I realize I haven’t updated in a few weeks and I’m probably not going to fill in all the details, so today this may seem like a slightly unorganized rant but that’s kinda how my life feels right now.
Facebook has triggered this post tonight, I think I need to take a break from social media for a while. My media feeds are full of pictures of babies and pregnancies and I’m just not in a place where I can look at those updates and feel anything other then self pitty and resentment. I know, it sounds so horrible to say that. But to see pictures of all these other babies who are Fosters age and younger, growing and developing as they should, sitting up and rolling over, crawling and interacting joyfully with their sibling… It’s not that I don’t think all these other families deserve it, it’s just that I think that I deserve it too and Foster and Clayton and Brett.
I was so excited to have these two adorable little boys, only 18 months apart. They were supposed to be best friends and look like little twins chasing each other around. And now our doctors think not only that Foster may never walk or develop mentally, they aren’t even sure if he’ll live or for how long. I just feel like so much has been stolen from all of us and especially from little Foster. I see pictures of all these other families on trips vacationing with their beautiful happy healthy babies and I so want that for us. I want to be living freely with my children not sitting in meeting rooms at the hospital talking about resuscitation orders. I can’t lose Foster, I can’t.
He may not be developing but I can hold him in my arms. He’s the most adorable little boy. His precious face and huge eyes have stolen my heart. He’s squishy and warm and wonderful to cuddle. But he looks sad, and he’s had a hard life. When I arrived at the hospital today he had a new I.V. in the side of his head. The one in his arm had fallen out, as they seem to every four days or so. He had a bruise in the middle of his head from a failed attempt at another I.V. along with a spot in his arm and on his hand. Foster doesn’t even flinch anymore when the put needles in him, he’s so used to it.
He has periods when his heart will start racing at 230 beats per minute but he otherwise looks content and is resting. One of the nurses suggested he might be upset. She said “I know he doesn’t cry but if a baby his age were really worked up it wouldn’t be unusual for his heart to get up to the 200’s.” Since then, I have been picking him up and rocking him every time I see his heart over 190. It almost always drops down to a reasonable resting rate quickly. This is my way of knowing that Foster knows when he’s in Mommy’s arms and that he loves me.
I love him to pieces, I can stare at his little face all day long. He’s wonderful and adorable. And yet at the same time, seeing a status on Facebook like “Six months old and already crawling” with a picture of a happy laughing baby is gut wrenching. On the other hand, I also saw a quote on Facebook today that I actually took to heart and wrote down, so I guess social media has its pros and cons. The quote (if you’re wondering) was posted by my friend Ciara “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.’ ”
I was sent a message today asking if Foster was still tube fed and I didn’t respond because I didn’t know how to answer. Having Foster work his way back to eating orally used to be a big deal to me. But I have a very sick baby and at the moment how he is fed is irrelevant. Just keep him alive. I know that people are starting to become frustrated with me or worried because I haven’t returned or answered phone calls. My Mom called tonight sounding worried because one of my friends had contacted her, worried, because she hadn’t heard from me. The truth is that when I see someone calling, I really don’t know what to say. I don’t want to talk about it, I really don’t. And at the same time, I have lived the majority of the last 5 months in a hospital room with the rest of my life on hold so I wont have anything else to talk about. Then again, I don’t want you to stop calling or caring because I need your support. I don’t know what I want.
Here’s what I want, I want our doctors to find out what’s causing Foster’s seizures, I want them to stop, I want to never see a blue baby again, I want his brain to heal and for him to grow into a happy healthy child. And, I want to go to Greece with my Husband.
If there is a silver lining to all of this, it would be the amount of love that we have experienced from all of you. I can’t even recall all of the acts of kindness that we have received since this journey began. People that I would never expect to even think about me have gone out of their way to send gifts and cards and care packages. I have been blown away from the kindness we have witnessed. Friends now feel like family and have been so supportive in terms of caring for Clayton and spending long hours visiting and bringing wonderful meals to the hospital. And Foster has received some wonderful cuddles as well. You would think that going through an experience like this would make you want to live closer to home and family (with ours being across the country.) We’ve been here for years now but I constantly think about how this experience has really made this finally feel like home because it’s shown us how many people care about us in our new home.