I am having a hard time walking the line between being hopeful and facing reality. I am not exactly an optimistic person to begin with. If we start something all of the potentially awful things that could happen are what come to me first. For example: Mark says, lets go camping. I think, what if there is a river or a bear, and we lose Malachi for one second, he's bear meat or drowned. What if the they are too cold. I couldn't bear to have someone wet the sleeping bag. See what I mean? That is what comes to me first. As an after thought I will think of some good fun things. Pictures will be nice and it always smells pretty good up there. We would have fun. I am working on this.
However, with Mercy, it is hard for me. We obviously have many bad things already staring us in the face. Her kidneys don't work very well. Her heart has a bypass that is intravalvular and in an event of elevated heart rate could cause a heart attack. We can't do further testing because of the kidneys. We cant test her eye for that reason. We are still working on fixing her hip dysplatia. Her foot is still in it's cast. We are trying to fatten her up (which is reasonably working, she is just over 7 pounds) to get her in for her cleft surgery. These are not the things that worry me though. I think I can handle her body not working. I worry about what her mind will let her do.
This is where my dilemma starts. There is no clear line of where I should hope and where I should accept. I know that we will know in good time what she can and can't do, but I want to dream big dreams for her. I want to believe that she will walk and talk. I want to believe that she will write her name. But I don't want to be devastated if that does not happen. That looks so selfish when it is on the page like that. But it is a reality I face everyday.
Do I trust God? Yes. But I still worry. I still can't bear to think about my baby not "being there" Do I regret not listening to the doctors and terminating the pregnancy? Never, not for a second. I know she can feel. She can hear me. I make her cry if I am there and not holding her. She loves to have her little fanny in the air when I take off her diaper and it is like she almost smiles. Can I expect her to be "normal?" No. That I have accepted. She won't be like her brother or sister. And that is great. Who wants to be just like someone else anyway.
But I want her to be here. I want her to be able to talk to me. I want her to be able to walk and play. I want to know she can enjoy things. When the diagnosis is "moderate to severe/profound" retardation of course I want to be on that moderate side. But honestly, she is missing over 300 genes. There are others with this with a lot less deletion that cannot even eat. My heart is heavy. I pray and hope and dream for "moderate" retardation. But in my heart I am preparing for "profound" And I cannot reconcile the two. As she picks up her head on my chest I wonder how much of that is just muscles moving and how much is her thinking about doing it. I feel like I fail her when I don't believe that she will walk or talk. But I can't lie and say I don't think it.
I feel like I am torn in two. Hope and Despair. Of course I want to choose hope for her and I am working on it. It just seems to be that despair is much easier. It is easier to expect bad things. Trust and Hope are much harder. Everyday I am walking down this thin thin line between promise of hope and the threat of failure. The dance between the two sides is exhausting. Sometimes I do a crab walk backward with half of me on each side. My goal is to just jump to one side. Hopefully the hope side.
But for now I walk between the two, waiting and watching. Everyday is a gift that I am trying to enjoy. I am trying to live only for that day. To enjoy what each of my beautiful children have to offer. To enjoy the great responsibility of raising them to be selfless and loving people. And to accept the Mercy that God gives me new every morning.
You are doing a fabulous job! Try to just trust that God will give you what you need, when you need it. I know that deep down you believe that and he's proved it over and over.
ReplyDeleteI totally understand just wanting to know what the future holds, thinking that it will help you better handle it. I just want to say that you two have amazed us with how you are handling each little/big step so far. Keep going and don't be afraid to say what's on your mind. I can't imagine all the things you contemplate on a daily basis. The hard parts, or what you might think of as negative, are all still a part of this journey and we don't think any less of you for occasionally faltering.
Mercy is amazing. We call her the miracle baby. She is definitely in there--to what degree remains to be seen--but I've seen her respond to your voice. She knows her mama. I've seen her look around and stare into eyes. She's in there.
She is lovable and sweet just like the other two. Just focus on one thing at a time and the other two will probably balance things out for you.
Keep looking forward and up. We love you!
Hi McKenzie,
ReplyDeleteWe haven't met yet, but my name is Laurie, and I have a 1-year old daughter with WHS named Kaylee. Reading your blog, I found myself just nodding-- tears welling in my eyes-- because I feel so much of what you do. The longing for hope to trump fear; the wish to believe that all will be okay, even though you need to see the evidence of such before your mind can fully accept it. It has been a year for me on this journey, and I confess that I still have not found total peace-- mostly because I am made the same way that you are. I was raised in a home of precaution and fear, so I inherited the tendency to prepare for the worst before I can enjoy the best. This makes raising a child with this syndrome so difficult-- no two children with it develop the same. At 1 year, Kaylee is still not able to push up on her arms or lift her head for more than a few, brief seconds. I worry that she never will-- even if logic tells me that she has to be able to do that at some point-- and with all of the therapy she receives through Early Intervention and privately, I suppose I expected that she would have hit milestones already--even if the syndrome makes it natural for them to be delayed. I see other children with WHS who are talking, walking, and going to school. I dream of that for Kaylee...but truth be told, I still grieve for the daughter I didn't have, too. The one who will go to dancing school, have a boyfriend, graduate high school, go to a prom, get married and bear children of her own. The best advice I received was to only look at her life in steps of 1 day at a time. As a perfectionist with OCD, this is very hard for me to do, but it has helped assuage the gnawing doubts and fears I have for her future. And when you get right down to it, none of us really know what the next day is going to bring.
Hang in there and know that you are not alone. You may be across the country, but I am here for you if you need anything-- to talk, to cry, to celebrate. I, too, keep a blog, but I keep it private. If you'd like to read about our journey this past year, just send me your e-mail address and I'll be happy to add you as a follower. You will see that your feelings are quite natural and have been shared by us all at one time or another! Many hugs to you and little Mercy! I look forward to sharing in your journey! xo