24 April 2011
Oh what an Easter Morning we had. I don't know what made me do it, but I chose this morning to retire Kira's old worn out boots. Now you have to know Kira to appreciate how this might have gone over. Clothes are a huge issue to her and not because she is some huge Fashionista but rather the familiar and comfy is a must for her. It is my daily battle (if not it has been a good day). Whether it's convincing her that she already wore her favorite pants twice this week so she needs to pick another pair, or getting her to choose a longer shirt because her plumber crack is showing and she refuses to pull her pants up all the way to her waist we go toe to toe almost every day. It took her a while to accept her little brown boots, she had a favorite pair of shoes already, and like I said-change is hard for her. But we finally broke through that and she hasn't looked back since. But as I looked at those ragged old boots yesterday I decided that it was time to "Out With the Old and in With the New" to celebrate Easter. I couldn't get her in the Easter dress, she opted for her knit regular. SO I went for it, I showed her the brown little flats that she would be wearing for the day and I took her little brown boots and put them where she would never find them. I knew the moment that I did it that I could never look back. "Say what you mean and mean what you say" is the motto to live by when you have a child with PWS. I had to move forward even if I hadn't prepared her by telling her a week in advance that there would be a change. Even if I hadn't pulled out her new brown shoes and introduced them to her over and over before I had the expectation of her trying them on, I had to stay the course, and pay for it dearly. She cried, she bartered, she begged for those boots. She pulled out all the stops-the new shoes were too small they hurt her feet-(they were a on the big size) Before I knew it she was on the floor kicking and screaming and telling me that I was the meanest mom ever. I made her sad, I made her mad and cry all in one moment. It hurt, but if there is one thing that I have learned it is that once you start the battle you have to finish. . . I was just not sure how I would finish this one. I mean the little brown boots weren't that bad, they had served her well. She never zipped them all the way up-it's all about the comfy factor. But she wore them to school and church every day. They trumped through the snow, on and off the bus, from life-skills to kindergarten and back again, they were like the little friend always by her side. How could I have done this to her? and on Easter-the day we celebrate the Resurrection. It's such a beautiful day- it means so much to me. One day Kira's tiny little PWS body will be made perfect because he loved us that much. I am so grateful for that offering. So in that dark moment when I didn't have an answer I turned to him. I prayed in that moment that Kira's heart would be softened and that she would put on her new brown shoes so that we could go to church and celebrate His life, and in that tiny moment he showed me that he loves me. I know it was so small. It was just shoes, it was just one battle, it was just one Sunday. But I was so grateful as she put her brown flats on. In that moment I knew that my Savior loves me, he knows my pain and sorrow no matter how small and trivial they might seem.
I learned a lot from those little brown boots today, thank you little brown boots, you are amazing. ...but you are still going away!
12 March 2011
But in that time I know that I was lifted up by something bigger than myself. I remember distinctly the song "You Raise Me Up" coming on the radio as I prayed for the strength to make it. I was on my way for an 1 1/2 hour drive to the unknown, but my body was sustained the pain was nothing compared to the lump that was in my chest, not knowing what was wrong.
It didn't take long to get settled into our little cubby, there is such sadness in a NICU, tiny people struggling for life and scared parents clinging to hope. Straight across from us was baby Fralia, she was born with her intestines outside of her body-her parents had been there for 2 months. How do you keep going like that? There were also the forgottens, so many little babies with no one there to sit by their side. That was hard to swallow-how do you fight, alone so small and frail?
We did this for 2 1/2 weeks. That was enough for me. It was on day 11 that we got our answer. Call it luck-I don't know. The nurse was away from our station and yet another Specialist had come around to see if she could tell us what was wrong. A neuromuscular specialist, she was looking for signs that Kira had muscular dystrophy or something like it. She assured us that this was not the case-"but I might have her tested for Prader-Willi Syndrom" she blurted as she walked away. What was that? No one else there to write it down-or tell us what it was. Richard and I rushed down to the 3rd floor where the parent public computer access was. I'm not sure that we should have typed in the search. The lump in my throat grew ten sizes that moment as I read the clinical signs of PWS. In infancy, low muscle tone,small hands and feet, failure to thrive, thermo-regulatory problems, non-reflexive. It all sounded so familiar and then there was more-Later people with PWS have cognitive delays, low IQ's, Autistic tendencies and an insatiable appetite that can lead them to literally eat themselves to death. The lump was so big that I couldn't swallow. I was awake again all night. We didn't have a diagnosis, but I knew. Even with the assurances that PWS was a 1 in 15,000 live birth disorder and the chances that this was it were small, I knew. So by the time the affirmative came, a DNA test came back showing that Chromosome 15 had a deletion in it. . . a tiny deletion that would change our world forever,the lump had had time to subside. I knew in that moment that I had to find the strength to pull it all together and change.
It was a lot scarier in those moments than life has played out. We were lucky to get the diagnosis early. We know what we are in for. It's almost like getting a manual to take home with your baby. You know what their weaknesses are probably going to be and you change your perspective. In a lot of respects Kira is easier than Reno-who knows what he's going to do or be next. So now we live with PWS. Food has become the nemesis, we have to lock it away, and beat it back at every turn, but we are mostly winning the battle. Kira is amazing-she is truly the sunshine in an otherwise cloudy life. It's amazing how she can make the world smile. She's now 5 almost 6, and while the details of those days are little hazy, they will always live stamped on my soul. It is who I am, the mom of Reno(8) and Kira (5 1/2 PWS) and better for it.
It started here 10 1/2 years ago. I had big dreams and plans of a nearly perfect life with nearly perfect kids (5 or so) with a nearly perfect home and nearly enough time to do all the things that bring me joy. But here I am 10 1/2 years later with a much different journey. A journey that is a lot harder than I thought that it would be. Some days it's so worth it, others I struggle to find the optimism. I thought that maybe putting it out there-all of it, the good with the bad- would help to make this climb more successful. So whether any one else sees this or not, it's me and that's all that I have to offer.