Everyone loves puppies, right?

Not my daughter, Faith. At least not yet…

My husband and I have both wanted a dog for several years. We’ve always had dogs as children and young adults. What’s not to love about dogs?! There are countless reasons we wanted a furry family member, but I’ll just share a few…

Loyalty, Love, Fun, and Being More Active

Let me give you the back story about why Faith is not a fan of Primadonna.

It all started about seven years ago. I found myself alone with the kids and going through a divorce. Honestly, going from my daddy to a husband and never having been on my own, the once always-taken-care-of little girl inside of me was afraid. My son was thirteen and Faith was only nine. I wanted to feel safe at home alone with them. I wanted protection for the house since the ‘man of the house’ was now an unpredictable teenager.

So, my brilliant idea was to get a dog!

Years prior we had rescued and adopted a wonderful pointer-whippet mix when the kids were very small. Sally had been abused and neglected for years, so she was very timid. Faith was only about two and was fast friends with the calm, sweet and quiet canine. Faith cuddled and played with Sally all the time. The kids grew up with Sally, for the next four years, until sadly her medical issues sent her over the Rainbow bridge.

I didn’t expect any problems. After all, Faith was happy and loved a dog in the past.

But this time was very different.

My cousins raise and train dogs and horses, so I went to him to adopt a new pup. In hindsight, the young and active chocolate lab was too large and had an overabundance of energy that Faith had to handle. Rocky hadn’t quite been trained yet and at only two years old he already towered over my little girl. He jumped and barked constantly, as young dogs do prior to training. I felt so bad for my daughter. She was terrified in her own home. I felt like a failure as a mom. In poorly handling my own insecurities about living alone, I made a terrible mistake that negatively affected my daughter.

In the end, I had no choice other than to return Rocky to my cousin. I just couldn’t have my daughter crying and screaming every day.

Fast-forward seven years later, we decided to adopt a black-lab mix from the local shelter. My thinking was since she was a puppy and so small it would be easier for Faith to accept her new furry sister. I’m aware that puppies, in general, are high-energy and barky, but Primadonna was so sweet and calm and honestly, I couldn’t resist.

My husband and I were able to adjust Miss Prim to her new home alone since Faith was at her dad’s the weekend of the adoption. She was and still is, adorable, sweet, and super smart. I gave Miss Prim some things of Faith’s so she could get to know her scent. Meanwhile, I sent pictures of Primadonna to my son, so he could show them to Faith and ‘talk her up’ while they were at their dad’s.

At the first meeting, Miss Prim was very well-behaved. She sat and was quiet just looking up at Faith with the adorable puppy head tilt. I wish I could say the same for my daughter…

Faith’s anxiety kicked in and immediately the yelling, grunting, and dramatic arm on her forehead ensued.

For those of you who haven’t followed my blog in the past, Faith is a smart and sweet sixteen-year-old girl with Down Syndrome. She is non-verbal and no one knows her better than I do. I of course understand that she has a fear of dogs, but part of my job as her mother is to help her overcome her fears. I teach her that the road is dangerous, not to touch the stove, and she knows not to go out to the pool without an adult. But in the case of a well-behaved puppy, she needs to understand that there is no real danger.

As well as I know her, and for the most part, I have always known what she wanted or has been thinking for the past sixteen years. But there are times like now, all I can do is pray for help.

I got to thinking, her being ‘afraid’ of dogs may just be a hard habit to break.

For the past month, I’ve been running myself ragged trying to make sure Faith feels safe, but also creatively coming up with ways to be fair to Primadonna. (I don’t want to have her in the crate all day.)

Adhering to Faith’s routine is very important, as with most children. For children who have Down Syndrome, it’s especially necessary to stick to their routine. Schedules and routines have always been necessary for Faith, as it provides her with a sense of security. Especially now that her home space has, in her mind I’m sure, been violated by an unwanted furry intruder. So, my priority is Faith. I make sure she still goes about her business as usual.

The daily routine goes something like this…

Faith wakes up and goes right into the bathroom. Even at sixteen years old, we are still potty training so this has proved to help her immensely. I go in with her, initially, to lay her school clothes on the sink counter. She then goes potty and gets dressed all on her own. While she’s closed in the bathroom I bring Miss Prim out to do her ‘business’. By the time we’re done outside Faith gets escorted carefully into the bonus room. I keep the glass, french doors closed so I can see her and she can me with Prim. That way she can stick to her morning ritual of cereal, drink, and Chromebook.

That gives her the opportunity to watch me play with and function in our home with Miss Prim while feeling ‘safe’ behind closed doors. I’ll often bring Prim over to the french doors so Faith can wave to her. If my husband hasn’t left for work yet, he takes Primadonna into the bedroom so I get faith out of the bonus room and out the door to get the school bus. If he’s already gone, I crate Prim so Faith can walk through the house without upset.

It makes for a very stressful morning… for me.

Now, here’s the kicker. We’ve caught her a few times with Primadonna when she didn’t see us looking. She didn’t yell, cry, or fuss. Then, as soon as she spots us peeking around the corner, drama ensues with the arm going up on her forehead and her “eh eh eh eh” distress sound begins.

Then, I thought, maybe it was for attention. After all, a new puppy is a lot like a baby, and Faith has always been the ‘baby’ of the family getting all of our attention.

Considering Faith seems ‘okay’ with Primadonna when she thinks we’re not looking, and the fact that it may be for attention, I am now trying not to react to Faith’s theatrics (as much). I have also enlisted the help of a co-worker, a special needs behavior specialist, from the school where I teach. She actually is coming over today to meet Faith and watch the show. Wish us luck!

So, this is just another story of the crazy, unpredictable life of raising a child with Down Syndrome. There are struggles and stress at times, but always joy. And as always, it’s my mission to learn more about Faith and her specific special needs in order to help her learn, overcome her fears and live a happy, successful, and full life.

This story does not have a happy ending. There is no solution. And, unfortunately, no happy, calm first hug between a girl and her pup.

At least not yet.

Stay tuned…

Keep in Touch

Do you have pets? How does your child with special needs get along with your pets? What obstacles do you face? What has worked for you? Feel free to reach out by commenting below or by going to http://www.ginapanzinolyman.com. I’d love to hear what you have tried and what works for you and your child. I share my thoughts and feelings with you, so that you may find comfort in knowing that life is hard at times, but you are not alone. Don’t be too hard on yourself. Take care of you! Stay well!

As I sit here in the surgical waiting room at the Children’s Hospital of Philadelphia (CHOP), I’m praying for my baby girl, but I’m still filled with anxiety.

No one can imagine the worry and panic of a parent when their child is sick, in any way.

If you’ve read my previous posts, you know that Faith had open heart surgery when she was only 5 months old. She pulled through with flying colors and not only were additional surgeries not required, but she has not needed any medications since.

Today, she is 16 years old and has been very healthy for the past fifteen-plus years. However, her anxiety got progressively worse the older she got.

It started at about ten when Faith became very agitated and overwhelmed with anxiety at every doctor appointment. As time went on I realized Faith has, Iatrophobia, a fear of doctors. The older she got and the more she grew, it was near impossible to physically make her do anything she didn’t want to do. Especially allowing doctors to examine her, in any way. Believe it or not, even a stethoscope or blood pressure cuff would freak her the freak-out. That of course created worry, panic, and high anxiety for me. Her fears heightened to the point that no doctor or nurse could perform any medical exam of any kind.

We went a couple years going to appointments and leaving without a completed exam. Medical personnel would not force her due to the risk of injury. So we began the arduous journey of trying to get all doctors, and specialists to coordinate efforts. Just as we were in the middle of organizing a joint effort, covid hit. Everything came to a screeching halt and I was left to continue to wait and worry about her not having any exams.

Meanwhile, I made sure I did everything in my power to keep her healthy. I loaded her up with all-natural supplements, whole fresh fruits, veggies, and a lot of water. She had minimal ‘junk’ and absolutely no soda or chemical sweeteners. It must have worked pretty well since she was never sick. Her pediatrician couldn’t believe she only saw Faith once a year for well-visits and always asked what I did to keep her so healthy. I would explain that I have been adamant about giving her whole, real food, minimal to zero processed foods, a lot of water, zero soda, no chemical sweeteners, all-natural holistic supplements, and a lot of fruits and vegetables.

As medical facilities opened more and allowed more procedures. We began again to convince, coordinate and plan for all doctors to each perform their own exams and procedures simultaneously, all while Faith was under anesthesia. It took another year to get that approved.

So, here I am.

Finally.

I’m happy all exams are being done, but I’d be lying if I said I wasn’t nervous. I’m typing to stay calm but also to share with all of you another part of our journey in Raising Faith. Anesthesia is no joke. Everyone reacts differently to the medications used and not everyone comes out of it easily.

Faith did not.

The medical professionals brought me and her father back into recovery just before she woke up, so we were there when she came to. As much as I wanted to be there for her, it was very upsetting, to say the least.

We were by her bedside, only a few minutes when Faith awoke in a state of terror. She yanked out her mouthpiece, from the breathing tube, coughed up blood, tugged on her leads, and ripped out her IV! And as quickly as she woke up to cause chaos, she fell right back to sleep. It was heartbreaking for me to see her that way. I continued to pray.

Over the next couple of hours, Faith would wake with heavy eyelids, check that I was there, and go back to sleep. Between the breathing tube irritating her throat and the dental work that was done, her mouth continued to fill with blood. I assured her that I would be right by her side, cleaned her up, and gave her dozens of hugs and kisses.

By that evening, Faith was ready to eat having had to fast the night before and going all day without anything. I had to be careful what and how much food I allowed, not only because I was concerned about nausea but because the dental work that had been done had some restrictions as well. Then she grew more and more coherent and steady on her feet. Finally, about 24 hours late, she was back to her sweet, sassy self.

It was a very long, stressful, and mentally exhausting two days. I am extremely grateful that she is okay and has now had all of her regular exams.

If you have never experienced the anguish of a sick child, may God continue to bless you and your children. As for me, I am blessed and grateful that I’ve only had to endure such events three times in the past sixteen years. I know many parents who had to watch their children suffer much more and my heart goes out to all of you.

Want to share your story? Drop your comments below. It’s my hope that our stories resonate with you and you are touched and encouraged. Remember, to always Have a Little Faith!

Stay well!

Gina

http://www.ginapanzinolyman.com

I heard countless moms refer to the ‘terrible twos’. That phrase is often thrown around when their toddler is freaking out in the middle of the mall or having a meltdown at a birthday party, or throwing things, yelling, and stomping their feet in classic 2-year-old fashion at a restaurant. It’s almost an excuse for the little ones’ misbehavior. “Oh, yeah, well it’s the terrible twos.”

I’ve seen it many times. My children didn’t go through the terrible twos. Not that I’m “mom of the year” or had some magic solution to calm their nerves. Absolutely not. All children progress and learn at different levels. I also was home for two years with each of my babies, so the fact that they had me all to themselves at two may have lessened the effects. Whatever the reason, I never experienced the horrifying tales described above. However, I witnessed it over the years on many occasions and honestly was always baffled by it given the fact that I never had to endure such torture as a young mom.

I believe God blessed me with a well-mannered three-year-old boy because He knew I was carrying a special child at the time and had bigger concerns. I believe He blessed me with the ability to teach my little boy excitement and build up so much pride in the fact that being a big brother was a badge of honor that I never dealt with sibling rivalry or jealousy. So for me, two, three and four-year-olds were nothing but fun. Thank You, Jesus!

However, He slammed me with the teen years, after years of parenting, so I could experience the true turmoil of parenting.

My son definitely knew how to push my buttons when he was 13-18 years old! He got punished a lot for disrespecting. We went head-to-head many times. He had his phone taken away and lost opportunities to attend parties. I will say though, it’s changing now that he’s 19 and we usually have discussions like adults. Sure they get heated at times, mostly because I’m still trying to be ‘mommy’ and also because he got the “I like to be right” gene from my DNA. But he works hard, pays his own bills, and has the freedom he desired in years past. So it’s now not as much of a battle, as a conversation about his choices.

Teenagers are unpredictable and emotional. One minute they love you and the next you think they hate you. Hormones are out of wack and their emotions are all over the place. The unpredictability of what may happen next is unsettling, to say the least. Us moms never know what we’re going to get from one day to the next… hell, from one minute to the next. So it’s no wonder we feel stress and worry for our teens. Our once sweet children loved us unconditionally, now pout, yell and throw fits when they don’t get their way.

Faith is no different in this regard. Lately, it’s been a constant battle of wills.

What is different? …

If you’ve read previous posts, then you know Faith has Down syndrome and is now fifteen years old. She is also nonverbal. She does use some sign language but only very basic signs. She also has an iPad with a speech app that helps her to communicate. However, during those times when she’s aggravated, she doesn’t care about stopping her fit to walk over to wherever she last left the iPad to calmly select the correct buttons that express her feelings at that given moment. So it is very frustrating for her (and me) that she cannot have a conversation, or explain why she is upset.

Don’t get me wrong, it’s not all bad.

There are moments of pure joy. She enjoys puzzles, dancing to the latest songs, and shutting herself in her bedroom to watch her favorite tv shows. She even loves to help with laundry, setting the table, and emptying and reloading the dishwasher. And, yes, I should be very grateful my teenager actually likes doing chores, and believe me, I am.

But, there are also days (like yesterday) when I feel so helpless I honestly don’t know what to do. I was so frustrated and overwhelmed it drove me to tears and left me second-guessing myself and wondering if I was a good mom.

Faith adores her Mommom Barbara. My mother is always willing to have her girl-time and graciously give me a much-needed break from time to time. She has always loved up on her and showered her with so much love and affection from day one. When Faith is at “MaMa BaBa’s” they do nothing but laugh, play games, do puzzles, sing, dance, go out to lunch, and have more ice cream than old-mommy would ever allow. So, it is completely understandable that she wouldn’t want to leave with me when I show up to take her home.

However, a stubborn ‘sit-down’ in Faith’s world can last anywhere from 20-45 min.

She’s been known to sit in the car, in our driveway, and wait us out. She has sat on a school bus for 20 minutes holding up the other children because she refused to get off. She has plopped on the floor at the Shop Rite check-out counter blocking other shoppers and preventing the next person in line from paying for their groceries.

In times like these, I do not get embarrassed. In times like these, I jump right to ‘what am I doing wrong as a mom’ and ‘how have I failed as a mother’ because she just won’t listen to reason.

Teen Faith is too big for me to just swoop up in my arms and carry her as an unwilling child out to the car while protesting. Those days are long gone. When she decides “I am not leaving!” then I am left to attempt to reason with my special girl. There is no trick to the trade that changes her mind. She is as stubborn and as strong as a mule and if she doesn’t want to go, well then… we’re not going.

So I’m waiting at my mom’s yesterday and my helpful family is all having their hand at convincing Faith that it’s time to go. Nothing works. They tried reasoning with her. They tried getting her excited to go home for dinner. They even pretended to leave, saying goodbye and hiding in the bedrooms. Nope. She’s too smart for that. Matthew was using his high-pitched theatrical, fun voice and offered a piggy-back ride. Not happening. I sat there watching everyone trying so hard to help me and I felt so grateful for my loving, supportive family. But at the same time, I felt bad that at this point all the failed attempts had taken over 30 minutes and we were now inconveniencing everyone else and affecting their schedules and plans for the day.

I started to cry.

I started thinking about all my other commitments and obligations that needed to get done. I did have plans for my afternoon. I grew more and more frustrated and felt completely helpless. I wondered where I went wrong with her. I thought about the fact that her hormones affect her behavior. I felt hurt that she was always so excited to go with my mom or her dad, but she could care less about going with her mommy. I know that she is with me the majority of the time so I’m not an exciting option. I decided to use that to my advantage before I had a complete breakdown. “Faith, Do you want to go in Aunt Dawn’s car with brother!?!” I asked in the most excited, happy voice I could muster through tears. That was it. She got up, took Matthew by the hand, and walked out after 40 minutes. At that point, I didn’t know whether to applaud, laugh or cry. So I actually did all three. We all rushed out before she could change her mind.

The rest of the night she was totally fine as if nothing happened. I, however, was so emotionally drained and exhausted I went to lay down. My mind and my heart needed time to heal. Thank God for my husband who entertained her and had her help with dinner and setting the table so I could decompress.

There is no lesson here. I have no pearls of wisdom when it comes to parenting a special needs teen. All I can do is share my stories, in hopes that you will not feel so alone if something similar happens to you. If I had to give my unsolicited advice or provide suggestions I would say this:

1. Pray for guidance and wisdom… often.
2. Always love your child and act loving no matter what.
3. Stay calm; because yelling or having your own fit only makes it worse.
4. Don’t second guess your mom-powers. It’s not about you.
5. Rely on family to help when needed.

Is your special child a teenager? What obstacles do you face? What has worked for you? Drop your comments below. I’d love to hear what you have tried and what works for you and your child. I share my thoughts and feelings with you, so that you may find comfort in knowing that life is hard at times. And you are not alone. Don’t be so hard on yourself. Take care of you! Stay well!

Faith is now in high school! I actually can’t believe I just typed those words. How is it that my baby is fifteen years old already?!

I’ve always been a bit of a worrier, but lately, I’m not sure what had me more concerned. The fact that we were moving again and she’d start a brand new school or the fact that she was going to be in a huge high school with several hundred typical kids. Although she is in a self-contained special education class, she walks the halls with the general population to go to some of her classes.

I’m proud to report, Faith not only transitioned like a champ but is thriving socially, academically, and absolutely LOVES school!

As a mother, worry has often been all-consuming for me ever since my firstborn, 19 years ago. However, as a mother of a child with Down Syndrome, there are even more issues to be concerned with. If you have read my previous posts, then you know Faith is non-verbal. That alone causes much of my concern because she cannot speak up for herself or explain if something or someone upset her. However, she does somehow find a way to sass me as a typical teenage girl would when protesting her mother’s requests. But when she is not with me, I worry about how she can communicate when something is wrong or how she can let other people know her wants and needs. I worry about what’s wrong when she’s upset and it breaks my heart that she cannot tell me why. She does know sign language. I taught her the basics as I taught myself when she was very young. Her school also provides an iPad speech device, which is amazing and does help in most situations. In any case, I still worry, as most moms do.

People with Down Syndrome are, in many ways, just like the rest of us. Typical teenagers want their space, freedom, friends, and options. They want to choose what, when, and how to do things. Faith is no different than other teens in that regard. I’m torn between guilt and pride when she goes in her bedroom and closes the door to binge-watch her favorite tv shows. I say guilt because for so many years I have played games, worked on puzzles, helped her with art projects, drilled new vocabulary, and practiced her Math skills, that when I’m not ‘teaching her’ I feel like I’m not doing my job as a mom. Although, it does make me happy that she is becoming her own person and doing things the way she wants to do them. Recently, I started to give her more choices, from what to wear, what activity to do, how she wears her hair, and which foods to eat. She clearly is happier having options and feels she is in control of her own day-to-day.

In school, her teacher has emailed several times and discussed in parent-teacher conferences just how well Faith is adjusting to the high school environment and progressing socially and academically. She is not quite as high functioning as some of the other kids in her class, which is a good thing. I believe it’s good because she sees what her classmates are accomplishing and it makes her strive to do the same. I love that the bar is set high and am so proud that she is working hard to improve.

My girl has truly come a long way! She has overcome so many challenges in her 15 years. She’s a fighter. She’s determined and strong-willed. And I am SO VERY PROUD.

Want to share your story? Drop your comments below. It’s my hope that our stories resonate with you and you are touched and encouraged. Remember, to always “Have a Little Faith”!

Stay well!

Gina

I have been blessed with unconditional love throughout my lifetime. I have experienced the unwavering love of my parents, grandparents and sister growing up. And now that I’m a mom, I can honestly say “I get it”. I’ve learned you don’t need to be a parent, though, to understand or experience that level of devotion. Many people have the capacity to love others, aside from their parents and children with deep love and fierce loyalty. Unconditional love, for me, means that you feel a powerful connection to another person’s soul, and a deep admiration and respect that nothing can shake. Forgiveness, although difficult at times, happens somewhat naturally when you possess an undying love for another person. I have been blessed to say I receive and give unconditional love to many people in my life. As a mom, I’ve had the pleasure of witnessing the unconditional love between my own children. Sure, sibling rivalry is an actual thing. Not all brothers and sisters feel a close connection. Some argue a lot and still love each other very much. Sadly, others did not grow up close or may be estranged from one another as adults. That’s exactly why I am so grateful for the bond between Matthew and Faith.

I heard a lot about a new baby coming into a family often making the older child feel jealous. They inevitably give up some of the attention when another child comes along. As a result, jealousy can turn to resentment, years of bickering or competing for attention. Matthew was only 4, so I had to get creative when talking to him about a new baby coming along. I wanted to build him up as much as possible so he would never feel slighted or loved any less. I took advantage of every opportunity that came along during my pregnancy, to make it all about him. Instead of saying the baby this and the baby will need that, I would talk about all the wonderful things HE can do with her and for her. I told him how proud I was of him and the fact that since he was such a good boy I KNEW he’d be an amazing big brother. I explained that being a big-brother was an honor and a very important job. Knowing early on, that Faith had Down syndrome, we were able to discuss that too. I explained the baby as God’s gift to all of us. I told Matthew that she had an extra chromosome, which meant she would need a lot of help with learning things, but it also made her extra special. “What a great big brother you will be, Matthew!” I focused on how fun it would be for him and all the ways he would help her. He couldn’t wait! From the beginning, Matthew was so proud and excited to become Faith’s big brother. He took his job very seriously. Matthew would go on and on about all the things he would teach his little sister. When she was born, she had a feeding tube and needed open heart surgery. As you see pictured above, Matthew thought she was perfect! He promised to always look out for her and protect her. He has without a doubt, kept his four-year-old promise, all these years.

Words cannot accurately describe the fullness of my heart, when I see them look at each other. They have always played with each other so well. He would jump around, dance or make silly noises just to see her smile. Then he’d day, “Look Mommy! I made her smile!” And I’d respond with, “Of course you did buddy. That’s because you’re such a great brother and Faith loves you.” Matthew would do whatever he had to make her laugh. I continued to praise Matthew for always being a terrific big brother whenever he’d spend time with her. Both Matthew and Faith would watch each other’s baseball games with such excitement. Matthew was at every dance recital, horseback riding trail-a-thon, and Special Olympics event. Both showing excitement and pride for one another, clapping and cheering. There were many times over the years when someone mistreated Faith, made a nasty comment or questioned “what’s wrong with her?” Matthew always went into full-on protector mode and sprang to her defense. I again, praised him for protecting his sister. To this day, Faith idolizes Matthew and he simply adores her. They have always been equally impressed by the other.

Today, Faith is 14 and Matthew is 18 years old. My heart overflows with love and pride to see them interact. It’s amazing to see how well he understands her, especially since she is non-verbal. He knows her sounds and behaviors and can quickly discern the problem and what to do about it. Matthew recently left for college, which is about 5 hours away. Although Faith cannot say with words how much she misses her brother, she signs for him often. Zoom meetings and face-time have been a Godsend. As hard as it is for me, to be without my son, part of me feels that it has been harder for the two of them to be apart. These two, in my opinion, are the epitome of unconditional love.

Keep in Touch

Do you have a deep sibling connection? Want to share your story? Drop your comments below. I’d love to hear about your relationship. I hope that our stories resonate with you and you are touched or inspired. Remember, always “Have a Little Faith”! Stay well!

In The Beginning

When I was pregnant with Faith, she struggled in utero. Halfway through the pregnancy, doctors noticed her organs were enlarging. Most concerning was her heart. She had a large ventricle septal defect (VSD). Knowing she would ultimately need open heart surgery, they kept a close watch on her progress. After countless tests and several ultra sounds, they realized that one side of her heart was growing, filling with fluid. Other organs were filling with fluid and everyone grew more concerned. The specialists ultimately determined that something had to be done, if we were to save her.

We decided on a somewhat, experimental procedure for Faith, while she was still in utero. They suggested an intrauterine transfusion, or fetal blood transfusion, for Faith, to replace her red blood cells, hoping it would allow the fluid and swelling to go down. So, with the fear of losing my baby, we signed off on dozens of papers, basically saying we wouldn’t sue anyone if it all went terribly wrong. My life, as well as Faith’s was hanging in the balance. It was such an uncommon practice that they used us as a medical example of training for medical students. The room was filled with about a dozen people. Including us, there was one nurse was for me, monitoring all my vitals, the technician performing the ultrasound to see Faith, and yet another assistant for the surgeon, an anesthesiologist, a lab runner and about 5 medical students, complete with their clipboards and notepads.

The procedure began with the doctor warning the medical students that they must not touch my gurney, bump into anything or speak. As he inserted the 10 inch needle into my pregnant belly, aiming at Faith’s umbilical cord, a curious med student came too close and bumped into me. The angry look from the surgeon and fearful looks on the nurses’ faces made my heart skip a beat and my eyes fill with tears. Thankfully, no damage was done and he proceeded to drive the needle in, watching the ultra sound screen to guide the location. I had to be awake throughout the entire procedure and lay perfectly still. One fraction of a centimeter could have proved fatal for Faith. He entered into the umbilical cord to inject medicine to put Faith to sleep, in order to do the blood transfusion. If she had moved at all during that first needle, it would have been life threatening. God steadied the doctors hand and kept Faith still. Phase one was complete.

Once Faith was asleep, the chaos ensued. They had to act fast, as Faith would not be asleep long. Another long needle was inserted into my pregnant belly to draw out her blood, the runner had to literally run down the stairs, so as not to risk being delayed by elevators unpredictable timing. He ran the blood to the lab to determine red blood cells and amount. The whole time the surgeon and I had to remain perfectly still as he still had two 10 inch needles inside me that had to remain in position. I was praying the entire time and watching the doctor. He was calm, focused and very still as sweat dripped down his face, his hands never moving at all. The room was silent.

As the runner returned, spouted off numbers, the assistants, technicians and nurses went back into action. The doctor injected Faith blood back into her cord and carefully removed the needles. The procedure was successful. And then we waited.

We were monitored for a while. The ultrasound showed Faith doing well. My vitals were all within range. So we were released. We went home grateful that we both pulled through and praying that the procedure would reduce the swelling of her organs.

The following week, ultrasounds showed that it was in-fact successful and had reduced the swelling. However, two months later the swelling of her organs returned and the doctors opted to do an emergency c-section, instead of repeating the transfusion procedure. She had 8 more weeks of the pregnancy to go, but they thought once she was born the fluid would naturally go down, if she stayed in utero she may not make it. I was terrified.

After the c-section, Faith remained in the NICU for 6 long, worrisome weeks. The doctors said her organs were of normal size but she still needed open heart surgery, to repair the large hole in her heart. She was on a feeding tube and heart medication for 5 months. She was very lethargic. Our home become a mock up of the neonatal unit with feeding tubes, pumps and medicine around the clock.

Answered Prayers

It finally came time for her open heart surgery. As we met with the doctor, prior to surgery, everything he explained was a warped distant, whisper. I couldn’t stop staring at his hands. He was a large man, about 6’4″ and 250 lbs. and I remember noticing how large his hands were. I couldn’t stop wondering “how on earth could those large hands perform a precise, intricate surgery on my tiny, premature baby’s apricot-sized heart?!”

When it was time, we rode up a private elevator to the operating room entrance. I held Faith close, against my heart, praying that our savior would protect and save my baby, guide the hands of the surgeon and ultimately heal her heart. The elevator doors opened, we were only allowed to step off far enough to give Faith to the nurse. Handing over my baby in that moment was the hardest thing I ever had to do. We stepped back into the elevator and had to wait.

With my family all in the waiting room, we went there to be together until Faith’s surgery was done. I never sat even a minute. I paced the hallway outside of the waiting room saying the rosary. Before I could even finish the third decade, it was over. The nurse came in and said it was successful, the hole in her heart was successfully repaired and Faith was doing well! “Praise God! Thank you Jesus!” were my very first thoughts.

Faith was home 3 days later, thriving, happy and healthy. From that day forward, she never needed medication again and to this day her heart is strong. It was as if she was reborn, finally an active, alert baby. We felt so very blessed and grateful.

Keep in Touch

Have you and your child been faced with medical issues? Want to share your story? Drop your comments below. I’d love to hear about you and your child. I share our stories with you, so that you may find comfort in knowing that you are not alone. Remember, every child and every situation is different. Have faith! Stay strong. Stay well!

Job Title: Mommy

There is no other job, that is as wonderful and rewarding, yet difficult and draining, as being a Mommy!

We are the CEO of our home. We are doctors, maids, playmates, chefs, teachers, taxi drivers, and therapists. There have been days, especially when both of my kids were very young, I thought to myself, “Who are these kids? And why do they keep calling me Mommy?”. It happens. We are pulled in many different directions, in order to do many different tasks throughout the day. Especially, this past year, in the midst of a pandemic, with everyone stuck inside most of the time, it can get intense. Some days, I feel suffocated.

If you follow, Life With Faith, you know, my daughter has Down syndrome and is nonverbal. Although she’s 14 now, and very smart, she still wants and needs me, very often throughout the day. When it’s a long stretch of time, 24/7 for a full week, I often feel frustrated that I can’t accomplish all the things I set out to do, for myself. She wants my attention. She wants to play games, go places, take a walk, do puzzles, and practice her reading. Of course, I want to have that quality time with her. So, I do what most moms do. I put my to-do list to the side, to play with my girl!

The emails wait. That book I’ve been waiting to read get’s put back on the shelf. That long, power walk, in solitude, out in the fresh air, gets put on hold. However, after several days in a row of going non-stop, I long for “Me Time”. Time, just for me, to be able to do whatever I want, whenever I want to do it.

And yet, when those rare days occur, as soon as she’s not here… I miss her.

What I’ve Learned

I’ve learned that I need to make the best it. I need to make the most of the time I do get. When she is needy and wants my attention, we do the things she likes to do. We dance, play at the lake, work on puzzles, just to name a few. I’ve realized, too, that I am blessed that Faith actually loves doing household chores! What teenager do you know doesn’t complain about doing chores? Better yet, she actually enjoys helping. I’m not sure if it makes her feel grown up or if she is trying to be like Mommy. Maybe a little of both. Whatever the case may be, I’ll take it. It actually enables me to get some of my to-do list items done, while I’m spending time with her. I can accomplish both. Mom-Win!

It is rare to have a whole day to myself. A day to take that long walk. A day to have the freedom to read the new book that’s been patiently waiting on the shelf. A day to have the opportunity to go for a long drive, with my husband, just the two of us. A day to have the chance to write. So until that day arrives, I will enjoy every moment with my daughter and be thankful for the stolen moments, in between.

Keep in Touch

Have you learned your own ways of finding time for yourself? What stands in your way? Drop your comments below. I’d love to hear what you have tried and what works for you and your child. I share my thoughts and feelings with you, so that you may find comfort in knowing that life is hectic. Me-Time is necessary. And you are not alone. Don’t be so hard on yourself. Take care of you, too. Stay well!

Our Kids are Missing School

During these crazy times of social distancing and remote learning, we must be diligent in keeping up with our children’s therapies. Faith is usually pretty good at occupying herself, when I’m teaching my 5th graders through zoom lessons. Although, it’s obvious she misses her teachers and her friends, when she signs “school, teacher and friends”. The social interaction is so important for all children. Our kids are lonely and sometimes bored. It’s been a struggle to get her interested in her own zoom lessons. She needs quick, to-the-point, musical, fun interactions. She loves being ‘hands-on’, which is something we’re all missing, while learning remotely. I worry about her missing her lessons and therapy. As a teacher, myself, I know all too well, how challenging it is to keep my students attention. I try new and creative lessons, often, that will make it more fun and entertaining for them. I must say, Faith’s teachers and therapists are working very hard at making their zoom meetings engaging. Having said that, every child learns in a different way. For the most part, zoom lessons, unless musical or physical, just don’t work for Faith. So, I have to supplement at home. I’d like to share what I am doing. Hopefully, you can take away one or two that you can use with your child.

What I am Doing At Home

As a teacher, I’m used to making learning not seem like school ‘work’. After a couple decades in education, I have a few tricks up my sleeve. There are countless ways to teach through play. Learning through ‘doing’ is fun for all of us, at any age or ability level. Here is a list of activities I do with Faith. She loves that I play with her and learning is then not only beneficial for her educational goals, but quality mommy-daughter time, as well.

1. Puzzles- works on fine motor skills, spacial awareness and problem solving; Occupational Therapy, Speech and Math
2. Baking- works on fine motor skills, hand strengthening; Occupational Therapy, Speech and Life Skills

3. Piggy Bank- sorting coins, learning which is which, putting in the slot; works on fine motor skills, counting and money: Occupational Therapy, Speech and Math

4. Playing outside- kicking/throwing and catching a ball; works on gross motor skills, hand/foot eye coordination: Physical Therapy, Speech and Physical Education

5. Walk outside- long walks (extending time and pace with time), collecting or observing and discussing leaves, flowers, birds; works on gross motor skills, appreciation and education of nature: Physical Therapy, Speech, Physical Education and Science.

6. House Chores- dishes, laundry and vacuuming; works on fine and gross motor skills, coordination: Occupational Therapy, Physical Therapy, Speech and Life Skills

7. Big Girl Like Mommy- getting dressed, brushing teeth, washing face and hands, fixing hair; works on fine and gross motor skills, coordination, self-care, hygiene: Occupational Therapy, Physical Therapy, Speech, Health and Life Skills.

8. Corn hole/Bowling/Skee-Ball- (she has these games at home, but they can easily be made with paper towels as bowling pins, bean bags or small balls in buckets) under-hand toss or roll; works on hand-eye coordination, fine and gross motor skills, coordination, following directions: Occupational Therapy, Physical Therapy, Physical Education, Speech and Life Skills.

9. Boggle- reading, spelling, signing and saying words; works on literacy, builds vocabulary: Reading, Spelling, and Speech.

10. Library- choose any three books and snuggle up; works on literacy, builds vocabulary, imagination: Reading, Spelling, Speech and most important… cuddle time!

Keep in Touch

Have you developed your own ways of home-schooling fun? What are your obstacles? Drop your comments below. I’d love to hear what you have tried and what works for you and your child. Don’t be so hard on yourself. Get creative. Do the best you can. There is a opportunity for learning in all that we do. Learning can be fun. Enjoy 🙂 Stay well!

During these crazy times of school closings and social distancing, the already busy day-to-day, now has additional challenges. I’m a remote teacher, for 5th grade students, which is a full-time job, in and of itself. Add to that, having a child with special needs home from school, who also needs to keep up with schoolwork and you have an extremely stressful environment. I pray every morning that I make the right decisions, teach in a way my students need, and can also be a great mom.

Don’t get me wrong, I absolutely love having my girl home with me. The trouble arises when I’m in a live zoom with my students and she inevitably needs attention. Faith has become much more self-sufficient , especially in the past year. She’s 14 years old now, so now more than ever, I try to teach her to do things for herself. Having said that, there are times she needs needs help with certain tasks.

If you haven’t read my previous posts, Faith has Down Syndrome and is very smart but non-verbal and not 100% potty trained. She’s come a long way and improves all the time. But there are times she needs her Mommy. I usually allow her the opportunity to ‘figure it out’ on her own first. But when I hear her noises of frustration, I know all too well, I know it’s time for me to intervene.

The problem is, if I’m in a live zoom meeting with my students, I can’t just walk away. My heart breaks and I immediately grow anxious as I hear her grunts and yells, from the other room. When that happens, it’s most often because she needs help on the potty or got into something in the kitchen (one day she discovered the garbage disposal button). If she’s TOO quiet, I worry as well. There have been times she just decided to leave the house. That of-course is emergent. So, on any given day, I need to quickly assess the type of noise she’s making. Being non-verbal, she makes a variety of sounds and over the years, I’ve learned to ascertain the meaning of each. During those times that Faith is struggling, I have to decide what to do. Do I cut my lesson short? Can I trust 5th graders to behave and stay on task if I were to walk away from the computer? Do I allow her to struggle, continue to squelch my guilt and keep teaching? Admittedly, I’ve done all of the above at different times, depending on the level of Faith’s calls for help.

It’s torture to have to choose my job over my daughter, or vice versa. I hate to ‘ignore’ my daughter, but I also feel guilty to leave my students given the fact that this is a difficult learning situation for them, and they need me as well. When all is said and done. I can only do what my heart says is best at the time. My daughter has Down Syndrome and needs assistance in the bathroom or can get into a dangerous situation.

For the most part, my days are, although busy, for the most part, successful. Typically, I can get Faith occupied with a puzzle or two, or even an episode of Dora, Mickey Mouse Clubhouse or the Doodle Bops, while I’m teaching. I also learned quickly, into our remote learning, to take our potty breaks before I go on my live zoom lessons. There are times I bring Faith to the computer to wave to my students or take part in our virtual Science experiment. In that case, not only am I killing two birds with one stone, but it’s good for all involved. It becomes a great opportunity to create Down Syndrome Awareness for my students and Faith benefits from the Science lesson. I have recently added a 2-3 minute Sign Language mini-lesson for my 5th graders. Again, I’m involving Faith, and spreading awareness. My students LOVE it! Win-Win!!!

Then, during my lunch break, everyday, I work with Faith on her skills. On this given day, pictured here, we used our ‘piggy bank’ (in our case dog) to sort and count money. Then used Boggle Jr. to practice our reading, spelling, sign language and speech. As you can see, Faith loves it!

The bottom line is, all we can do is our best. Some days we fall short. Other days we can pull it off without a hitch. I’m working on, not being so hard on myself and I recommend you do the same.

We are living in crazy, stressful times. The key word is WE. Many of us have similar circumstances, trying to work from home while homeschooling our kids. Find relief in venting to your friends in similar situations. Make time for yourself to de-stress. Hopefully, this post at the very least, helps you to realize you are not alone. Working from home and being mom is a tall order, but we need to play our best hand given the cards we’ve been dealt.

So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.

I’ve been so excited and just had to share my lifelong ‘dream come true’ with all my followers! Announcing my first, published children’s book, Have a Little Faith, about my daughter with Down Syndrome!

If you’ve read my previous posts here, you’ve already heard about the ups and downs of our special life. Many posts have been very honest about our day-to-day struggles. But, there is equally as much, if not more, about our special needs children to celebrate! I wanted to share my sweet girl and her many accomplishments, in hopes of promoting Down Syndrome Awareness and encouraging all children to believe in themselves.

This delightful book is about a young girl with Down syndrome who lives her life enjoying many of the things that all other children enjoy doing. The book is open about the challenges she faces and ensures readers that beyond these day-to-day obstacles she is just like anyone else.

During these crazy and uncertain times, we took precautions. Hand sanitizer pumps were at the door, the number of people were limited in the store, everyone maintained distance and wore masks (only pulled mine down for a couple of pictures and everyone was far away).

I feel truly blessed that the local bookstore hosted our event, the weekend after Thanksgiving. My girl was so excited about the book and seeing her pictures inside and on a giant poster! Not only did she thoroughly enjoy our event, but many lucky visitors got an extra special book with Faith’s signature as well!

Please check out my website and subscribe for links to purchase, press releases, events, announcements and information about my upcoming books. https://www.ginapanzinolyman.com

Faith and I are only two people experiencing and enjoying life. Our wonderful children are all different and wonderful in their own unique ways. My hope is that you may resonate with some of what I say. As always, I’m here to promote Down Syndrome Awareness and to provide support, and encouragement for all. So, to all the other “Special Needs Moms” out there, you are doing a terrific job! Believe in yourself. And always remember to Have a Little Faith.