What more is there to say?

Mary said, "Behold, I am the handmaid of the Lord.
May it be done to me according to your word."
Then the angel departed from her.

These were the last words from the gospel reading on December 20, 2011. This was also the day we had the CVS test performed. I took great comfort in those words, especially on that day. I was really nervous about the test (not really one for pain) and was also nervous about the risks involved and then the results themselves, well that goes without saying.  After reading those words, I was very much at peace. Not only the obvious, the words themselves, but I have always used that particular scripture as my own “pray without ceasing” prayer.

Well, almost three weeks later and here we are. Aaron and I received the call from the genetics counselor. Our little Alexander Dominic is SMA positive. As I am writing this the shock is still there. I guess shock isn’t the best word, as we knew the risks involved. We took those “risks” welcoming whatever child came our way, SMA or SMA free.  It still doesn’t make the news any easier.

Once again, it is a time for Aaron and I to let go. We must let go of expectations, plans for the future, and really any control we mistakenly thought we had over our own lives. We prayed for “normal.” We prayed for just a small slice of what other parents get every day. Aaron keeps reminding me that normal is relative and if I’m being totally honest if normal is what society tells us that it is, well, it’s almost downright disturbing.

We understand that you have no words of comfort and those that think they do…well, to be frank, they’re probably not very helpful. We don’t believe God only gives you what you can handle or that God wouldn’t do this to us if we weren’t strong enough to handle it. I don’t think and truly anyone with a stellar grasp of theology would agree that God doesn’t specifically punish people with some calamity to prove a point. Please save the clichés for someone else.

Here is what we know. God only creates things that are True, Good, and Beautiful. Whether or not that falls into what the world considers such is really not our problem.  We have no idea what the future holds for us. We can generally assume that Alex will present with the same type that Max is, but there are really no guarantees and to try and make plans seems like an effort in futility. We only know that it is a blip on the radar compared to eternity. We only hope that we can provide for our children and give them as many opportunities as possible, really all any parent can hope for. Please don’t assume this doesn’t make our current pain any less real. I sometimes think I know exactly how Mary felt when Simeon said to her, “-and you yourself a sword will pierce-“ (Luke 2:35). We experience that pain over and over anytime we see Max stifled by his physical limitations. I’m sure it will be no different for us with Alex. Thankfully, we will be better prepared to provide what Alex needs because we have walked this path before. I guess if the truth be told, we know this path better than raising a mobile child. In some ways having found out that Alex was SMA free would have provided its own set of challenges. How would we explain to Max the lottery that is genetics? We knew it would be painful to have one child “running free” while the other could only watch. Instead, perhaps we will have two beautiful boys who will completely understand each other.  

So what is helpful? Just treat us normally. Our lives have not changed, yet. We are still struggling with disappointment and I would be lying if I said we weren’t angry. Give us some space. Being around parents with small children is difficult for us. It is a painful reminder of our own family’s limitations. Continue to pray. Max has been such an incredible blessing and little Alex will be a powerhouse in his own right to be sure.

Peace.

Comments

[Carlin]

Thank you so much for the update. You are constantly in our prayers as you prepare to welcome your new precious addition!! We love you guys do much and I am constanly amazed by your strength and faith!!

[Judi Harvey]

Praying for all of you.

[Anna]

Traci,
I don't know you but as an acquaintance and will never understand the pain and anguish you are feeling right now- and as you said, Nothing I say will help- But The Lord has convicted me with this and I feel like I have to tell you that you and your husband are wonderful and holy and strong and amazing and your sons are and will be just like you.That God blesses each of us in different ways and I truly believe that every part of life is a blessing (all the "bad" and the good) for we do not understand God's plan. However, I have said this prayer for you many times and need to share it with you here also- God, grant me the serenity to accept the things I cannot change. The Courage to change the things I can. And the Wisdom to know the difference. I pray for peace for your family. It is impossible that this beautiful boy's birth will bring anything but true joy- but I pray for true and lasting peace for your family. May the Holy Spirit be with you all in this time. God Bless.