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.

My Comforter

I was headed to my first speaking engagement with a pit in my stomach...fear...probably. I was to speak to a women's group about my journey with little M and choosing joy. A bit of an emotional topic on a good day and definitely moreso on the three hours of sleep that she had afforded me the night before. As I began to drive, I thought to myself that I should play some worship music or spend time praying to calm my fear and help me prepare. God is my comforter, which I was actually going to discuss, so it made perfect sense to turn to Him. As I opened my CD case to pull out a worship CD, a Taylor Swift CD fell out first. I popped it into the CD player with a smile and turned it up. It brought back a lot of memories of trips to Mac and time in the hospital. You see, I couldn't listen to worship music and had a hard time praying in the beginning...I struggle to process and couldn't figure out how to respond. As Little M was taken to Mac, I sent Jeff out to buy the Taylor Swift CD from the pharmacy across the road...a strange request, I know. I played that CD ad nauseum over the next 6 months. Whenever, I felt pain in my stomach...my sign of stress...on went Taylor and I found some calm. As I played the CD again, I wondered why it had such a calming effect on me. The best I could come up with is that it is honest, but still full of youthful optimism and a whole lot of love. In the midst of pain and grief and struggle, the distraction of young love was just what I needed. Love seems to be Miss Swifts running theme and love is exactly what I needed to be surrounded by and exactly what I needed to give to my sweet new baby. God's love was always there of course and is the source of all love, but it was a bit too much for me to handle directly. I needed some time to work it through and come to a peace with His love and goodness despite the circumstances in which I found myself. I don't know that a Taylor Swift CD was a gift from him...a gentle reminder of His love while I worked this through or if that is a bit of a stretch...but I think He can be our comforter in ways that we cannot expect.

Surfing Girl

In my busyness to make breakfast and get the family in motion this morning, I left Megan for a minute under the watchful eyes of her big brothers, sitting on a child's rocking chair in the next room. Her older brothers began to laugh, which piqued my interest, so I took a look. My heart stopped at I discovered sweet little M, standing on the rocking chair with her arms out in a surfer pose, wiggling her body to rock the chair. Little girl, you know no limits...thankfully you can't understand your diagnosis and disregard it completely in how you live your life. Keep living it fully, sweet baby...although maybe with a slightly higher regard for your personal safety.

1000 Thanks

I was still struggling last week with figuring out who I am now and being content with it. I want to be the person people call for help and an active part of our friends and families life. Due to appointments and sickness and Jeff's crazy travelling, I feel more and more isolated and less and less able to do the things that I think are important. I lost sight of the value of being at home with my kids and found myself spending more time wandering around the house, uninspired, waiting for time to pass and something exciting to happen. Then I stumbled upon a link to a blog written by an author of a book entitled, "1000 Gifts". I read a few of her posting and some brief summaries of her book and already felt inspired. It seems that she was writing on my exact issue...in that she was encouraging people to see the gifts in the moment they are living in...the here and now. The next morning, at a mom's group we watched a video on the importance of raising God honouring children and living that example for them. It hit me as I listened that I've switched focus to the laundry and dishes and diapers and forgot why I was really home. I began to feel like it wasn't enough and was desperately looking for something that would be. Well, it is enough. In fact, it's more than enough. Being a mom that is involved with her children and is trying to raise them to love Christ is not always an easy or rewarding task, but it is an extremely important one. Although, I don't know what the book "1000 Gifts" is really about, I guessed it was looking for the gifts in each day, so I started to do that as well. I started my day making a sticker story with Hudson. Thank you God for stickers and the little boys who are facinated with them. Thank you for time spent together. Thank you for snow and the sun glistening off of it and the small footprints treking through it. Thank you for laughter and bread and happy times at the kitchen table. As I walked through my day, I tried to see it with new eyes. I had a good day. Thank you God for your gentle reminders and a refreshed perspective.