It is the morning of Dec 1st and I have been up since 4am! It is also, more importantly, Naomi's 4th birthday today!! Plenty of reason to be excited and celebrate, but not quite so at 4am. I am not sure if it is the brownie sundae I had last night that is causing this cramping in my stomach, or all the different thoughts and emotions this day brings this year! 6 months and one day ago we were told Naomi is on the Autism Spectrum. No major changes really took place from our day to day life routine or even for Naomi herself. And yet, we live in an entire different 'world' since then!! One with a new language, new mannerisms, new way of living, and feels so lonely!! I think that has been the hardest part, the loneliness I feel at times. Like we are on a dessert a island, and the only ones here are us...and Amanda. She is Naomi's tutor/therapist, and has become one of my favorite people!! Actually, I think I'd be easier if we were on a desert island, at least that way we wouldn't see everyone around us just going on with life, as though everything was normal and the same in ours!
I guess if you read the paragraph above you'd think I wasn't in the mood for much celebrating. But I am!! I have been thinking and planning for today for a few weeks now! But for entirely different reasons than with any other birthday for any of my four children. Anyone that knows us, knows that we love to through a party, to celebrate our kids as much as possible. But the last birthday we had for Naomi consisted of elaborate decorations that she didn't even notice, a cake that she didn't want to eat, and presents she had no desire to open. Not to mention the 30+ kids I had running around my house, while she sat in the middle of the living room watching her favorite TV show, oblivious to everyone of them. So we decided after that one to put parties on hold for a while...little did we know at the time that it might've been her last big party. Last year we went to Chuck E. Cheese with just a couple of other friends. She had a pretty good time there, but this year she is on a Gluten Free/Casein Free diet and can't have pizza...or cheese! So this year what I have been looking forward to doing most for her birthday is speaking at an Autism Awareness event tonight. Rachel, one of the teens (now young lady) that I was blessed to serve in our Youth Group, thought of us when the opportunity for a service project came up for a class of hers. She and the professor randomly picked today as the day of the event, not knowing it was Naomi's birthday. I choose to believe it is the hand of God reminding me that He hasn't forgotten about us, our our new found battles!
One of the things this year brings that I hadn't counted on is anxiety, concern, and heartbreak. I love our little girl more than words can express!! I am so thankful that she is mostly healthy, that she is here with us. But I am not sure that knowing she doesn't have any life threatening issues breaks my heart any less for her! At a recent Autism conference I was at a mom of 3 children shared some of her story. None of her kids are autistic, but they have each had major health issues that have caused a lot of the same impairments. She even had one of her children pass away. She shared that she wasn't quite sure what broke her heart more, burying her young child, or dying and knowing that she will leave behind two children that can't take care of themselves. Seeing her two children (and herself) get older, knowing that one day she won't be here to take care of them any longer, they can't take care of themselves, and worrying about who will. Perhaps since this marks another year of Naomi's life, this is fresh on my mind today. I also recently read a book by a mom of three girls on the spectrum. In one of the chapters she talked about shopping for Elmo dolls and Sesame Street toys for her daughter's birthday coming up... her daughter is turning 16!! So that too lingers on my mind. Will our Naomi be one of the 'miracle' stories of children who mostly/completely recover and go on to lead mostly typical lives?!?! Or will I still be shopping for Diego dolls and Fur Real pets 10 years from now??
Truth is, I don't know! No one does, no doctor can tell us what she'll be like, no therapist can give us a specific outcome to expect. We don't have a detailed treatment plan with a date in sight that we can circle and say, 'As long as we can make it to here, we'll be ok!' No, we can't hold our breath, brace ourselves for the tough times now, and say that this is only for this moment. Because the reality is this 'moment' may never pass!!
Mostly I am thankful for our God, our Saviour! I am thankful that even at 4 am He is there for me. As I finally got out of bed, tired of laying there willing myself to sleep, He sent me this message : Don't Over Think It. This is an email I receive each day on my phone. I grabbed my phone and the laptop at the same time and decided to read the email before opening up the laptop. What a great reminder, not only to not lay awake in my bed at 4am "overthinking" but that my God really is just that...my God. He looks down at an earth filled with billions of people and sees me! I am thankful that He does know what Naomi's future looks like. He does know how she will be taken care of long after her daddy and I are gone. He has a day circled on His calendar when all of this will end. Whether here on earth or in heaven with Him! How perfect that today marks the first day of the month when we celebrate Christ's birthday as well!! As we make plans for Christmas, make the lists, deal with the crowds in stores, and see our bank accounts dwindle away; let's not forget about The Gift that came to this Earth to fulfill every need on our list, to meet with each one of us personally, to fill our lives with more than we could ever have imagined! My pain, heartache, and disappoint is very real...and at times all I can see! But so is my God, and at times when I can't see Him or don't feel Him, He still there, never faltering in His care for us, never forsaking us, never forgetting about us.
I can celebrate our little girl today because regardless of how the world labels her, she is still our miracle!! Regardless of the battles and hard times, we'll fight them all on her behalf. Besides, who'd want a 'typical' life anyways!?!
Happy Birthday Nay-nay!! We love you more than you will ever know!!
Now off to make some Gluten Free-Dairy Free cupcakes!! And pray!!
If you'd like to celebrate her with us I had a great opportunity for you!! In honor of our precious girl, I and three other friends are running in a half marathon in January! If you'd be willing to make a donation in honor of Naomi we'd so appreciate it!! Marathon Fund
1 comment:
Samua, Very well written post- thanks for sharing your heart. Take comfort that the "what will the future look like" stage does conclude with a full peace that surpasses all understanding. I thank God that at 6-years-post diagnosis, I have full peace that God will provide for our son in ways that are better than I could ever ask or imagine. You need to spend time in the "scary future" stage...but HE will bring you our of it in HIS time.
The "lonliness stage" will come and go forever, but the flare ups come much less frequently now. Whenthey do come, HE has taught me to use that time to draw closer to HIM and closer to Kevin.
WE love you, Barb
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