When I decided that I was going to start blogging about our family and our life with BWS, I told myself that I wanted to be authentic. I wanted to show the good times, the tough times, the sad times, the angry times, and any other kind of “times” there may be along our story. When I made that decision, I knew that there would be times that people who read what I wrote may not always walk away with a warm and fuzzy feeling. They won’t always walk away with feelings of hope or happiness. They may actually not like what I write at all, but that is a promise I made to myself. It is unrealistic to think that life doesn’t throw you stressful times or times that make you so angry with despair you can’t even think straight. Well, buckle up everyone. This is going to be one of those times. This is going to be one of those times that you may not see hope in what I write. You may not walk away with a great feeling. But that is OKAY! I know that so many people have days where they just want to scream and yell, “When is our family going to get an FU**ING break!” If you have those feelings you’re not alone.
Three years ago, before Owen was born and Michael Jr was almost 2, I needed major back surgery. To make a long story short, I needed a spinal fusion and discectomy at the age of 26 because I could not get out of my bed and walk. Fast forward three years, 8 different types of injections, and a BWS baby later, I need another back surgery at the ripe old age of 29. (You sense my sarcasm there?) I really am wondering who has a voodoo doll of me and keeps sticking pins in my spine! Why is this happening to me again? I thought I was overwhelmed the first time with a 2 year old! How the hell am I supposed to go through this again with two children, not to mention a child who is extremely large at such a young age? My family keeps telling me not to worry, that everything is going to work out. I’m sorry, but not worrying right now is not an option. How will we pay our bills with me out of work? Will I wake up still in pain like last time? Will I make a full recovery and be done with surgery for good? How can I expect my husband to pick up the slack yet again? How can I expect him to work and pick up the financial burden, while at the same time be available to help me at home? Of all the worries I do have, my biggest one is Owen. My doctor was explicitly clear with me that I can not lift anything over 9 pounds for AT LEAST 6 weeks, and even after that I need to add weight gradually. Well that’s a problem, especially since Owen was never 9 pounds outside the womb. He was 12 pounds at birth, he was legitimately the size of a toddler. Owen is probably close to 35 pounds at this point and he has just turned one. I feel like the poor kid is constantly getting robbed. He has never been the size of a normal baby so he never seems to be treated like one.
Normally, one year olds are held by their mothers. Their snuggled and rocked and sung to sleep. Their bounced if they need to be soothed. Their gently lifted in their mother’s arms and placed in their cribs to sleep. All of these things he deserves, even though he doesn’t seem to be the age he is. He deserves for his mother to be able to be the one to pick him up whenever he needs to be held. Yet, come May 29, I am not going to be able to do that for him. In fact, I can barely do it now. I feel so incredibly helpless. I am not going to be able to be alone with my own children for weeks or even months. I am going to have to rely on other people to help me care for them, which is tearing me apart. I can manage having a physical problem that affects myself, but when it trickles down to my family and affects what they need, that is when I get angry. It’s already not fair that Owen has to go through everything he does. It’s not fair that people mistake his age and think he is so much older than he is. You should see the looks I sometimes get in public from people because I am holding him. I can see exactly what their thinking because their not even trying to hide it. “Why is that mother holding and babying a 3 year old?” The ignorance of people is so exhausting.
Not only do I feel guilty that it will be months until I can lift and hold Owen myself, I have already had to be a different mother the past few months. I have had to tell my boys NO when they want to jump on me and wrestle like we usually do. They both want me to run and chase them around the house and I can’t do it. The disappointment on Michaels face eats me alive, and the confusion on Owen’s little face makes it even worse. He isn’t at the age where he can understand why his mommy is being so different. Why mommy won’t play like she usually does. The confusion on his face breaks my heart. Imagine the confusion he is going to have when he reaches for me and I can’t pick him up, when I have to say NO and have someone else do my job as a mother. And I don’t say job as if it’s a burden. My job as a mother is truly a gift.
My greatest accomplishment is not my career nor the degree I have obtained, or even the lives I have helped save at work. My greatest accomplishment is being a mother and I feel like that accomplishment is threatened right now. I know the kind of mother I am to my children and the kind I want to continue to be for them. Am I still going to be able to be that for them? Am I still going to be able to be what they need? Will I be able to give Owen everything he needs as the unknowns of his syndrome present themselves? God if you’re listening, please don’t take away the greatest gift you have given me. Please let me get through this and be the mother my children need and deserve, and while I wait to see if my prayers are answered, please forgive how incredibly angry I am that our family is going through this again…