I held my wrist out and the nurse started cutting off bracelets. This one can go, lets keep that one on just incase … one by one they dropped to the floor. She rattled on about what I could and shouldn’t do, instructions for the medications the doctor had prescribed and follow-up appointments I needed to keep. As she came to the last bracelet she paused, squeezed my hand, put her scissors away and turned towards the door. I looked down at the bracelet she had left alone and saw the words “Bed 5” that had been smeared and had already begun to fade. I’m not sure if she left it on out of respect or if I would actually need it but whatever the reason this day would challenge my strength in a way I wasn’t sure I was quite ready for. After a long month in the hospital recovering from Elizabeth’s birth, battling sepsis and a series of infections I was being allowed to move across the street to a house that would allow me to stay close to my baby girl. Leaving the hospital that morning without her made me feel like that pile of hospital bracelets that had gathered on the floor at my feet. I reached down to my wrist and put my hand over the faded, worn one that she had left.
As new parents we would never dream of leaving our babies! That first overnight you leave your baby whether it’s with grandparents or because of the business trip your boss says is non negotiable is something we all have experienced. The list of instructions you spend days on, the bags you check and recheck, the worry that no one will do it exactly how you do which means that it’s being done all wrong! Now, let’s fast forward a few years and a second or third child … the countdown to that time alone with your husband started a week ago, you quickly grab a few outfits from the laundry basket full of clean clothes (at least you hope they are clean!) and leave the car running when you drop the kids off with a quick kiss and a shout out as you walk, a little faster than you should down the driveway about not letting them eat too much sugar or staying up too late! Oh you will miss them, you will be ready for long hugs and sticky kisses by the time you get home but everyone needs a break. This is what I hear every single time I take Elizabeth to the doctors, no matter which doctor. The question usually comes up just about the time that the doctor is looking in her ears, as if he doesn’t make eye contact with me it sounds less scolding and more like a conversation!
What have you done for yourself this week?
Well, I washed my hair; just once he asks …. yes I answer. Okay, what else he asks as he moves to the other ear, again making sure our eyes don’t meet, or maybe he was avoiding looking at my hair that I am sure we were on day 5 of not being washed! I’m madly trying to go through my week hoping I could think of something that would make him happy that I was taking care of myself. I sat in the car for an extra 5 minutes by myself after the kids had already gone inside; that counts, right? Ummmm wrong. As moms we spend so much time taking care of everyone else that we really do forget to take some time for just us. Whether you have a special needs child or not, this is just Parenting 101. But when you add a child like Elizabeth to the equation, time for yourself seems almost impossible. She is my 24/7 and that means any extra few minutes during the day are held for Caroline and Alex and then whatever is left after the kids are in bed, the house is dark and quiet is for Mark. Honestly, this is the time I wash my hair!!
I have written about the challenges Caroline and Alex face growing up with Elizabeth. I have lost track of how many times I have had to say “… just a minute.” Which really means I need 20 minutes and by then they are frustrated and no longer need me. Jumping in the car to run errands, grab dinner or catch a movie are extreme privileges and not the norm for our house. Getting us ready for dinner out takes hours of prep and there is undoubtedly someone crying by the time we all make it to the car (usually me) and we are so worn out that the drive-thru at Chick-Fil-A sounds really good at that moment. I have tried to take Elizabeth to the movies with the kids but there is only so many Junior Mints and Sprite that one child can consume and we usually only make it half way through the movie. Now that the kids are older and can babysit I try to take at least one of them with me on errands just so I can soak up some one on one Mom time. When Elizabeth’s dad made the decision to have “very limited time” with her he mentioned how important it was for him to have time with just Caroline and Alex. He talked of the struggles they encounter by having Elizabeth, the expenses of having to hire someone to watch her so he can spend quality time with his other children. The word “unfair” was front and center for most of that conversation. He wanted to vacation with them, enjoy a night out, spend the afternoon at the pool without the hassle of Elizabeth. I remember one of the attorney’s asking him to give me the same opportunity by taking Elizabeth so I could also have that time; when he said no that he would not agree to that I knew right then and there that any time I would want with Caroline and Alex would be far and few between and it would come at a great cost. I remember crying, not because of his selfishness, not because he was abandoning his role as her dad but because I knew that Caroline and Alex would suffer from his decision. I wanted to tell him he wasn’t hurting me he was hurting his children but it would have done no good to any of us, he had already given Elizabeth up.
We have had a handful of babysitters, nanny’s and caregivers and even less that I have actually trusted to care for Elizabeth. Not everyone is cut out for caring for a child with special needs. This I have learned the hard way. I want to believe when someone tells me they are excited for the opportunity, when they seem eager to learn and assure me they are up for the challenges that come with the job. I have had to lower my expectations and yet I still find myself disappointed. It’s not an easy job and I battle with asking anyone to take on a job that requires so many physical and emotional demands. I have found that it is easier to just do it myself and this is why Elizabeth’s doctors and care team are always telling me I need to take time out for Pam. As a giver this is something very hard for me to do. A character trait I inherited from my dad … always do for others, put others and their needs ahead of you and yours. In case you are wondering, this can wear you down; physically and emotionally and why I am always being encouraged to ask for help and accept it without guilt.
There are 3 full pages of instructions regarding Elizabeth. Feedings, medications, dressing, changing, bedtime routines. One entire page is dedicated only to the amount of medication she receives and the exact time, dosage and how to administer it. One missed dose, the amount given or if given in conjunction with another medication means an air flight to Children’s. Positioning in her chair is crucial to keeping her comfortable, preventing pressure sores and ensuring the rods in her back are protected. Feeding this girl takes hours out of a day with 6-8 feedings in a 24 hour period that consists of setting up the pump, priming, continuing all the while making sure a single air bubble doesn’t make its way into her stomach or else it’s all coming back out and you’re starting all over again. Changing Elizabeth is a challenge all in itself. Remember those days when you just couldn’t wait to never have to buy another box of diapers? I never thought I would be changing the diaper of my 14 year old daughter. In and out of her chair sometimes 8 to 10 times a day; that’s 100 pounds of lifting twice with each diaper change. Finding someone, asking them to take on all of this responsibility seems almost impossible and we won’t even talk about the cost of this type of care. I can do it all by myself for free is what I tell the doctors with confidence and a convincing smile they haven’t bought in 14 years!
When Caroline came to me and asked if we were taking Elizabeth to the beach with us I knew I needed to find someone to keep this girl for us. Caroline and Alex were desperate for some mom time and my confession …. I needed some me time. Time, not in between or left over time but quality time with Caroline and Alex. I needed to sleep more than 2 hours at a time, I needed a hot meal that someone else fixed for me and time to sit down without setting a timer to get up. Just typing it out sounds so incredibly selfish but Elizabeth’s doctor finally made eye contact with me asked how often I do this and I said … once a year for 7 days. He kept eye contact with me, focusing less on Elizabeth and more on me and made it very clear that if I didn’t start taking care of myself who was going to care for Elizabeth when I couldn’t? But who would ever want to take on a week with Elizabeth and all her needs? Who could I ask but more importantly … who could I trust? In Elizabeth’s almost 15 years I have trusted 2 people with her. One who moved on with her new life years ago and one who has a house full of Elizabeth’s, a growing family and the most giving and selfless heart I have ever met. I called her and cried for help. Within minutes she text me a name, a number and a glimpse of hope. I should have known God would provide the perfect person for our girl. Trust and doubt are two things God knows best about me! I’m not going to tell you that I dropped Elizabeth off that Friday afternoon and walked out the door without a little bit of apprehension but there was a calmness that followed me that day that is not a part of who I am.
We would be a long 12 hour drive and 1000 miles from her. It would not be easy to get home quickly should we need to. I had carefully packed her clothes, medical supplies, boxes of formula, packages of diapers and laid the 3 pages of instructions on top. Mark loaded up the lift in his truck as I rolled Elizabeth into the van and together we made our way to a house we would leave Elizabeth at for an entire week. This would be the longest I had left her and the longest anyone other than family had taken care of her. My heart began to beat a little faster as each turn we made brought us closer to her temporary home. She was happy, not a care in the world as Luke Bryan played through the speakers. I had told her about our plans not even sure she would truly understand what they meant until she figured out it was mom who was not putting her to bed that night. I was greeted by a woman with a face so familiar that I actually said …
… you look just like your sister!
We were leaving Elizabeth with one of my two that I trusted sister. (Did that make sense?!) Her name was Susan and I felt an instant connection. As Mark brought in equipment and introductions were made I began to go over the notes, showing Susan where everything was and answered questions she had. I met her husband, Jeremy and her sweet daughter Lindsay. Elizabeth immediately caught the attention of Lindsay and I knew she was going to have a good week. Elizabeth seemed relaxed in her new environment and I looked for more reasons to stay longer until my thoughts were interrupted by Mark saying it was time to go. And there it was, that familiar sting that has become such a part of my life. I hugged and kissed my girl, hugged Susan and thanked her for everything and as I shut the door behind me I turned, put my hand on the door and asked God for protection, patience, peace and thanked Him for the family that had given their hearts and their home to house a girl, her purple wheelchair and the sacrifices that would come with that.
Throughout the week Susan and I kept in touch with questions, comments and lots of pictures! I was missing my Elizabeth terribly but the time I was able to devote to Caroline and Alex was so precious. The rest I was able to get, the time I had to myself was invaluable. There were times I felt so selfish in enjoying this time but I knew it was so needed. I had to keep telling myself that this is only 8 days out of 365 and that it was okay. As each day passed Elizabeth became more comfortable in her surroundings and I came to realize that this family had been hand picked by God Himself. They welcomed her into their home, into their family as one of their own. They recognized her needs would be great and allowed God to work through them to ensure Elizabeth was well taken care of. Pictures of Elizabeth became pictures of Elizabeth and Susan, Elizabeth and Lindsay, Elizabeth and Jeremy.
It was the night before we were to leave and head home when I heard a text come through. I opened it and cried for the first time that week. Tears of love, grace and thankfulness for a family that a week ago I barely knew. There was a message saying that Susan’s teenage kids and their friends had decided to stay in on a Friday and was hanging out with Elizabeth. The pictures captured what Life with Elizabeth is all about.
Acceptance of those who are different, tolerance, understanding that these kids just want to be like everyone else. It’s a lesson in life that most adults still haven’t learned and here was a living room full of teenagers on a Friday night gathered around Elizabeth, making bracelets with her name all the while talking to her and brining her into their very normal world. There was no wheelchair, no barriers of communication … a choice was made to be the difference in the life of a very different girl and for one night allowed Elizabeth to be a normal teenager, hanging out, laughing and being a part of a circle of friends. Leaving Elizabeth became so much more than a vacation, more than time with Caroline and Alex and Mark; more than a good nights sleep and a hot meal. It was really for Elizabeth, it was exactly what she needed.