Another Halloween has come and gone and needless to say, Harps and Shae were up for the excitement. Literally as soon as they woke up, Harps says “Mommy, it’s Halloween”. Almost as if I had suddenly forgotten and life would end if I did not make plans for them to go out and collect their candy haul for the year. A few weeks back I asked both Harps and Shae what they wanted to be this year. Harps initially told me that she wanted to be a princess. I figured that would be easy since we already have two or three dresses already that they wear when they are playing make believe so I mentally checked that off the list. As for Shae, she indicated that she wanted to be a skeleton. Can I just say that it was really quite interesting to have two kids, twins at that on opposite ends of the spectrum. Although what did I really expect, I mean, Harps is right handed and Shae is a leftie. Harps like candy and anything sweet and Shae prefers crunchy and salty. It was just bound to happen.
So we fast forward to Halloween and I promise the girls as soon as I get home from work, I’ll get them dressed and both daddy and I would take them out, as we had every year since they were two years old. So if I hadn’t mentioned in previous posts, I work in New York City, and just so happened that by my job was a pop up Halloween costume shop. I went in as soon as they opened looking for princess gloves, since I figured that would set Harps costume off, especially since I had found a cute skeleton pajama set at Carters for Shae to wear. Though when I went inside, I found the cutest Alice in Wonderland costume marked down to $10 from $40, so not only did it get my shopping fix in but I knew the Harps would love it.
Now double fast forward to the night of Trick or Treating. I got the girls dressed and we all made our way out into the neighborhood. Needless to say that the biggest observation of the night was that Shae did not want our help to do anything. She used her forearm crutches, but for the most part, did not want help navigating the steps or even the sidewalk. Normally, she would feel most comfortable holding my hand but she didn’t want that either. We were so proud of her and I feel thankful everyday that she is growing into her own and becoming more independent.
So what’s the biggest challenge now? Keeping them from asking us 20x or more a day for candy! LOL!
It wasn’t until a few days ago as I was casually sharing my experience with some co-workers I have that I realized that today was a special landmark day in my blog writing experience. It has been one year since I decided to start documenting my life raising twins and sharing the ups and downs of having a child with a special ability to boot.
Since my last real post, and I call it real because lately I have only been pulling up the shade ever so slightly to give you a peek into where we are in our lives, so much has changed. Now that Harps & Shae are 4, their little personalities have developed more than ever and with it, its own set of triumphs and challenges. For instance, the Harpster (or Harps or even Harpie), I have found to be a natural leader. She loves to give her opinion and can border on being a little too bossy. Both the hubs and I are constantly trying to reign that in, because not only do you want to nurture her natural gifts and talents, but you also don’t want her to turn out to be some looney tune that can’t understand another person’s side of things. On the other hand, there is Shae, who is one of the most determined little girls I have ever met. She is what I like to call the person who has never met a stranger and literally if given the opportunity will talk you out of a paper bag. I love that her personality is so outgoing and I constantly pray that she maintains this attitude as she moves through life. Her light is super bright and I’m really thankful that she chose me to be her mom.
So where are we taking this blog from here? I’m going to continue to give tips and updates on how the girls are doing. My hope is that you are able to pick some knowledge out of this and know that everything in life is a tradeoff and not all days are going to be great, but for the most part, with a little prayer, some planning and a positive attitude, there is nothing that will be too hard.
“Fear begets fear. Power begets power. I willed myself to beget power. And it wasn’t long before I actually wasn’t afraid.” – Carolyn Strayer from the book “Wild”
I want my daughters to know this, believe this, feel this, love this, so that when they reach an impasse in the road, they can cross it confidently. I’m still working on my journey but am thankful that I can show them both through my actions what this is and means.
Yesterday I witnessed my daughter hit a mental, emotional wall and it was one of the hardest experiences for me. The intensive physical therapy that we have Shae in is extremely challenging as it requires her to work numerous parts of her body all at one time. So it is not simply balancing on a ball or learning to walk up stairs, it’s balancing on a ball, while putting pieces in a puzzle, forcing her to use her core, legs and arms for stability. Everything that is done really forces her to put her best foot forward (no pun intended) and meet the challenge head on.
Thus as Ms. Amy, her PT for the day was asking her to go from kneeling to standing, I saw Shae literally fold over and crumple to the ground in tears. Generally speaking, Shae’s coping mechanism when faced with a challenge that she does not want to face is to act silly. She will try any distraction, from goofing off to not listening or following through on instruction, only this time it was different. It was straight unadulterated tears. I had never seen her react that way before and for me, I went into internal dialogue mode, “Shaneka don’t coddle her”, “Shaneka you must encourage her, cheer her on”, “Shaneka, she can’t get her way in this and this still needs to be seen as positive – I mean she’s only a mature 3 year old right?”. I knew what it was like to hit a mental wall. I ran a 13.1 mile marathon years ago and understand how your mind can trick you into feeling like you cannot do it. The very first mile I ran, I cried because I never thought I could do it, so I totally knew where she was coming from.
So with my internal dialogue was going crazy, I’m telling her to push through it, and fight, pleading with her to use her words and tell us what is wrong. I had Harps come over and try to encourage her, hold her hand, tell her that she would do some exercises with her. I ran and got her a tissue and we halted the session so that Shae could collect herself. After about 20 minutes of encouragement and coaching, we got her on the treadmill for 5 minutes and it was considered a win for the day. With another session on deck today, I’m praying that it is more positive today than it was yesterday. Wish us luck!
Have you or your child ever experienced a mental/emotional roadblock and how did you work your way out of it?
One of the many visits that my daughter has to do on an annual basis is a visit to the Nephrologist. At the time, I had no clue what that was or what they did until we got there and I found out that they are a type of specialist that looks after the health of your kidneys. In Shae’s case, her doctor will monitor her kidney function as she gets older to ensure that for the duration of her life her kidneys are healthy and functioning properly. As a result of the nerve damage from Spina Bifida, her bladder has a tendency to hold urine to a certain point, without release, which could potentially cause “reflux” (similar to acid reflux) that could potentially damage her kidneys. Depending on the level of the where the persons nerves are damaged will determine just how badly the bowel/bladder function is and how it is managed.
Thankfully for Shae, she does suffer from this to a point, but fortunately is able to void without being catheter for continence. Her main issue is that she is not aware when she has to do #1 or #2. So we have to take preemptive measures in order to ensure that she is what society deems “socially continent” and put her in a position where we avoid horrific, embarrassing moments at all cost.
I have taken care to safeguard Shae’s modesty.
From the image, you can see that she is hooked up to two types of probes for her VCUG study that she generally gets twice a year. Once probe measure bowel pressure and the other measures bladder pressure before release. The study works to measure how much liquid her body can hold before the bladder contracts. For Shae, this process is uncomfortable since she does have some “feeling”, though I will say that as uncomfortable as it is for her to go through the process, it gives me hope knowing that she may one day get to a point where she can sense what is going on with her own body.
The study also gives you further insight into the planning phase of keeping your child socially continent and by using the information, you can work with both your nephrologist and urologist to formulate a personalized plan to keep you child from having accidents.
My hope is that this take some of the nervousness and scare out of the process and will help other families with kids that have SB or similar issues who need to do this type of study.
As the parent and/or caregiver, YOU are your child’s best advocate. In my experience, there will be instances where “experts” tell you what they think is best for your child really not taking into consideration his or her specific needs and it is important for you to know what you want and be able to express it in a way that gets you what you want. The way in which I advocate for Shae is by keeping meticulous records and making sure that I have enough professionals in my corner (i.e. pediatrician, PT, etc.) that will vouch for your child and their level of development. If you are a new parent with a special needs child, ask for all of your child’s medical records. Generally, if you see a particular specialist, they will send any notes and/or tests to your pediatrician, so you can for the most part gather everything in one place. Once you have copies, find a place to scan everything in – many times it is quicker to email it to a new doctor, specialist, school, camp or whatever faster than relying on the doctors office. Also, if you are applying for any government aid, it is easy access and for the most part in chronological order making it really easy to use.
Do any other parents have tips for how to successfully advocate for your child?
I went to pick up the ladybugs yesterday from pre-school and Shae’s teacher told me that she did not eat lunch, have her snack or want to play that day which is really unlike her. I looked at Shae sitting in her chair looking pitiful and asked her what’s wrong. She says “Momma, my knees hurt”. Well the first thing that flashed in my mind was “I hope that she has not banged up her knee caps and we have to go to the ER”, as crazy as that sounds, when you have a child that has legs that are somewhat delicate, any reference to a limb could equal a series of visits to the doctor.
Thankfully, once we got home, I took Shae’s temperature and sure enough she was running a low grade fever of 100.7. I knew that the best plan of action was plenty of fluids and a little children’s Advil. She made herself a little spot on the floor with the living room pillows and a blanket and burrowed underneath them. It was funny because not even Harps could find her under there. In retrospect, it really is hard to keep twins apart when one is sick since the other always wants to play. I made a mental note to come up with things that both girls can learn to do on their own, since instances like this could come up where it is hard for them to just go somewhere and play by themselves.
After dinner and a little encouragement from me asking Shae to move her bed from off the floor, I was able to get her on the couch. So get ready people because cuteness overload is about to happen in 5…4..3..2..1. Harper tucked Shae in and went in their room to grab her absolute favorite Cabbage Patch doll – Cashi, along with all her friends. It was the cutest and nicest gesture I have seen Harper do. Generally, she does not want anyone messing with her “dollies” and makes it a point to keep them on her side of the room, so this was a big thing for her.
I know that the blog has been missing in action for a while and needless to say I have been dealing with a few setbacks since my last post. The truth is, I have been suffering from “situational depression” and it is super hard for me to write that. Particularly since as a black woman, I was taught at a young age that you are expected to be “the rock” of your family. Come hell or high water, it was MY responsibility to hold it together. I am expected to take care of Harps and Shae, be a dutiful wife and hold down the family all while working a full time job. I literally have not seen my friends in months and most of my days I felt like I was fighting to get even a moment of peace to myself between the girls and my hubs. I was overwhelmed, annoyed, feeling like a failure “for not being able to hold it down”, and was feeling overwhelmingly alone in the whole deal.
What’s funny is that not many people knew what I was going through (not that I’m great at telling people – guess they will know now). It was around November that I realized that my moodiness was not just a “case of the blues” and that I really needed to seek some professional help in order to get my self together. I know that my family life will be a lot better when I am happier and I am taking the steps to make that happen. What you might say? By reaching out to my friends, telling the hubs when I need time for myself and working with my therapist. To all the moms and dads out there that can identify with my story – what things have you done to get past this?
I made this sweet picture for the start of the Holiday season but was so crazed with life things, that I totally forgot to post it! I didn’t want it to go to waste so enjoy the ladybugs and all their cuteness! I actually hired a photographer on Groupon to come to my house and take shots of the girls. It cost me around $80 at the time, but was well worth it. I would recommend this anytime over a Portrait studio. Have a great night!