For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)
is the one year anniversary of us learning that Luke would have a
congenital heart defect and Down syndrome... it's so amazing how we've
grown from two parents who were terrified for the future of our unborn
son to a family complete in our love for one another! When I reflect back on that day, I will never forget the way I felt... lost, hopeless, scared, defeated, etc., etc. The only way I can justify those feelings as I look back really just centers around the fact that I was uneducated about Down syndrome, I underestimated the amount of support we'd receive from family, friends and how resources like our health insurance and the flexibility of our employers would help us manage. I also underestimated myself. I remember thinking to myself on the day we found out that all I'd be capable of after baby was born was laying in bed, curled up in the fetal position, sobbing about the state of my family.
Isn't it amazing how much a person can grow and stretch and how far they can come when faced with a challenge? I look back on that person I was 365 days ago and I am so proud of how differently I feel about Down syndrome than I did just one year ago. Yes, Luke does have a 47th chromosome in every cell of his body. We know that his extra genetic material is affecting the way he is developing as we watch him slowly inch toward milestones that others his age have beat him at reaching (sometimes they have beat him not just by days, weeks or a month, but months - as in, more than one). We know that his extra genetic material caused his heart to develop incorrectly in utero, leading to a congenital heart defect known as Transitional Atrioventricular Canal Defect. Bigger than all of those things however, are the positives and big wins that he has brought into our lives. [At this point in my writing, tears are pouring down my face] I am so much stronger in my faith than I was a year ago and the guidance, comfort and peace that has brought me, is leading me down a path and towards a future of hope and delight. I am truly excited about what tomorrow will bring! As stated in Jeremiah 29:11 above, the Lord has plans to prosper MY LIFE! Isn't that kind of love amazing! Out of all the people of the earth, I am loved enough that an individual plan was created to give me a plan for hope and a future!?! And even bigger than that, there is a plan for all of us! The complexity of that is incomprehensible to me! Completely amazing!
As I watch the dynamic of our family develop, I love my husband more than I ever imagined possible! He has taken the initiative to be an active and involved father and Matthew absolutely adores him! Luke is too small to show much preference, but he is completely comfortable in his daddy's arms and his love is obvious as we experience him grin and coo and plant his sweet kisses on our cheeks. The love I feel for our independent Matthew is completely and totally consuming. I yearn to hear him tell us "Love you Mommy, Love you baby (which is his word for Luke)" before bedtime each night. I am excited to experience him learning new vocabulary and watch him trying new things - lately it's been the "spin jump", where he spins around twice and then adds a small jump at the end... usually never getting more than two inches off the ground! He is so active and could run and play for hours! He is pure entertainment! And of course, there is Luke.... he is the most patient little guy and is a source of constant inspiration when it comes to self confidence. Earlier I spoke about how long it takes him to reach some of his milestones and the self confidence and persistence he shares is a true source of inspiration to me! Admittedly, he doesn't know he's behind... but I like to think of it more along the lines of "he wouldn't care anyways". Regardless of where he's at on any kind of developmental chart, he always seems pleased with his progress! He is full of smiles and a good attitude - one who is always willing to earn his success. He endures hours of physical therapy each week and is slowly, but surely striving to reach goals!
If I could go back and talk to me one year ago today, I would tell me that life was going to be good and I would say it with conviction! I wish I could have reassured myself that the stress and worry would fade into a comfortable, and even enjoyable (imagine that!) life filled with love and excitement for what tomorrow would bring! I would tell myself with the confidence that can only come from experience that I would feel full and even more than that, I would still feel normal!
It's amazing what can happen in just one year!