I love the baby stage, I always have. It's the only moment when you actually feel somewhat in control of your child's life. You get to choose what to feed her,what she'll wear, who'll she'll spend time with and best of all you can tell her what to think...yes you dooo love peas! There are better things then this of course, the kisses, the cuddles, the smiles...need I say more?
One way I rationalized this T18 thing was by considering my daughter with T18 as experiencing an extended baby stage. Each day that our girl is blessed with another day she develops and gains skills but at a much slower rate than a typical baby. So if your like me and love the baby stage what a bonus.
Then I heard about Brooke Greenberg. She's been in a "baby" stage for 16 years. Diagnosed with Syndrome "X" essentially Brooke stopped growing at 11 months old. I saw her story on TLC and I couldn't help to compare Brooke's issues to Alyssa's. I really had identified with her mother, and her family painted a reality-based picture of what our future could be like. Different yes, but similar...then it really hit me I'm thinking about a future for us with Alyssa.
This is something I don't often allow myself to do. I've moved beyond keeping myself to just the day (I now buy more than a 2 weeks worth of diapers) but I've never looked much beyond a month. Seriously I do not allow my heart to fully live with a future view of our lives. Do I have hope yes, and faith yes but my will is not greater than God's. I must submit to Him and to His plan. What if His plan is not like my own. Everything according to His purpose for my benefit and to His glory. We have be blessed with 13 months wonderful months. Our hearts desire is for Alyssa to be with us for many more years. Yet she may not be...
It was like a hitting a concrete wall when I allowed my minds eye to shop along side of Brooke's mom as she tried to find "teen-style" clothes for her beautiful pint sized girl in a baby/toddler shop. I thought to myself "Go , mom! The way you treat Brooke is the way others will treat her..." When Brooke's mom confessed she didn't always tell strangers Brooke's natural age, she allowed them to assume she meant 16 months when she plainly said "16". I could relate, might I do the same thing? While Alyssa could grow bigger than Brooke, will she?
Anyway that was 2 weeks ago in the mean time we had a concern regarding Alyssa's heart and many of the old fears came flooding back. Only to be put back into perspective the next day when we received a good Echo report on her heart. A quick dip on the T18 roller coaster that preceded a bigger drop not for our immediate family but a member of our extended T18 family.
Brianna (www.brianngiveshope.blogspot.com)had another blue spell, with these spells confirmed as being pulmonary hypertension; there's nothing more that can be done. After a brief hospital stay over the weekend she is now home on "comfort care". okay this is worse then hitting a concrete wall...
I haven't blogged about this yet because I want to encourage Brianna and her family. I know that lifting them up in prayer is one of the best things I (anyone) can do. I do that and will continue to pray for them. I just don't know if sharing the fears that stir in me in this whole T18 journey would be the appropriate thing right now. Not that it's wrong to talk about the realities of T18, or that Brenda/Jerry are unaware or easily offended. Just that when I open the door to those thought what a doozy that first step can be...and I don't know how encouraging that can be for Brianna's family, my own, or anyone who visits here wanting hope.
Last year I frantically looked up T18 to get answers. The doctors hadn't given us the official diagnosis for Alyssa yet, it was by a chance that I gleaned this was something they were looking into...after coming to honor page after honor page of precious babies held in memorial I found Brianna Botts. A baby girl (16 month old) living with T18! I watched the news clip of the Botts family story, saw the pictures of this cute little girl and thought "wow, look at that miracle." I contacted Brenda right away, and in what I've learned is her innate kind way..she reached out to me immediately. Brenda has guided me along this journey with a mixture of zeal and restraint, always sharing the realities of T18 with a gentle candor, for this I am always grateful.
Brianna does give hope, she gave it to me in the wee morning hours on July 16th 2008. Brianna has overcome much in her life and there is no one on this earth to say she will not overcome more. If you've made it this far in my rambling then I ask for you to fervently pray for Brianna and her family..pray for their hearts, spirits and minds to be graciously prepared for what the Lord has in store for Brianna. Hope remains and I pray that God who has been merciful to the Botts family will continue to sustain them.
So that's how my T18 roller coaster has been like lately: up and down, swift turns left and right with no end in sight...thankfully.