Sunday, October 31, 2010

On Top of the Mountain

Shortly after Lauren was born, I started wishing that I could move my entire family to live in a rainforest, or the top of a mountain top, or into a small house in the middle of a rice field, or really anywhere where we could live alone in a our own bubble world, without expectations, judgement or stereotypes from society. Where Lauren could be Lauren, where she could lie around all day if she wanted to. Who cares if she couldn't sit up, who cares if she didn't want to sit up. Who cares if she wanted to lay there all day and just stare into the blue sky and white clouds. Milestones? What milestones? And what would be the rush to achieve them? We would live a carefree life, free of worries of "is she walking? is she talking? is she doing this, is she doing that?" The kids would play outside in the river or maybe they would be making igloos, and I wouldn't care about anything, just as long as they were happy. As long they were happy, as long as we were all happy, that would be all that matters.

Looking to get to this state of desired happiness has proved challenging for me at times. I've tried clearing my mind, focusing on the positives, reading self-help books (even a book entitled "The Happiness Project"...yes there really is a book entitled this and no it didn't help, well it was kind of boring so I stopped reading it), going out, talking with friends, reading blogs, not reading blogs, shopping, shopping and more shopping. Everyone else in the family is already there. Happy, go lucky, positive...those are the words I would use to describe a 3 year old, a 1 year old and Steve. I convinced myself that the only way I could be happy, would be to get away from everything....hence why living on the top of a mountain sounded so appealing. Unfortunately, I wasn't able to convince my darling husband that this was a good plan, so we've stayed put where we are and I've been on a quest for happiness back down here on earth.

This weekend I watched a few children coo and cuddle Lauren like she was the most awesome thing in this world. They didn't know about her medical background nor did they know that she has some undiagnosed vision and hearing issues or that she is delayed. They sat with her, spent time with her, tickled her, held her hands standing and tried walking with her. They talked to her like she understood what they were saying to her, they were in awe when she smiled at them, they were amazed that she could stand holding onto a couch. They asked the innocent question, "can she walk?" I answer "no". And they say "oh, ok" without a thought in their mind and go back to giving her their 100% attention. They touch and remark how tiny her feet are and how adorably cute she is. They tell me they love her, that she's so sweet. They think she is perfect. I felt like we were all on the mountain top.

And it was their interaction with her and my ability to finally "step back" and see the larger picture that hit a spot in my heart. She is perfect. On the mountain top she is perfect, so why can't she perfect down here on earth? Because we are surrounded by doctors and therapists who are treating her because something is "imperfect" about her. She is "imperfect" because the stupid milestone charts and baby books tell me so. She is "imperfect" because I constantly ask "when will she do that" or "why doesn't she do that". She is "imperfect" because of me. Because of my outlook, because of my worries, because of my desire for society's definition of perfection. She is "imperfect" because I keep looking at her in a way that is different when I look at Kayla. And could all of this, this view of Lauren being "imperfect" be at the root for my happiness quest?

There have been so many days that I dream about living on that mountain top. There have been so many days I would just close my eyes and wish that I would wake up the next morning on the top of the mountain, family and happiness hand in hand. But yesterday I realized, while watching those children enjoy Lauren and giving her their unconditional love and attention, that happiness is right here in front of me. I don't need to go to the mountain top to find it. Its right here before my eyes.

So today, I just enjoyed Lauren for who she is. No observations, no mental notes to self, no flashbacks to where she was developmentally a week ago, a month ago, 3 months ago....No stupid therapies. You don't want to crawl, then don't. You don't want to talk, then don't. You don't want to look at me or listen to me, then don't. I just enjoyed her. Played with her, made her smile. And you know what? I felt like I was on the mountain top.

Wednesday, October 20, 2010

1 week post op

Well its been a week since Lauren's palate surgery. She is pretty much back to her normal self meaning no naps, wanting to be held, and curiously moving slowly around the house (with the arm braces). But she refuses to drink any milk!! I don't know if her mouth is still swollen from the surgery or if its teething or a milk strike, but I am going out of my mind figuring out how to get her back onto the bottle. She'll eat the soft foods, but when we bring out the bottle, she shuts her lips tight. The grandparents have now resorted to spoon feeding her milk which takes forever just to get 1-2 oz in her and Steve and I are syringing milk into her mouth nightly while one of us pins her down. She bats at the bottle, shakes her head furiously, spits the milk in our face and puts up a huge fight. By the end of it, she is a ball of sweat and we have milk everywhere. Tonight we finally just gave up and put her down for bed with no milk. She's lost alot of weight since the surgery which is another reason why I'm stressed. She has a big belly, but her arms and legs are so skinny now, it looks awful.

Other than the milk issues, Lauren is doing well. The ear tubes don't seem to have helped with her hearing (or speech), so we'll be going down to the hospital late November to meet with ENT and audiology for some more hearing tests.

On a final note, we learned a few days ago that Lauren will now be seen by a PT that is funded through the government! Yay! We've been on the waitlist for 7 months. I can't imagine where Lauren would be today if we hadn't digged into our own pockets and started with a private therapist when she was 6 months old. Canada's medicare system - universal access and publicly funded, but look what happens...children waiting for months and months for therapies. And what happens to those children whose parents can't afford to pay for private therapies?  Furthermore, even though Lauren will now have a publicly funded PT, we don't know how many therapy sessions she will get and at what frequency and for how long. We'll find out in November when we meet with the new PT for the first time for Lauren's initial assessment.

Thursday, October 14, 2010

Chapter 1: Palate Surgery Done

Lauren had her palate surgery this past Tuesday and was discharged today from the hospital. We ran into some respiratory issues following the surgery, but she's a trooper and took well to some new medication that was prescribed by the respiratory therapist to open up her airways and is now at home. The surgeon said the surgery went well and she had a U-shaped missing palate (as opposed to a V-shaped). He had to make some additional incisions and stitches because of the width of her missing palate, and expects her to be a swollen and sensitive in the mouth for a little while.

She's still a bit tired and groggy from the surgery and medications but otherwise is doing fine. We have been giving her tylenol and morphine at home to help manage the pain. She has been eating soft solids like yoghurt and baby foods the past two days and is slowly sipping her milk. She would rather eat from the spoon than drink from the sippy cup, so we are gently free pouring her milk into her mouth. Below is a picture of Lauren in her arm restraints, which she has to wear 24/7 for 3 weeks to prevent her hands from going in her mouth and pulling or infecting her stitches.

Steve and I are glad that the surgery is done and that finally this chapter of the book is closed. But many more chapters on the Lauren story awaits for all of us ....

Monday, October 11, 2010

Palate Surgery Tomorrow

I can't believe its already Thanksgiving. Lauren's surgery is tomorrow at 11am. 14 months ago, Lauren came into this world with a surprise for all of us. Sporting a cleft palate (complete absence of hard and soft palate) at birth, the little pea has taken everyone she knows for an emotional ride over the past year. 1 in 600 are the odds of having a cleft palate baby. Seems like small odds now that the number has lingered on us for awhile. From learning to drink her milk without the ability to suck and to eat solids without a rooftop in her mouth, these are some of the challenges she faced and has overcome.

The surgery will take about 3 hours and she'll be in the hospital for a few days for recovery. Following this, she'll have to wear arm restraints for 3 weeks, 24 hours a day, to prevent her hands from going in her mouth. Its going to be a LONG 3 weeks for us. Following the surgery, 6 weeks post operation, she'll return to the hospital for some follow-ups appointments.

I'm excited about the surgery tomorrow and I believe that everything should go smoothly. While we still have a long road ahead of us, I hope the palate repair and ear tubes will shed some light on her hearing issues and give us a better sense of direction to head in. But no matter what happens, Lauren will continue to grow and develop as best she can, guided by her family, friends and therapists.

I give thanks this Thanksgiving for having wonderful, supportive and loving family and friends. Its been hard on us,  but I know that its also hard for those around us as well. Not knowing what to say, how much to say, how much to ask, how much not to ask. Its a difficult situation to be in, for all of us, but I think we are fortunate to have an amazing support system to share openly Lauren's smiles and tears. I also give thanks for being blessed with a wonderful husband who loves Lauren unconditionally and is an optimistic and relaxed individual. Steve sees Lauren as perfect the way she is and really grounds and levels me out. And finally, I give thanks for two beautiful daughters who have given me a life I would have never imagined. I learn from them every day, big things and small things, the good and the bad. They have shaped me, softened me, and have made me a better person. And I give thanks to them.
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