My Little Star

I haven't written in a while, not because I have nothing to say, just because I've been tired, really tired and stretched and that doesn't really fit with the title of my blog. However, a comment made yesterday has had my mind in a tizzy and I knew it was time. Time to process and write and release it all. In the midst of all the excitement of the sale of our house, our real estate agent relayed a short story. She mentioned that when the other agent was here she asked if something was wrong with our little girl. I immediately wondered why? What gave it away? And was devastated by the response. It was a beautiful picture of M. sitting on the beach. There was no walker or wheelchair, her eyes weren't crossed, her stumble didn't show...how did they know? A complete stranger saw it. It's not that I hide her disorder, I openly discuss it with anyone who is interested. I adore her and feel that she is exactly who she is suppose to be. However, I think I had thought that because there was no wheelchair or helmet or oxygen mask, we had escaped the scrutiny of others. My heart ached as I realized that M's journey just got harder as she wears her diagnosis on her face. My beautiful girl, God's perfect masterpiece, others may see differently. How am I suppose to process this? I know that Jeff wouldn't care. He didn't. He's never been one for worrying about anyone else's opinion. I love that about him and pray that it rubs off on the rest of us. I just know that I've seen the cruelty of others, the comments, the taunting and my mother instincts wanted to hide sweet baby girl away from it all. As she is walking and talking, I thought that maybe I could. Maybe she would blend in and not be noticed. Well darling, I had too small of dreams for you. I guess now that you've been spotted, you are going to have to do exactly what you are best at doing, shine baby, shine! I just pray that the world is kind to you as you do.

Yogariffic!

Well it is never a good sign when your husband laughs as he watches you exit the store with your newly purchased yoga mat. To be fair, I don't think either of us thought that this day would come. I may truly be one of the world's most naturally inflexible people. I remember avoiding kayaking as a child at summer camp, because I couldn't sit up with my legs straight in front of me...I still can't. Despite my avoidance of all things requiring flexibility...I keep hearing about the benefits of stretching and being flexible. Heading rapidly towards middle age...I'm fighting against a body that is ready for retirement. I creak and groan and move around like a creature in the night rather than a hip and happening young mama. As I have seen various specialist over the years to deal with issues in my feet and knees and hips and back...it keeps coming back to needing to stretch my muscles. In my attempt to find balance, I decided that yoga may finally be worth the embarrassment and searched for a perfect class for me. I found one, but didn't feel like I could use one more minute of help from my faithful village of supporters, so decided to keep waiting until a better time. Then I saw a sign...literally...that advertised a yoga class, close to my house and at exactly the right time in the week when I already had help but an hour to spare before Meg's therapy. I signed up and attended my first class today. I am one for exaggeration and was hoping that I had exaggerated my lack of flexibility even to myself. Not so. I really cannot touch my toes. I really cannot sit up without crossing my knees. I really am not made for yoga. However, I am beyond embarrassment so am just going to run with it. I've got 8 weeks of yogariffic fun ahead. Perhaps I may even move slightly more limber when it is all said and done.

Grounded

I've struggles these past couple of months with finding stability in my life. As Jeff comes and goes with work, my world seems to crumble and rise. The delicate balance of my life seems to be tested by the increased work and travel needs of Jeff. The wave of persistent colds and a brutal stomach bug did not help with my struggles as it left me feeling more overwhelmed and isolated. Then spring came. The sun has come. We've gone for walks and bike rides. Thanks to some meds, an improved sleep routine and a blackened window, Little M. is starting to sleep well fairly consistently. Jeff returned...although not for long. Even Little M's fits which have been one of my hardest struggles have quieted. Instead of feeling like I was barely hanging on, I feel like dancing and singing and living life to the fullest. It seems bizarre to picture myself only days ago in such a broken state. I wish that I wasn't so emotional and vulnerable. I wish I could be more grounded. I feel slightly seasick from the constant back and forth motion of my emotion. I know that I can find that stability in Christ. I just need to remember to take my eyes off myself and my sinking ship and look up during the storm.

Connecting

I began this blog to process my many thoughts on parenting a child with a rare genetic disorder. It began with a pile of papers by my bedside that I scribbled away on in the middle of the night, trying to find some peace and rest in my mind so that the rest of me could sleep. After hearing of other blogs, I decided to write my thoughts online to allow God to use it to connect with others if He so lead. After searching for my own blog and being unable to find it, I started to doubt that idea, but continued writing for the sake of posterity...like a permanent journal for my fleeting memory...and for a few faithful family followers. Then it happened. Last week, I received an e-mail from another parent of a child with Trisomy 8. She had found my blog and was wanting to connect. It made me smile and so thankful. God did use my simple little blog and blessed me abundantly by doing so. Since Little M was diagnosed I have wanted nothing more than answers and to connect with someone else in my boat. All the children's hospital could offer me was a website to a support group in the UK. After months of searching, I found a group online, but have been unable to connect despite various attempts to talk to the few other parents out there. I'm guessing they're a little busy too. However, that ache to feel less isolated, has remained. I find it amazing that God could use this blog to bring into my life the answer to this prayer. Little M and this other young boy don't seem to share too much in common, but at least there is another mom out there, who knows my heart in a way not many can. What a gift! I guess we never know what God will use, we just need to be open vessels and wait on His good and perfect timing.

Slowing Down and Gearing Up

I've been rather uninspired lately, so haven't written, but thought it was due time. I'm afraid that stomach flu has hit the house, so it was a quiet weekend. As it was only my eldest sick, it was actually almost nice as we stayed home and played too many hour of Wii and read stories and just hung out. I'm still holding my breath hoping that it ends with him. As Jeff heads out on another trip tomorrow my prayer is that he is spared. I can't imagine being sick on an airplane...not something I want him to add to his resume. I wish it didn't take illness to force us to slow down. For some reason I feel like I always need to be moving...probably because it's usually true. There always seems to be something needing cleaning or purchasing or a person needing a call. In the moments where I pause to read a book or play a game with the boys, I savour the stillness and that feeling of living in the moment. I don't understand why it seems so hard for me to find my way back to that place, why I always have the feeling that I need to be doing something else. That's my goal of the week...to live in the moment. There is a lot of blessings and joy to be found in those moments we tend to rush through. I know that the busyness of the week ahead will brush aside some of my idealism, but it's nice to at least look at the new week with high hopes!

Denture Dread

My husband is a handsome man...at least to me. He may be a little short in the hair department, but I've barely noticed the sharp decrease in quantity over the last 10 years. However, he has. He notices the shifting hairline and the hidden white strands. I've always wondered why he seems so bothered and tried to encouraged him. Then it happened. I was brushing my teeth last week and noticed that my gums felt funny. When I looked in the mirror I discovered that my gum line was receeding in certain sections and definitely not looking stellar. I alerted Jeff to the possiblity that I may have gum disease. I brush and occasionally rally to floss. What was going on? Then it struck me. I'm deteriorating. I'm aging. This body of mine is not going to last forever...although I've certainly increased flossing and garggling to help hold back the process. Aging is not an easy thought to ponder. I know where I'm headed and desperately want to want to go to heaven, but it's completely unknown, so I struggle. I'm also not sure I want to go through the process to get there. I'm not so good with the unknown. I guess I'm going to have to go back to the trust. I either trust in God's goodness or I don't. Apparently this lesson is going to be repeated in my life in many more ways than with Little M. Hello dentures...I'm getting ready to meet you!

Then Comes Spring

I once took a Bible study that focused on the seasons of our life. It labelled certain stages as certain seasons. I don't remember how it was all defined, but have certainly felt like I've been in winter...literally and figuratively speaking. This past week held some dark days for me as I struggled with feeling overwhelmed and slightly sinking. It began with good news, in that Little M is starting to imitate and show understanding in words, so they want to see her now for speech therapy on a more regular basis. This should be thrilling...but I just felt weighted down with another weekly appointment to balance. Instead of pulling out the calendar and using my creative juices to figure out how to tackle this new challenge, I just felt like escaping my life for a while. I wished I was a bear and could crawl into a cave and hibernate for a couple months. The sleep analogy is also very appropriate in that I've been tired. Truly tired. Little M has had two rocky months with sleep. Numerous times a week she has been waking for 3 to 8 hour periods and screaming if not in our company. This has created numerous questions and concerns. Is it connected to her neurological issues, is it behavioural? Is there any way to know? After almost two months of this alert nighttime behaviour and a desperate discussion with her pediatrician along with a thorough examination, the doctor suggested it may be neurological and she should start on melatonin to help her sleep. The first night was stellar but the following three a nightmare. My hopes of a quick fix evaporated along with my ability to cope with life. We moved a single bed into her room with hopes of at least one of us getting some sleep and perhaps the other while keeping her company. Our sleep concern was only a small component of our concern over M's sleeplessness. She struggles to fight infection and was trying to get over pneumonia...sleep was definitely needed. As well, her tone seems to severely drop with illness and lack of sleep causing more falling and injuries to herself. It also increases chocking risk and tantrums...both very stressful and dangerous to M. On Thursday at physio, our OT and PT were there and observed her in this tired and much more "floppy" state. They voiced concern that sleep and illness do not generally account for such a change in tone. They suggested a consult with the neuromuscular and metabolics departments at Mac to look for some answers. We've already consulted with these departments at birth, but look to be going for round 2. As Jeff's crazy work travelling schedule hung over me and the rain kept coming, I truly felt like I was close to my breaking point and talked to God to remind him of that. A great small group and some encouraging friends helped break up this dreary week, but nothing brought me hope like today. The bed in her room has worked well and she responds well to Jeff sleeping in her room when she wakes and goes back to sleep quicker and allows us all more sleep. With more sleep comes a happier and more vibrant little M. When she woke I said "hi M.." to which she responded "hi Mama". We repeated this numerous times and had a happy cuddle time before dressing for the day and having breakfast. Her speech and focus seemed strong but also her eating. At lunch, Jeff and I stared in wonder as Little M ate a cracker. Every week I lay out various items on her tray to have her try to eat, most of which are thrown on the floor. Crackers have consistenly been a floor item, until today. She took a bite and another bite! Then they hit the floor, but it was still progress. She even ate small pieces of grapes. After 19 months of trying to move beyond pureed food...this was a monumentous occasion. The day doesn't end there. After supper, we went to Walmart to walk around. Since I had Jeff with me and had no shopping requirements, we let Meg walk holding our hand around the store. Her excitement over everything and enthusaism to be able to walk and touch objects made Jeff and I both smile. As I walked with her little hand in mine, I felt overwhelmed, but this time with joy. I was walking with my daughter. My daughter was walking. How far you've come little girl! It will never get old. It will always be a miracle and a reminder of God's love. As I see the green grass outside today and felt the warmer air, it gave me a new burst of hope for this week...after winter comes spring.