We have a cave in

I finally made the decision. Took the step. Whatever you want to plug in for what is going down – I caved in. Since Larkin was born, doctors and some family and friends have encouraged me to get accessible parking permission.

I have never wanted that because we are not handicapped. At least in my mind. I can walk with her and carry her most any place. She slides into her chair easily, and we move through life. That was three years, 39 months, 32 pounds, and still not walking ago. My body aches from carrying her. My shoulders and back are killing me most of the time, and yesterday I couldn’t look to the right very well because my neck would catch and spasm.

Beyond me, it’s more about her. Larkin’s red blood cells have grown larger, and we have to observe her blood. I love her Hematologist; he’s a self-proclaimed “zebra hunter” who will ring an alarm when something is amiss. But her hands and feet are purple/blue and cold even if we keep her inside. So yeah – did anyone notice the negative temps here in Illinois?
I make shopping decisions based on how close I can park. How cold is the weather, how close can I get, and how easily I get inside with her. Do we need to eat dinner cooked at home, requiring me to stop at the store or order in?

When I took her to Florida in December, we flew from the Indianapolis airport. I was forced to park in the garage and pay a high sum for the week because I couldn’t expose her to the elements and park in long-term parking. It was an OK deal because I valet parked the car and called from the runway, and they had the car warmed up and met us at the door, and she was in a warm car seat right away.

I broke down after this cold spell because it cramped our ability to live an active life. I called her Neurologist for the accessible parking application. Why does that make me sob? Why do I feel so defeated? I don’t know and will continue to ponder it, but I have to think of it in the same way I think and write all her requirements for babysitters, friends, doctors, and school – “In Larkin’s best interest and for Larkin’s safety.”

Mother heed thyself – for Larkin’s best interest and Larkin’s safety, I need the license plate with the little wheelchair.

Larkin is working so very hard to walk. Larkin’s physical therapist and aide have her inside a hula-hoop. Larkin holds onto the hula-hoop as she is guided along to walk. We want her to walk without our hands or think she needs our hands, and the hoop is fantastic for helping her realize she can do this. The hoop also gets her hands out in front of her instead of behind. Larkin’s body is like jello when we do this, but that stems from being sick for so long and losing over 7 pounds.

WHO KNEW? A hula-hoop?

As the weather changes and it becomes warmer, I will be able to park close and allow her to practice walking from the car to our destination. She will learn the routine and won’t be defeated by fatigue. Independent walking is the goal, but we are closer every day.
It’s the little things we like to hang onto because somehow, it makes us feel OK inside. We are not “different”; we are not “handicapped” ….. pride goes before a fall, and I can’t allow Larkin to fall literally and figuratively.

When the placard came in the mail, and I saw the wheelchair and the words PERMANENT I must admit I was undone for a long time. A broad space of grieving that must be navigated between knowing something in your head and SEEING it to become real life.   I caved in, and it felt terrible.

I will let this go in time, and my heart will stop yearning. It is OK, and life moves on, one shaky little step, with a belly binder, a walker, my hands, and a hula-hoop at a time. And when she does take those independent steps, my tears of feeling like I am caving in will become tears of joy.

So if I see someone waiting or parking in an accessible space using it as a convenience now, one may know how it feels to those of us who use those spaces and the grief surrounding it. Hence, the anger, because we never wanted this ~ it is necessary, NOT a privilege.



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12 Responses to We have a cave in

  1. Melanie Bates says:

    Ames thank you for sharing. I know how hard it is to want something and fight for something but in reality I don’t believe you did cave in. Larkin’s health depends on her ability to keep her body temp at safe levels. You are just doing whats best to keep her healthy. Your faith is amazing and you’ve been able to surpass many leaps and bounds and overcome many obstacles. This is just a stepping stone to get you to where you need to be. In order to care for Larkin you also need to be able to stay healthy and mobile so good for you for identifying the need for adaptations. It not always a bad thing sometimes it becomes a god send and in time you will see that you can only grow from this. You and your family remain in my daily prayers as well as the other families that you advocate for. I continue to read up on Zoey and lift my hands in prayer to the courage and strenth of both her and her family as well as yours. Hugs to you all and Amy thank you for sharing the many stories of faith and courage!!!!

  2. Meredith says:

    Hey there, you’re not alone! I broke down and got a handicapped tag after getting E’s wheelchair. Something about hauling her 30lbs, Brianna’s 22lbs, and Micah’s 25lbs through the parking lot where I always was carrying 1 and pushing 2 in 90 degrees in FL… that did it for me! Plus, I now drive an E350 and in the handicapped spots I can actually push the stroller up next to the car to load/unload and not have to worry about leaving a child behind my car in the road to unload the other (that’s AWFUL!!)…

    Great idea on the hoola hoop! I’ll have to try that with Micah 😉 He’s SO close to walking…

  3. good for you! It took me 6 years, 43 inches and 48 pounds to finally cave. We just got our Handicap Parking Permit this December. I actually felt guilty but he is just getting too big for me and I was afraid I would slip on the ice and drop him. Sam just started walking recently but still requires tons of lifting and is really not all that steady yet. We really can’t take him to a public place without his wheelchair. Anyway… I hear you… my back hears you… my aching arms hear you. I have to say that has been so nice to have enough room to load and unload him. I will admit that when we are all together as a family my husband and I usually still park way in the back because I am sure that there are those who need the space more than us (I agree with you… we are not handicap)… but when I have the 3 boys alone the realization that my child is physically out growing me is painfully clear I am thankful to have just a wee bit of extra space… if only for the peace of mind that there is a place for everyone to wait safely in the parking lot while everyone is unloaded. So… Good for you sista and good for Larkin too.

  4. PB says:

    A lot of people who have those plates/stickers are not handicapped in the way that you think. No wheel chair or walkers. Some of these people have high blood pressure and difficulty breathing when walking long distances. The need to park close because it is safer for them to do so. The wheelchair symbol has become a symbol for all those who need a little help in those parking situations. Here is the real question: will you use the handicapped parking spot when you don’t have Larkin? Of course not. You need this for the safety of your child and for a little extra help for yourself. No self pity – reality is here and you need the little extra help. Smile.

  5. Ann O says:

    guess what–show the handicap parking sticker at Carle when you leave the parking garage and you get free parking…

  6. Zoey's mom says:

    May be visiting this exact issue myself when we are over the “latest”.Mark has mentioned it a number of times but for what ever weird psychological reason I keep dismissing it.I’ll get there.got to.Walking is way off in our future and since Zoey has decided to pack on the pounds with chemo,who would have thought,treks become a bit harder.We are good for now.Public outings are out for a long,long time as well.As for the walking .. those steps will come and they will be magical and all the tears will have been worth it and Larkin will walk,Larkin will run and Larkin most certainly will fly!

  7. Ecki says:

    Don’t be too hard on yourself. It’s for the health and safety of your child and that’s all that matters. As soon as Kayla was able to walk, we got a handicapped tag for her. It’s not safe for her to walk long distances in the parking lot since she’ll either run with no concept of danger or do the stop, flop, drop. If she’s in the stroller or if there’s a shopping cart nearby, I generally don’t use it. But it’s there if I need it.

  8. I know how you feel. Even now sometimes people look at me funny because they see that I’m not handicap. But carrying around a three year old, his oxygen, feeding pump, and diaper bag is not an easy feat. Do you have any pics of Larkin? I would love to see her. And by the way, I love that name for a girl, its adorable.

  9. Leighann says:

    Do what you can, don’t sweat what you can’t, and don’t be afraid to ask for help when you need it.

    Don’t consider this a set back. Think of it as a little extra help to make life a little easier.

    You may not use it forever or you may realize that it takes an incredible amount of burden off of you.

    But accepting this bit of help does not define your caregiving or mothering ability.

  10. Ami says:

    Don’t consider this a cave in, it is an adaptation…you are doing what is best for Larkin’s health as well as your own. Larkin will walk, in her own time but this really isn’t about that it is about keeping her healthy and you healthy. You are a terrific mother which is why you are willing to adapt and accept help in any form. Quit being so hard on yourself, Aim, I know you aren’t giving up your dreams for Larkin…you just helping her to stay safe and healthy.

  11. Brigitte says:

    Good for you Amy!! You are doing what is best for your beautiful daughter! Adapting to the situation is what you do. It’s what we do. You do it much better than most however.

  12. Lisa says:

    I have aching arms, too. Some days I can’t feel my arm from my shoulder to my wrist. Add the sore hip and wrenched neck, and you’ve got one achy body…not to mention the associated heavy heart. You are not alone. I have never considered the handicapped hanger for the car, but I am going to look into it. Even once Bridget is walking, it would be nice for all the reasons Ecki mentioned.

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