Thursday, January 3, 2013

How are we?

We get that question a lot, "How are you doing?" We don't mind it and are glad that people care about us or are taking an interest in Johnny in order to ask us about him. It is a hard question to answer though. Sometimes we aren't sure ourselves how we are doing. It depends on the day and how many appointments we have had or need to schedule. It depends on how nursing is going. It depends on how many "feel good stories" we have read and how many "this is reality stories" we have read. Sometimes it depends on how available our support network is or how isolated we feel from each other or from family or friends. It's also a hard question to answer because we have found ourselves immediately evaluating how much the person already knows, how much it seems like they want to know, what background knowledge they have, how much we think they can handle, and how much we want to put of ourselves out there. Sometimes I find myself forgetting that strangers or mere acquaintances don't know about Johnny and really just want a general "We are doing great". It's hard because a lot of what people want to know, we don't know ourselves. We can give general answers to some questions, but we still don't know a lot about Johnny and what he will face later in life. We don't know anything about his cognitive abilities yet. We recognize that many people say he doesn't look a lot like he has Down syndrome, but that has no bearing on his cognition or physical we just have to say "We don't know...and won't know...for three the earliest." People want to know about his heart, which looks promising, but we still have to wait until March to have a clearer picture of what is going on in there. People want to know about his hearing, which for a number of frustrating reasons, we won't know about for a few more weeks. People assure us he can hear and sometimes I agree with them and sometimes I don't. I just don't know...and I hate to get my hopes up. People say, "What are the chances of him having hearing loss?" I have to respond that I am not a big fan of "What are the chances" and "Well your risk factor is only..." We have heard that before...

I do know that tiredness can set in quickly. Not because of his sleeping schedule (sleeping through the night for three weeks now, thank you very much), but because over the past six months there have been 3 weeks that I have not had doctor appointments and 14 of those weeks I have had two or more doctor appointments. Over the next three weeks I have one appointment a week for Johnny and will probably be meeting with his Occupational therapist at least twice. That is a lot of work...and a lot to keep up with...and report from one doctor to another...and to take in. For a lot of reasons I have to do a lot of these appointments by myself...which is a lot on my shoulders...while we have some incredibly nice providers and like their staff a's a lot of waiting in waiting rooms and observation rooms wondering what news we will get next. It's a lot of worse case scenarios floating through my head in the moments before the doctor comes in.

I do know that I have never had an easier baby. That if it wasn't for his doctor appointments and the nursing difficulties (another post on that another time) that I wouldn't really notice much of a difference with him being here. The transition from two to three has been almost seamless. He is just content. And for that I am so thankful. I know that I never thought I could love a boy like I love him. It was hard to imagine loving a boy like I love my girls, but he is so easy to love. It took over the moment I saw his face. It was even harder to imagine loving a chromosomally enhanced child. I knew that I would love Raptor in theory, that because Raptor was my child, because I was Raptor's mother that I would love and care for Raptor. I didn't know that it would be so easy, so instantaneous, that the moment I laid eyes on my son, that I would be proud. That I would feel proud of him and be so proud and honored to be his mommy. That I would feel so obligated to be anything he needed me to be. In that second that he was born it was like everything that was bad and negative about T21, washed away. That even though I knew we had a lot in front of us, all he needed was to hear my heart again, a few tear soaked kisses, and the reassurance that I would always love him because he was my son. And I needed it too, I needed to feel him, to hold his little body in my arms, and soak him in, almond shaped eyes and sandal gap and all. I needed to snuggle my face into his neck and smell his sweet baby scent and graze my fingers over the folds of his silky skin. The moment he was born, I became someone new, a mom in a different way than I was before. So in that way...we are doing really well, beyond words well.

We are working to find our place in this new world, this new club of "A Family of Someone with Special Needs". We are working to find that balance between standing back and standing up. We are working to find out when to advocate and when to smile and nod. We are working to learn when people are trying to be helpful and when they just don't know what to say. We are working to enjoy him for who he is and to also plan for the future when he may or may not need more from us. We are working to toe that line between information that is helpful, useful, and encouraging, and the information that hurts and cuts too deep. We are working on assessing when to intervene and when to pray.

Sometimes I cannot answer the question because I am not sure how I am doing myself. Most days I feel like a superhero mom, gracefully taking on a third baby with hardly a glitch, taking on that extra chromosome like a rockstar model mom without the bat of an eye, successfully managing all the appointments, errands, and child rearing while still having time to bake cookies for the neighbors and to pump milk for the milk bank. We say to ourselves that it is really good "this all happened to us"...we are definitely the right people to handle something as huge as this...we have the right balance of everything needed to raise a child with special needs...and look, we can be an example to everyone else of how wonderful it can be. Which is all fine. Sometimes though, out of nowhere, I will be hit with a huge dose of reality and be knocked off my pedestal back to earth where I probably belong. And it will come from the most unexpected places. We went to speak with the Down Syndrome Association of Houston recently and had one of these moments. We went in excited to see about programs for Johnny and our family and to learn about resources we could get for him to achieve greatness. In the course of our visit we both began to feel really overwhelmed...and really uncomfortable...and began to get sad. I had to hold it together until we were all back in the truck where I began to cry. There wasn't any one thing that was said, but it was a lot to take in at once. And some of the programs and resources aren't what I want for Johnny. I am so glad they are there, but it is so hard to see past the newborn he is now, much like all of his peers and look forward to who he may or may not be in 5, 10, 15, 20 years down the road. It is so easy for me to imagine having an exceptional, exceptional kid, but talking with DSAH, I had to face that this may not be the case. Sure I might be too optimistic right now, we might face a future very different from the one we want for ourselves and for Johnny, but it was too much to gulp it all in at once. Several times I looked at Johnny sitting in his carrier on the floor, comfortable and snoozing away, and I wanted to protest, "He isn't any different from the girls...we probably don't need all of this..." But we might. So days like that can be challenging. Sometimes the pain returns in times one would expect. Having to hold his struggling body, listening to him gasp for air to cry louder as they take x-rays of his chest. Speaking to him or hearing a loud noise and seeing that he has had no reaction and wondering if he can hear. Considering whether we may want a fourth child at some point and facing the question deep inside ourselves, would we want a chance to have another boy, one who might be "normal". Or would that hurt more and it would be easier to have a girl so there wouldn't be a comparison. And having to shake ourselves out of it knowing that, in the end, we would have glad hearts to just have another child. As we approach the point where we started "trying" for Johnny a year ago, it hurts to wonder if (even though it has nothing to do with anything we did or didn't do) if it is our fault...or as I have read more recently, if it is my fault. Most of the cases of T21 probably come from an extra chromosome made in egg production. We know that Johnny was meant for our lives, but sometimes these thoughts take over you and try to strangle you with sorrow. That maybe if we had just...waited... But then my heart stops and I become sadder still because I never, ever, for even an instant want to wish him away. I can never imagine him not being him and not being in our lives. Which leads to more heartbreak and hurt that I allowed myself to go that far down the path of regret.

These are some of the hills or mountains we are facing and have to work together to climb up and get over. It's challenging because we oftentimes cannot see the mountain before we are already in the process of climbing it. Life just places us on them. I fully expect there to be a constant flux of up and down throughout our lives. Pain and regret. Curiosity and denial. Joy and sadness. I hope mostly for acceptance. Not of T21 and what others say that should or shouldn't be, but acceptance of Johnny, for him accomplishing what he wants to accomplish and for him to meet his goals whether that be with ease or with struggles. And surely, at the end of the day, there may be more than one way to climb these mountains. I think we are determined to climb them our way. By using a combination of what has already been done and what is textbook along with what we just, instinctually feel, is right for us. That maybe along the way we use a handful of paths and equipment that have been used by dozens of others, but we also take risks and chances to forge a path that is distinctly our own. I don't think it's going to be easy, but Matt and I often forgo what is easy for what feels right. One of our dear friends told us this summer when talking about our diagnosis that God doesn't give you good things or bad things. He gives you things. It is up to us to make them good or bad.

Keeping that in mind, God has given us this mountain range and we will fight to make it good.

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