Get over it.

It seems like people only remember that  we’re in this terrible situation and have empathy for us as long as they are personally affected by the shock of hearing about our situation. That shock fades. Our hardship doesn’t.  To these few, it’s like  a one time tragedy, and I swear they wonder why we’re not over it yet.  (I’m pretty sure I have thought the same things after hearing of some family struggling or a child with Down’s Syndrome. But now I know better.) In reality,  I’m  a shell of  the person I was. I often  get  numb instead of  sad, and tired instead of angry. I still deal with the people in the grocery store who stare or the people at the  doctor’s offices  who don’t know what to say.

Sorry for everybody who saw me break down on Sunday. A few people actually asked if they had done or said something to me.  Nope. Nada. I once  broke down before a doctor’s  visit for the simple reason that I walked by a handicapped parking space on my way in the building.

It’s probably just been harder with my time split between my daughter and work. This is  the hardest time in my entire life. I don’t get to sleep and I don’t get a break. And I blog about it here because no one  really wants to hear about it.  I thought work would be a good  distraction, and maybe it will be. I can  pretend that my life at home doesn’t  exist for a few hours and then come home feeling guilty. But times like today, it’s not as good a distraction and I end up feeling worse. Charley has experienced the  same thing.

Don’t get me wrong. People have been wonderful and helpful and encouraging and supportive and great. Just can’t say that enough.

But Charley and I have been losing our faith. Not because of our daughter or her condition, but because of life. That’s one of the things we were dealing with on Sunday. That just makes everything harder, you know.

..  

I was at the hospital a long time today. Just got home an hour ago. I watched professionals hurt my daughter for what seemed like forever. The reason for this pain was due to my insurance losing paperwork–  which kept Laelie in casts– which needed to be  redone– which included sawing them off and working her into new ones– which hurt her– which could have been avoided if people had paid attention to their paperwork– which would have meant they needed to care — which they don’t. I don’t even ask why anymore; I just drudge through it.  

6 Responses to “Get over it.”

  1. Bethany Bassett says:

    Hi Alexis & Charley,
    I just wanted to say no, my goodness no, you shouldn’t “be over it yet.” I’ve been reading your daily updates and can hardly fathom the difficulties you are going through. It has got to be so far beyond frustrating trying to take care of your precious daughter when insurance and medical companies don’t give a crap. Yet in the videos you post, Laelia’s face is absolutely lit up with joy, and your voices are brimming with love for her, and that is miraculous. I hope you know that it is absolutely okay to be depressed and angry, to feel your faith slipping through your fingers, to struggle, to care so much for your little girl that you CAN’T just get over it. I also hope that every time Laelie grins at you, you’ll remember that there are people out there thinking of you and praying for you and wishing you as many moments of joy as possible! Do keep us updated.

  2. Kariann Virissimo says:

    I work with Brenda Powell and I have been following your story since you were blessed with your daughter. I do understand how you feel. My son Noah received a heart transplant about two years ago. He is doing well today but he is terminal. It never seems to fail that people do not hear the terminal part when I tell them about him. Once they hear what happened they are shocked and then they go home to their healthy family and forget that this is what we face everyday, hour, minute and second.
    I know that God blessed my family with Noah for many reasons, the funny thing is that the reasons are not for the child but the parents and others around him. Noah has taught me so much in the almost three years I have been blessed to have him that I would not change a thing, and one day you may feel the same. I always wondered what I had done so wrong to be given a child who was medically challanged, but now I try to think that I must be a good mother or God would not have given him to me. I would love to talk to you if you would be interested.
    Love,
    Kariann Virissimo

  3. Kristine Bunyan says:

    Dear Wesley Family:

    My cousin, Kathleen, from Placerville had asked me to write you. I have never met you but saw the precious photos of your sweet, beautiful daughter. What a gift and joy she is and how really blessed you must be to be carefully chosen by God to take care of her. There will be so many challenges in your lives in so many ways, however, God has a plan and purpose for your daughter in this world that requires the best parents. I am certain that God listens to prayers.

    Our sixteen year old daughter, Daryl, has had a few physical challenges during the past ten years that have been most difficult for her. She was diagnosed with Scoliosis and is now in the process of preparing for upper and lower jaw surgery this year. We still don’t know if the insurance will cover it and I am not worried. God has provided for us in different ways. When our daughter was first diagnosed with scoliosis we were not getting a paycheck and had no insurance. That is when I just had to give up all my fears, tears and frustration to God. She qualified for Medi Cal and was covered for her treatment for the first three years of therapy. I had to do alot of calling and paper work for each year for her to qualify. The first set of papers were confusing and difficult but I got help from the office. I even sent her picture with the forms so there would be a face with her name. It did help. Make lots of copies of your daughter and slip it with the insurance papers with a cover letter and a prayer. I always called the doctors office to make sure that they had the proper forms before office visits as well. Somehow, things can get mixed up. I felt I was on the phone to alot of people for just every step of Daryl’s therapy. But that is how I kept on top of things. Private insurance is expensive for us and we have not started the process to apply for the surgery yet. We paid cash for her orthnatic braces because private insurance did not pay for it. The Dr. lowered his fees. I have also experienced the insurance coverage and eligibility changes quite frequently. My faith increases with each difficulty. God has been in the works working on me through these adversities.

    I just want to pass on a little of my testimony and to encourage you to be angry and frustrated when you need to. It’s healthy and OK! It’s OK to be angry at God, too! Lack of sleep and hormone changes do not help either. Allow yourselves a “break” as a couple. Perhaps you might want to start thinking about sharing your daughter with loving family members that would love to spend time with your daughter and give yourselves a couple of hours for a date (or sleep). Don’t forget to feed your marriage and don’t let this stress consume you. Get connected with a small group in your area that have had (or are) the same experiences which will provide you spiritual and emotional encouragement, support and growth. If you can’t find one, maybe you can create one from your church. In the process you will expose your daughter to grow in Christ and establish lifelong relationships as well.

    My cousin has said that you were the sweetest couple and I hope I have not intruded and shared too much. May God guide you both and bless your new family.

    The peace of Christ be with you,

    Kristine Bunyan

  4. aduma says:

    praying for you guys…

  5. Kristine Bunyan says:

    Dear Alexis:

    I am resubmitting my daughter’s orthopedic surgeon name to this web site. He is one of the top surgeons in this field. Other surgeons study under him as well. He was wonderful to all patients. I saw many different conditions in the waiting room. It was far but worth it for my daughter. His name is:

    Dr. Vernon T. Tolo
    Children’s Hospital
    4650 Sunset Blvd., Box 109, Los Angeles, CA 90027
    Phone 323-669-4658

    Blessings to all of you,

    Kristine Bunyan

  6. Phyllis says:

    im sorry that i didnt realize sunday you were having a tough time. maybe you should have came.. a chance to not care about the house.. just have fun with friends who care and leave all that for later.. my house is just now starting to look livable.. the first few years.. forget it. i told myself as long as i was being a good mom.. being the best housekeeper didnt matter much..

    dont loose faith.. be angry.. and ask why.. just know that God always has a reason why.. and you will pull through.

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