So it's a few days before Alyssa's 2nd birthday! Wow!! I know I've been a little more on edge, and trying not to think about it too much. Yet this really is a milestone, a BIG one. I mean we went from counting hours of life, to days, allowing ourselves to enjoy the celebration of weeks gained and then months. Counting each along the way as big milestones and they were (they are), but to see Alyssa turning two...it's hard to come up with the appropriate words.
Foremost I thank God for this gift of time with our daughter. I know it is by His hand alone that we have enjoyed the various milestone and have been able to breathe under the weight of Trisomy 18. God has given us a great support system in each other as a family, and in various friends and extended family. These people in our lives are the tools of His grace and our tangible evidence of His kept promises. It hasn't been easy but God has used practical measures/means in our daily lives to encourage and strengthen us. The prayers on our behalf put forth by strangers and friends alike have been heard and continue to lift us up.
Recently Rick Santorum's daughter Bella celebrated her 2nd birthday. She also has full T18. He wrote an article in the Philadelphia Inquirer, that nicely framed the experience of his family with T18. Some key points he made about the battle with insurers, validation for the value of his child's life and the joy of having his daughter is a common theme for many of us. I wish I could wrap up the emotion and experience as well as he did.
As time goes on, as we balance the grief or is it fear of the unknown certain future (oxymoron~ I know) for our daughter with this diagnosis; I find more things to be thankful for! There are the hard days, like when Alyssa wakes up with a cold that seemingly moved in over night. It's difficult to see her struggling and the devil on my should whispers..."psst, this could be it. This could be the time." Or earlier this week when she woke up two days in a row having a asthma attack; and that feeling comes over my body as I rush to meet her needs (You know the feeling where half your tongue goes numb with an electric shock that travels down your back, you squirm to rid yourself of the feeling but it tickles ya' like a thousand tiny bugs)~ yea that feeling.
There are good days a lot of them many clumped together so tightly that we almost forget the thing that our daughter is afflicted with...oh T18. Like today, seeing her groove to her dad playing guitar; clapping and smiling truly enjoying the entertainment.
This blog and our caring bridge page has been a wonderful outlet too. It's great to read the response from others, very refreshing; whether it's advice, a "hello". It really brings my heart joy to get a note from another parent saying "thanks" for sharing your experience as it's giving them hope , answering questions, or boldly opposing the information that they were provided by their child's' doctor. Learning about other T18 and trying to follow their story is a great source of inspiration too. This experience can be isolating if you let it. It's not hard to get discouraged by constant need to stay on top of the various issues. It's not just the day to day care that can be wearing. It's the appointments, follow up, it's the emotional connections, it's so much that I can't even find the right words for..yet knowing that their our others out there rooting you on; walking the walk too~ it helps.
From day one well meaning friends/families; many Christians wanting to convey God's love and our human frailness will say " You know none of us are promised tomorrow. None of our loved ones, our children may live beyond today..." I know this is true, yet we are human and made in such a way to forget how frail we are or how little control we truly have..otherwise we wouldn't have dominion over this land or conquer the challenges God has put before us to prepare us. The fact is I am stuck on the notion that a simple cold could = death for my daughter with T18. That another unknown quirk as a result of her condition could = death for my daughter. While this thought isn't as overwhelming as it had been in the early days, it is always there looming. Some days the cloud of it is bigger and stormier than others, but it's always there. I celebrate Alyssa's life everyday, thankful everyday; just as I am for my other kids/love ones. The truth is though just as we love our kids equally but differently my concern for her is different. this is just something I have got to accept. At times I feel like her life is like sand in my cupped hands; the grains slowly seeping through my fingers despite my best efforts for them not too.
I recently talked to a mom who has a 12 year old healthy daughter and I commented that her girl was tall for her age. The mom smiled warmly at me and said "can you believe she was born 11 weeks early, just 2lbs and not expected to live." In her eyes I could see her going back to her daughters' birthday and she continued telling me her daughters birth story. I enjoyed hearing every bit, watching and listening to her as she relived the moments that angered her (doctors not listening or giving information), moments that caused her to stop breathing ( her daughter having brachycardia), and moments of joy (when her daughter acknowledge her presence with a glance). This experience of being in the NICU for 10 weeks before being able to take her child home, and the following months when she had a Pulse-Ox monitor and various nursing responsibilities to care for her fragile child; remained with this mother; who now has a healthy happy 12 year old. So maybe I'm not as hopeless as I sometime allow myself to think.
In all this rambling I want to mention that Alyssa is asleep with her dad on the bed~ exhausted from a day of hard work and play. I should wrap this up and start her bed time routine~ running rather late tonight!!
Today Alyssa spent time at Lauren's House (our respite provider). They were able to borrow a stander and put her in it. It was amazing to see Alyssa standing, literally brought tears to my eyes. She was happy, smiling, babbling, reaching out for toys and watching the other kids around her. She is so ready for this transition. Please pray that her insurance, once provided with this "new" information will finally approve a stander for her!!! If nothing else that her early intervention provider could find one for us to borrow~something so far has not been possible. I'll post pictures of her from today soon.
I want to post some pictures of her recent ENT visit and show how that see and then clean her ears. It is interesting. She went to an appointment earlier this week, and the doctor said "you know she (Alyssa) is getting less floppy. I mean she is really looking stronger and seems to be doing well." Hey~ we'll take the compliment! It's just funny about how low the expectations are for this kids, even if they are always outwardly voiced; they are there. Many times I don't even catch wind of it until a comment like that is made.
My daughter has potential, the author of your medical book didn't write her life. God did!
of hearing loss she has. Learning this information has been hard, but she seems to hear as she rocks out to music and will respond to her name.
This is the prone stander. It was nice to see her up but she hyper-extended her head a bit. She still needs a little reminder to maintian a proprer head tilt. It was great to see her standing!!
This is the prone stander. It was nice to see her up but she hyper-extended her head a bit. She still needs a little reminder to maintian a proprer head tilt. It was great to see her standing!!
