like it would be a cruel teasing for a hungry baby. I hated not being able to feed my baby. I wanted him every second.
I remember seeing his first two MRIs and seeing the huge section of black. I remember holding in the fear and telling myself tears weren't an option -"just find out what this means", was all I would allow myself think. I most appreciated the amazing neurologist and her willingness to talk to me for two hours. I remember her telling me he'd walk, and that he most likely wouldn't have cerebral palsy. The picture of the helpless teenager in a wheel chair left my mind, but uncertainty was still present. I remember her reassuring me, and talking to me about how amazing she thought he was already doing and all the good signs she was seeing.
I remember all the friends that called. I remember the friends that cried for me, when I couldn't cry for myself. I remember the family and friends who traveled (as far as Texas) to see us, and who never ceased in their service and prayers. I enjoyed the physical company of my best friend as well as our family. I remember finally reading the face book comments and realizing just how many temples my Carter's name was in and being prayed over. I remember knowing that things were taken care of in every area of my life. I remember how loved I felt. I remember wondering if I was showing my gratitude enough to everyone -knowing that I was so sleep deprived and so not thinking clearly. I remember wondering, "Did I say 'Thank you' to him/her?" and, "Did I say it enough?"
I remember the days when Carter was finally himself -only sleeper. I remember the fear and excitement I felt knowing we were going home and worrying if he would seize on me or have another stroke -even though both of those things were not likely. What would I do?
I remember sleeping in my bed again and feeling like we'd actually made it through the worst thing imaginable. And, I had.
I see my baby Carter now, who is far from a baby. He's big and smart and funny. He's so physical and a completely typical kid. And, every miracle that could have happened for him has happened. No one would ever know he's suffered any kind of brain trauma. He's reached ever milestone on time. He's just blown us away with his development. Soon we will visit his neurologist again, and get to see another MRI. This one will show us the lasting damage (the actually dead area). We let the neurologist add Carter to a Stroke Study, so we have been privileged to have a lot of information and special care for him that we wouldn't otherwise have had. Plus, his information will be available to doctors and anyone who wondering about infant stroke. I love that his information could be helpful to other parents who are going through the same thing. Maybe it could bring them peace of mind.
I asked, for a long time, what the purpose of it all was. I found the answer for me. I'm not sure what the answer is for Joe or Carter, or anyone else. But, I am grateful for the answer to my prayers. I am grateful for the support we received. I am grateful for how far things have come in a year. I don't know if I'll make this anniversary a big one every year, or if I'll simply just attend the temple on this day as a token of gratitude. I may just spend it cuddling Carter. We'll see. :) I am just grateful we have made it this far. And, not just "made it" but actually SOARED through this year. I can't express everything I feel -both about the past, the review of this year, or of the bright future that will be because Carter is here. So, I will just end this, enormously long, post by saying, I know that my Heavenly Father loves me, watches over me and gives me everything I need, even when I don't know what I need. I thank Him everyday, for Carter and -though I don't thank him for the stroke per se- I thank Him for the trial that it was, and for all that it taught me and for all that it changed in my life for the better.
Kade recently had a big teeth overhaul. Awhile ago, he fell and bonked his chin pretty hard on a bench. His teeth clinked together and the result was a dead tooth. For many reasons, the dentist figured the best thing to do was just to remove the tooth....and, to fore go a hillbilly look, we removed both front teeth. (Having them both gone at the same time will also allow the new teeth to grow in easier/straighter.) So, he now has no front teeth. He was able to keep his teeth to turn over to the tooth fairy. Also, he had cavities in two molars that had reached deep enough that "caps" were the only way to fill them in. SO, he now has two "robot teeth." I hate the little silver things, but they're a means to an end. Having healthy mouths are more important than aesthetics. He did really well at the office and is totally his energetic self and not bothered by the missing teeth -however, when eating a pear today he stopped after a few bites and declared, "I need more teeth for this." :) He's just a hoot! And, I'm glad we're not worrying about teeth for awhile. Also, when I first brought him home, Joe was out walking with the other boys -I called him and they were on their way home. I asked Kade if he wanted anything "water, applesauce or a show." He simply answered, "I want my bother." Less than a second later, Ben walked in the door. It was very sweet. I am glad my boys love each other the way they do.
