Let’s Talk About Guilt

I’ve written about it before. I see it mentioned again and again on social media. I think it is time to revisit the topic. Almost two years (Charlie is 23 months today!) into my preemie parenting journey, I continue to have lingering guilt. I know I shouldn’t feel guilty but I continue to do so. At this point, I realize the logical part of my brain and the emotional part of my brain do not coordinate with each other. I can know something but feel something completely different. My guilt exists due to those darned emotions that won’t listen to reason. I feel guilty when…

• I meet a mom whose baby passed in the NICU. I know how easily that could have been me. It is simply by chance that our situations are not reversed.
• I feel  frustration, hurt, sadness, anger, etc about Charlie’s delays. I know there are parents who have bigger challenges and would love to be in my shoes.
• I react irrationally due to some deep-seeded hurt, loss, sadness, or frustration. The guilt is immediate after I snap at someone.
• I am jealous or envious of another parent. I wish I was better than such pettiness.

I feel guilty because…

• I feel like I failed my husband and Charlie in some way. Even though I know better, I feel like all this is somehow my fault.
• Charlie has a very good chance of catching up eventually. I know many parents aren’t so lucky.

I don’t know at what point the guilt will begin to lift. I can hope it will eventually.

Grief Doesn’t Bring Out The Best In Me

I’ve made an observation about myself. There are parts of our preemie journey that continue to fester like raw wounds. I can say, without a doubt, grief does not bring out the best in me.

Out of the blue, I was rude to someone after the preemie play date the other day. I am not proud of it.

As we preemie moms prepared to leave, another group of kids and a mother entered the play facility. I was struggling to put on Charlie’s socks. Frequently, one or all of her toes splay in an odd direction and they catch on the sock. I said to the other preemie moms, “If any of you have any tips on putting socks on spastic feet, I’m listening.”

After she eavesdropped, the new arrival non preemie mom incessantly babbled about her choice not to wear socks and to wear sandals. At least, I think that was her point. I wasn’t really listening. I was busy biting my tongue.

I wanted to yell, “Shut up, just shut up! Do you know how hard it is for us to find shoes to fit her tiny feet, hold her orthotics, AND provide the needed support? I wish she could wear sandals! I wish I didn’t even have to ask for sock advice!”

Instead, I was blunt and rude with my reply, “That won’t work for us, she has spastic diplegia.” That was my way of ending the conversation. I, immediately, felt ashamed afterwards for snapping.

My terse reply was not really due to anger. Nor, was it directed at that random mom. I was envious the woman got to dress her kids in cute sandals. I wanted to do the same. Additionally, I was saddened that Charlie is going to be two very soon and is still having issues. Mostly, my rudeness was due to grief.

Another example of this occurs anytime I visit or discuss Charlie’s first NICU (the open NICU). I cannot objectively discuss or visit that place. I am bitter towards it.

I’ve been asked by different organizations to volunteer in the NICU. I would love to help out but, I decline every time. While I can visit the hospital with no problems, the NICU is a different story. It sends me over the edge.

I become extremely irritable and upset by everything about the NICU. I know it’s not logical but it’s how I feel. However, I don’t have a problem with other NICUs. Just that particular one. I suppose it extracts grief I still harbor over my losses.

How do I handle these moments? Not very well. Nevertheless, I have come up with an idea of something I’m going to try in the future. Rather than get worked up or curt, I’m  going to take a breath and say, “I’m not ready for this conversation.”

Yes, it does sound like an odd thing to say. Especially, if it is a non sequitur (as it would have been if used in the sandal conversation). However, those who matter will understand. Besides, I’d rather be weird than unnecessarily rude to strangers.

This weekend, Charlie rode the Metro for her first time. Here she is with her dad.

 

 

 

 

 

Three Great Sources To Find Toys For Kids With Special Needs

Charlie’s second birthday is approaching quickly. For the past few months, I’ve been on the look out for birthday gift ideas. Buying toys for Charlie is tricky. I suspect it is for many kids with special needs. Every child is different. There are different abilities, interests, therapy goals, and needs. In Charlie’s case, size is an important consideration. Here are three sources that have been helpful with generating ideas:

1)Toys R Us Toy Guide For Differently-Abled Kids: I’ve used this to find ideas for the past two Christmases. In addition to the online copy, they have a hard copy in the store. This handy guide is a great starting point from which to shop or build ideas.

2)Discovery Toys Special Needs Toy Guide: A Discovery Toys Educational Consultant was at the most recent March For Babies we attended. The display toys intrigued Charlie and were the type of toys she generally enjoys. At home, I looked at the website for possible birthday gifts. During my search, I found out the company has a special needs guide which I found helpful.

3)Go Baby Go! : Today, I discovered Go Baby Go! It is a project at the University of Delaware that adapts motorized toys for kids with special needs.

I took Charlie to the USA Science and Engineering Festival. I knew, going in, that it was going to be extremely crowded and Charlie was too small for most of the interactive exhibits. My main goal was to collect science themed coloring books, story books, and activities (like paper airplane kits) that we could do together at home.

After walking through row after row of exhibits (and having to explain that Charlie was older than she looks as I collected coloring books and paper airplanes for what people thought was a baby), Charlie let out a squeal. We had come across an exhibit with a ride on toy.

The lady working behind the exhibit table asked Charlie if she liked it. Charlie smiled and clapped as I explained (for what felt like the millionth time) she was older than she looked. The lady responded by asking Charlie if she’d like to ride on the toys. To Charlie’s delight, the lady helped her ride both of the toys in the exhibit. I found out about the project and their amazing work afterwards.

Two Down, One To Go

With March For Babies season in full swing and a couple other things going on, I’ve been busy. Today, Charlie and I walked in the Augusta County March For Babies. It was beautiful morning and fun walk. This was the second of three walks we are helping out with.

Our third and official walk is at the end of May. It will be an emotional walk because it is two days after Charlie’s second birthday.

I hope the weather is as nice as it was today.

 

 

Preemie Play Date

Today, Charlie had a play date. The play date was organized by my preemie parents’ group and consisted of former preemies. I love these rare opportunities.

The initial appeal to these events is the benefit to Charlie. She gets to play with other kids who struggle with some of the same things she does. Her small stature is not unusual nor are her delays. It is an opportunity for belonging.

However, I forget that I receive an enormous benefit as well. I listened to another mom talk about her child’s difficulty with feeding. I sighed. While I was sorry her child was struggling with feeding, it was so nice to have someone understand. We shared names of specialists and talked about our children.

It was time well spent. Time I desperately needed.

I encourage other preemie or special needs parents to find similar support. I realize I am fortunate to have a group so close to me. For those of you who don’t, Urban Flowerpot has written How To Start A Preemie Support Group.

I will do my best to attend and keep the group going. Today, I realized how important preemie play dates are for me and not just Charlie.

 

 

The Week of Hand Me Downs And An Update

The women in my moms’ groups are generous with the hand me downs. Charlie has received many of them during this past week.

This is the stroller liner given to Charlie from Judy at Laughing, Living, Weeping. Charlie likes the neck support in that position above her head. It fits Charlie well and is excellent support for the long stroller rides. We tested it out Saturday during a hike.

Charlie received this sand box over the weekend. Initially, she had a tough time with the feel of sand. But, she loves it now that she is able to tolerate the texture.

Today, Charlie got her car. So far, she has only figured out how to make it go backwards.

Thank you to the women who have passed these toys and the ride on toys to Charlie. They help further her skill set and growth.

With the holiday, the warm weather, and the upcoming March for Babies, our schedule has been fuller than usual (not a lot of time for writing). For those of you interested in the ongoing details of our story:

Charlie continues to be under observation for the changes with her muscle tightness. An appointment has been scheduled with the developmental pediatrician to discuss the matter further. It is most likely due to a growth spurt.

Also, she has an appointment with the pediatrician to check the fluid in her ears this week. Tubes may be a consideration in the future.

Additionally, the area’s March For Babies is getting closer and closer. I am happy to report that Team Charlie has made goal. However, if you’d like to help blow it out of the water you can do so by donating at our team page.

Other than all of that, we keep plugging along.

 

 

 

Happy Easter!

Charlie had her very first Easter egg hunt today.

   

I’m Not A Doctor But I Play One When I Call The Pediatrician’s Office

For a couple of hours last night, Charlie screamed in pain. Other than when she was rehospitalized, I had not heard her scream in pain and it terrified me. She didn’t pull at her ears, touch her head, gnaw on her hand, rub anywhere on her body, nor provide any clues to what the problem was. There was no fever.  She simply screamed hysterically.

I spoke with the on call doctor last night. I explained how Charlie had behaved unusually through out the day and it culminated in the screaming. We discussed if and when she needed to be seen in the ED. The doctor suggested ways to remedy the pain and get her through the night. She explained that it is a tough situation to figure out without examining Charlie. Furthermore, she recommended that Charlie be seen in the office the next day (today).

This morning, I called for an appointment. The office staff asked, “What does the child have?” I answered, “She’s been screaming in pain. I don’t know the source.” The office staff suggested, “It is her ears then?” Frustrated, I took a deep breath and said, “I don’t know. It could be her ears, her stomach, or any other number of things. My baby is in pain and I need help figuring it out.”

“Ma,am, what do you think the problem is?” was the response. Was this a mind game? If I knew, I wouldn’t need help figuring it out and fixing it. The office staff once again suggested that it was the ears. I relented, “Fine, it’s the ears.” At this point, I would say anything to end the conversation that was going nowhere.

She provided me with an appointment time for this afternoon and I promptly hung up. I’m not a doctor but I’m expected to be one to schedule an appointment.

Extreme Parenting

Last night, I had trouble sleeping. I have been feeling overwhelmed lately. It’s not due to a busy schedule. I don’t feel stressed by the volunteer commitments or social events. I have no problem saying “No” to those if they become a source of stress. I’ve been overwhelmed by Charlie’s medical care. The things I can’t say no to.

Late last night, I jumped on Twitter and commiserated with another micro preemie parent (the author of Handpicked Miracle).  I told her how I dreaded the next day’s appointments. How I have nightmares in which I argue with insurance companies, drive to the wrong appointment,  or pay fees for missed scheduled appointments. I try the best I can but, I still drop the ball such as in the situation with the glasses.

She responded, “i know. i get it. its so hard to keep up with EV.ery.thing. Being a parent is nonstop but this is so much more thn that” She’s right. Those of us with extreme preemies (and special needs children) are drafted into the sport of extreme parenting. 

In Charlie’s case, if we aren’t headed to an appointment, then I am trying to solve an issue. What hoops do I have to jump through to get something covered by insurance? Why is she still formula dependent? Why are her neurological manifestations more prominent recently? Why did her sensory issues become more problematic? Why hasn’t this billing error been fixed? Did that doctor’s office send that order? And, what is going on with her ears?

With the age of two not much more than a month away, we are so close but yet so far.

Extreme parenting feels like a grueling race where the finish line keeps moving ahead.

Yes, during the last few days I’ve been struggling. I’ve been weary, exhausted, and thought, “How much longer must this go on?” I feel guilty for feeling this way because I know we are the lucky ones.

Tonight, I arrived home after another very long day. Once things settled down, I opened a package that arrived in the mail. My friend whose baby recently passed had sent Charlie an adaptive stroller insert. Enclosed along with the insert was a giant fuzzy Easter duck. Her caring gesture and thoughtfulness stirred me.

It gave me my second (or is it third, fourth, or fifth) wind.

Anyhow, I don’t care how far ahead that finish line moves. I can do this. I can run this race forever if need be. I have the very best friends and people rooting for us along the way.

I am an extreme parent who is fortunate to have extreme friends. Sometimes, I just need to remind myself of that.

Not the best picture but this is Charlie and her new duck before bed.

Full Steam Ahead

This morning’s post is very brief. This week has been non stop with Charlie’s regular therapy compounded by appointments and activities.

For example, today, we are headed to music therapy topped off by a near sprint to an appointment with the ophthalmologist. I’m dreading the ophthalmologist appointment.

Charlie’s right eye has been pulling more to the center when she attempts to focus on things. I suspect I’m in for a lecture on the importance of making her wear her glasses. I know it’s important and I could do a better job ensuring she wears them. However, these lectures leave me discouraged with the realization of how tired I truly am.

Now, I have to suck it up and face the music. I have my fingers crossed that today does not hold any surprises.

Charlie helps select a ball at last night’s Bowling For Babies event.

A Proud Mommy Moment

Today, Charlie and I attended the first of three walks we will be helping with in our area. Our official walk with our team is on May 31st. (It is not too late to support our team!)

Prior to the walk, I prepped Charlie’s stroller for the six mile course I planned on walking. It will be a little bit before the adaptive stroller insert arrives in the mail. In the meantime, I cut up a pool noodle and created a booster seat with body support. It is somewhat of a hassle but will work until the insert arrives.

The early morning weather before the walk was chilly. Because of this, I left Charlie bundled up in her stroller and pushed her around.

After the walk started, I put Charlie’s blanket and coat in the stroller basket. Charlie “talked” to me the entire way. It turned out to be a lovely sunny morning.

I am proud to say we completed the walk in a respectable amount of time. Although, my body could tell that I was no longer pushing a little six pound baby up those hills.

Following the walk, I helped Charlie out of her stroller. She wandered aimlessly and tumbled through the grounds as she munched on pizza. I trailed behind her while she said hi and flirted with the people she encountered.

We passed one lady who said to me, “That is not the one pound baby is it?” I replied with a smile, “This is Charlie.” She explained that she thought one pound babies wouldn’t ever be able to walk.

That was my proud mommy moment. Charlie proved her wrong. I beamed.

It hasn’t been an easy road for us. Sometimes, I wonder why it hasn’t been as easy as it was predicted to be when she left the NICU. Why didn’t she fulfill the super preemie prophecy?

Today, instead of having to explain why Charlie can’t do some things yet, Charlie showed someone what she can do. And that moment, made every bit of the struggle and all the work worthwhile.

 

Special Needs Parenting Merit Badges

Today, I modified Charlie’s stroller for tomorrow’s outing. (I’m still waiting on coverage for an adaptive stroller.) When I had finished the upgrade, I was pleased with myself and thought, “I’m getting pretty good at this.” I was reminded of another blogger’s post written about Motherhood Merit Badges. I think there needs to be Special Needs Parenting Merit Badges. This is what I would include:

MacGyver Badge: For the parent that can, at a moment’s notice, fashion adaptive equipment out of items on hand. Be it feeding equipment, mobility devices, or anything else normally special ordered… If it’s not readily available, this parent can make a working version for temporary use.

NICU/ Hospital Expert: This is the parent that knows the best places to eat, quietest hospital lounges, quickest way to the NICU/pediatrics from the parking garage, alternate hallways in the hospital to avoid crowds, available resources, every hospital and NICU policy, the names of every other long term NICU/peds parent, the on call rotation, and best times to visit. This parent is usually more helpful than the hospital staff.

Automatic Denial Victor: This badge is earned the first time a parent successfully appeals an automatic denial.

Red Tape Guru: Parents who earn this badge have successfully applied for durable medical equipment coverage, insurance reimbursement, Medicaid waivers, and/or other state and federal programs.

Office Staff Diplomat: This badge is earned after repeatedly dealing with incompetent medical office staff and yet remaining cool. These parents are masters at getting what their kids need despite confrontation with ungracious office staff.

Honorary Nursing: Parents who learn what are otherwise considered nursing skills earn this badge. Feeding tube maintenance, injections, and airway maintenance are a few of the skills encompassed by this badge. Included in the badge is all the jargon, esoteric language, and knowledge a parent has to learn about their kid’s medical condition.

Impromptu Therapist: This parent is always inventing ways to incorporate every day activities into speech therapy, OT, or PT.

IEP/IFSP Whiz: No obstacle, school system, or official stands in this parent’s way. They know how to quickly and easily obtain appropriate accommodations  at IEP/IFSP meetings without breaking a sweat.

Which badges would you earn? What badges would you add?

 

I’ve also made a bingo game of the above badges.

Out Of Left Field

Last week, Charlie’s peripheral manifestations (muscle spasticity in arms and legs) intensified with seemingly no rhyme or reason. At first, I wrote it off as a bad day. I thought she may have been tired or it was the result of a growth spurt. However, it continued over several days. When Charlie chose to crawl rather than walk yesterday, I knew there was more to the issue.

During our outings last week, Charlie carried her arm curled up against her chest and dragged her right leg. I am used to seeing that when Charlie is stressed or tired. It was unusual to see it consistently throughout the day. The following therapy sessions, I asked her therapists for insight. They were as perplexed as I was.

Charlie was her usual happy self despite her body’s betrayal.

The unusual posture and gait continued through the weekend. At yesterday’s speech therapy, I noticed Charlie hardly used her right arm. After therapy, Charlie chose to crawl rather than walk.

I was baffled. She felt poorly enough that crawling was the best option. Yet, she was as pleasant as usual.

Over the course of all this, I exchanged emails with her developmental pediatrician (the clinic is two hours away). We discussed whether or not she should have an MRI. Little kids like Charlie need to be sedated so the imaging involves more complexities than merely an MRI.

With the MRI question in mind, I took Charlie to her regular pediatrician this morning. Based on past experience, Charlie does not communicate when she is ill. I wanted to rule out illness. Additionally, I had more questions that I knew the pediatrician could answer.

Lo and behold, Charlie has another ear infection. There was no fever, no screaming, no stuffiness, nor cough. Nothing to indicate she was sick other than the sudden onset of motor symptoms.

This may be how Charlie tells us that she is sick. I have my fingers crossed that the ear infection is the reason behind all of the changes. Time will tell whether an MRI is needed.

Just when I felt like I was getting into the swing of things this latest issue came from nowhere. One thing is for certain, Charlie keeps me on my toes.

 

Weekend At Morgan’s

Charlie played the drums while boosted on my knee.

My college friend, Morgan, recently moved to Delaware. Since her relocation, I had promised to bring Charlie to visit her. With the way our schedules worked out, this weekend was the chosen weekend. The journey forced me to confront some complex emotions because Morgan is twenty five weeks pregnant.

Prior to the trip, I had expected it to be hard. The twenty fifth week was the last full week that I carried Charlie (she was delivered the morning she reached twenty six weeks). I expected to feel envy, jealousy, and a little sadness. But, being with and supporting my friend was more important than any little uncomfortable twinge of emotion. I swallowed back my reservations and braced myself for what may come.

I like the expression on her face in the reflection on the glass.

Surprisingly, I didn’t need to worry. All I felt was excitement and joy for her. It was precisely the way I felt towards pregnant friends prior to Charlie’s birth. Another sign I’m moving on in life.

The visit was a lot of fun as they usually are with Morgan. She accompanied Charlie and I to the Please Touch Museum in Philadelphia. The museum was an amazing place for Charlie to explore and play. I think her favorite part was the hundreds of rubber ducks on display in a long case.

Additionally, there were several play areas exclusively for children under three. Because of Charlie’s small size and physical delays, designated toddler areas are the very few places in the world where she can explore and play independently. It was wonderful some of the toddler play areas had staff to ensure only those aged three and under utilized the space. Some of the other designated toddler areas did not.

The difference was obvious.

It is frustrating when older (far exceeding the age limit) and much bigger kids enter areas designed for little kids. This defeats the purpose of a toddler play area. Because the older kids are bigger and play rougher, they endanger the little kids by knocking them over, jumping on them, or stepping on them. However, this problem isn’t limited to the museum. Sadly, it occurs in just about every unsupervised toddler spot.

But, I digress.

After we explored the museum, we returned to Morgan’s house in Delaware for the evening. Charlie showed off her farm animal noises before heading to bed. Seeing a friend is always good but, I can’t wait to meet Morgan’s little one.

A Different Kind Of Needs

Sometimes as parents, my husband and I forget about special issues involved in raising Charlie. They become our normal and we forget that they are not part of everyone’s baby experience. This week, I’ve noticed it more than any other point in time.

Earlier this week, one of my husband’s friends had a baby. My husband was excited and tried to think up the perfect newborn gift. His eyes grew wide and sparkled as he exclaimed, “I know! I will get him a case of those nose sucker things!”

I very gently had to remind him that his friend’s baby will probably not, at any point, be fed through an NG tube. Nor, will the baby have reflux through the nose past age one like Charlie. His friend would likely appreciate two or three of the nose suckers at the most. He paused and said, “Hmmm, you’re right.” and shrugged it off.

Up until that moment, I don’t think it occurred to him that Charlie had different needs than most babies. Or, that his parenting experience had been so different from the norm.

Fast forward to today. This morning, Charlie and I attended a fundraising kick off. Afterwards, I decided to use our Harpers Ferry pass again before it expired tomorrow.

The first time we went (on Wednesday), I did not take her stroller and regretted it. This time, I had her stroller already in tow from the kick off.

Once we arrived, I pushed her around for a while. I had the same problem today that I have each time the stroller has been used since she outgrew the infant seat attachment.

She has trouble sitting up in the stroller.

I’ve tried to remedy the problem by placing a rolled up blanket around her head and shoulders. It doesn’t really work. I hoped the problem would be a short term issue that went away as she got stronger. Not so much.

Tonight, I polled my Facebook friends (most don’t have this problem) and received several affordable solutions. I thought I would mention the ideas in case any one else is in a similar position with their little one.

First, my friend recommended getting a wedge cushion from a medical supply store and using it as a stroller insert after making the appropriate sized cut out. Since the cushion only costs $30, this would be the most economical of the options.

Second, another helpful friend recommended this stroller liner.

Finally, there are strollers made specifically for this issue. But, they tend to be pricey. I need to check insurance coverage and so forth.

I will investigate my options more thoroughly, proceed with trial and error, and report back. In the meantime, I’m open to suggestions.

 

 

Happy Birthday To Me!

Today is my 35th birthday. I am officially in my mid thirties. If I got pregnant again (not happening), my medical chart would be plastered with alerts warning staff of “advanced maternal age”.  Does that mean I am now an advanced mother?

Anyways, to celebrate my birthday, Charlie and I spent a lovely afternoon at Harper’s Ferry, WV. The overcast sky made way for the sun just as we arrived. We spent the afternoon playing in the grass by the river, walking on trails, and strolling through town. Oddly enough, I think the shuttle bus was Charlie’s favorite part of the adventure.

Getting older doesn’t bother me. I am not embarrassed by my age nor do I dread getting old. Mostly, I am grateful for the privilege to grow older. Additionally, I’m thankful beyond words to have Charlie with me.

Birthdays do not get any better than today.

 

 

The “B” Word

Charlie has finished her second week of the new speech therapy program today. The program is a good fit for us. I love it.

The commute to each session is a little under an hour. It sounds terrible but it isn’t. To make best use of the time and gas, I plan an activity that is on the way. So far, Charlie has been to the zoo, a book fair, the children’s museum, and the park before speech therapy. Sometimes, we stop for lunch or run errands. After each session, she naps on the way home.

Instead of feeling bad for me, the person I feel sorry for is the student therapist. Charlie is full of energy and curiosity. That is a nice way of saying she gets into everything without a moment’s rest. In addition, the student therapist is being observed and critiqued by her instructor via a video camera link up. The situation seems like it would be a lot of pressure.

Nevertheless, the student rises to the challenge and does a great job with Charlie (and me). I don’t feel obligated to participate in the sessions (although, I do stay in the room for Charlie’s comfort). Yet, I’m not discouraged from providing input, asking questions, or helping. The student does an excellent job coaxing those elusive consonant sounds out of Charlie’s mouth and teaching her how to use PECS.

Lately, at home, I have noticed a difference in Charlie’s speech. She slows down and tries to say words instead of the usual limited babble or closed mouth sounds.

Tonight, at dinner, Charlie said, “Ball” (prior to this she used ba ba for anything beginning with ba). Yes, it was more gluttural than it should have been and it was obvious that it required great effort. But, she did it on her own volition. And to us, it was huge!

Charlie plays with Kaia in the backyard.