Wait! She can do that too?!? Daily Discoveries with a grandchild with Down’s Syndrome

When we were told that they were testing Gloria for Down’s Syndrome, we faced the possibilities as a family but we were all aware of all of the obstacles that she would face should the test come back positive. We knew all of the things that they said that she “couldn’t” or “wouldn’t” do and we knew the extensive timeline they gave her for the things that she would “eventually” do. We were okay with all of this so long as she was healthy and able to get the most out of life as possible.

Well, the test, as you all know, came back positive and we immediately began screening therapists and preparing ourselves for other health issues that are associated with Down’s Syndrome. However, to date, we have had no major issues! None! One heart doctor watched a hole for a few months. Let me rephrase….one heart doctor watched a hole in her heart close over the course of a few months! She has flown through every physical and medical obstacle that they said we would have already encountered!

This Girl is Unstoppable!

Now, of course, there are some delays but we no longer accept the “couldn’t” or “wouldn’t” because obviously, they don’t know her. Yet, despite the entire family refusing to see anything but a small delay, we are all still overcome with amazement when she conquers even the smallest task.

For instance, mom, Chelsea, and I took the kids to the park the other day. (Yes, Chelsea is my son’s ex but she is also a part of the family so we still do family things together). The kids are all playing and we look up to see this:

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She didn’t need help. She didn’t need a hand up. She just climbed right on and played. Just like any other child! Do you see how proud she is? Magnify that by a million and you can imagine the faces behind the camera!

I spoke earlier about celebrating every first. With Gloria, this is easy. Every step she takes, she was told that she couldn’t but yet, here she is, doing her thing!

Interpret the word “can’t” as “haven’t yet!”

“Gigi”

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You won’t believe how they treat her!!! (The greatest compliment about my granddaughter with Down’s Syndrome)

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Recently, we were on a great adventure (aka running from hurricane Irma with four toddlers) that landed us in my small hometown staying at the late grandmother of my childhood best friend’s home. What a crazy turn of events that led to this moment but these crazy moments are what life is made of! Oh, it was magnificent! Four generations hitting the open road and spending every minute laughing instead of worrying about what we could have possibly lost in the hurricane. After all, we have experienced loss. We have experienced the possibility of loss. And yet, we are together and no longer worry about such things.

I have four incredible yet different grandchildren with their own way of showing love and their own way of driving me absolutely batty! But that was always the plan. When Ashley and Chelsea were pregnant with my girls and due a day apart, I told them repeatedly to never compare milestones. This was before I knew that I would be blessed with a grandchild with DS. This was before I knew which girl would arrive first. This was before I witnessed both of their entrances into this world. I remembered raising my own children and knew that each child was different. However, I also knew that each child needed the same consistency.

At one point in my life, I was a long term substitute for the “special needs” class in my hometown. I met a young lady named Sylvia (and I pray that this reaches her and her mom who have inspired me for so many years without knowing). Sylvia entered the classroom one day and asked me to tie her shoes. Her mother, who had walked her into the classroom, quickly scolded her and told her that she knew how to do this and that it was wrong to make people work harder because she wanted attention. Oh, I cannot tell you how often I have used that line with all of my grandangels. But, to move to my point, she taught me that it is possible for all children to learn everything both academic and social so long as they have guides to help them along their way.

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This is what I explained to my son the day they told him that they were testing Gloria for DS. This is what I knew in my heart to be true. This was the line that I would not cross with my first grandchild. She would be loved and guided but she would also be expected to be good and to learn everything that she could. She would be different because we all are, but she would not be treated “special” in her home.

With that said, we have all agreed, as a family, that this would be our approach to DS. We would understand that it may take her longer to do certain things but this would not be an excuse to NOT do them. And you would not believe how much this has helped her (and the other three). They all pace themselves together. They all push each other to the top. They fuss with each other. Share with each other. Tattle on each other. They do everything together. Gloria gets more time, but she does not get “special” treatment any more than they ALL do.

Now, to move forward, I have to give you a little insight on my girl. Gloria Ann is the sweetest child. Her favorite activity is going to one side of the room and running, with open arms, towards the adults and making us guess which one is going to get her hugs. She cracks up when the ones not chosen pretend to cry and then runs back to do it again. This can go on for hours! She helps to pick up toys in the evening and also helps to dump out the numerous toy boxes in the morning. She eats well and carries her plate to the counter when she is finished. She is beginning to verbalize better but still uses some sign language for clarity. Most often we see “more” and “please.” When her signs do not get her whatever she was asking for, then her bottom lip trembles and she drops to the floor in a tantrum which can also last for a long time. She waits for her attention. Unlike the other children who will tug and pull at whoever is on my lap, Gloria will wait for my lap to be empty and then climb on up. She does not fuss at bedtime. She goes straight to her “big girl bed” and covers upon command. In general, she is a typical and well behaved child.

She does, as they all do, have her moments and habits that we have to address. For instance, Gloria likes to chew on things. This was never really a problem before she started school other than the poor Barbie dolls who lost the shape of their hands. However, now that she is out in the world, I have been worried that she may put something in her mouth that could hurt her so I have been working consistently on this. We are starting to make progress which makes me one happy Gigi.

This consistency has led me to this post. You see, we were staying with friends during Hurricane Irma and, like most people, they were not sure what to expect from Gloria. Four toddlers in a house that they don’t know is no joke! We said “no” “stop” “don’t put that in your mouth” “don’t lick that” “give that back to him/her” and “sit” more often because as soon as one was finished the next one would start. I do not consider this to be bad, just magnified from what most people face due to the number of children. Anyway, my best friend Heather, whose parents were hosting our evacuation, spoke to my daughter, Ashley on the phone. She said, “I was so upset yesterday when my father announced that I would not believe how they treat Gloria.” My daughter bucked and said “WHAT?” Heather laughed and said “Exactly! That’s how I felt but then he said ‘they treat her exactly the same and so do the other kids and it is beautiful!'”

To me, that was the best compliment that I could have received. I realize that few people will understand this but there is a method behind our madness! hat

All children are different and all children are special but, I have found, that all children just want to be allowed to be children. Let them learn. Tell them they can. Expect them to and they will surprise you!

To all my babies, be the best “you” that you can be!

“Gigi”

Blogging Journey Day 18: To New Friends

I believe that this was the primary reason for beginning this blog, to know that we are not alone and to let others know the same. Life is hard but it is so worth it and much more enjoyable when we have others to walk beside. So, thank you for being by our side.

WOW! I never would have guessed that only 18 days into this journey that we would have had a day yesterday with over 500 views reaching more than 1700 views to date. Thank you from the bottom of my heart for letting us know that we are not on this journey alone.

I believe that this was the primary reason for beginning this blog, to know that we are not alone and to let others know the same. Life is hard but it is so worth it and much more enjoyable when we have others to walk beside. So, thank you for being by our side.

There are so many different avenues that we discuss because there are so many different aspects of our lives that we feel others may also be encountering. A lot of our views have been related to our CPS case and I pray that we are providing a sense of hope for those who are going through this and a greater awareness to those who continue to believe the assumptions about CPS. Ashley has opened up about her relationship with Mikey and has found support from other men and women who have a significant other serving in the armed forces. There is a great pride for their loved ones but also a loneliness that can be lessened through these friendships. Ashley has also been able to connect with other mothers to discuss tips and swap stories. I have met countless of other families of children with Down’s Syndrome and we have been able to discuss the beauty of celebrating every milestone. You all have celebrated my Gloria’s birthday with us, prayed for my dear friend Heather as she nearly lost her life and underwent amputation. You have tagged along to the beach and heard the wisdom of my granddaughter, Clarabelle. There are so many journeys to come and more details to provide. We look forward to continuing to meet others and grow as a community who will overcome all obstacles together!

Together, we are better!

“Gigi”

Potty Training Times Three

Today, my mother and I decided that it was the time that we embark on a journey towards freedom (from changing diapers). Due to many reasons, our family does not utilize day care outside of family members which places my mother and me with my four grandchildren for much of the day. While this is a blessing, it is also A LOT of WORK!!! You see, these little darlings range from the age of 3 to the age of 17 months and there are four of them! It is like a toddler fest all day every day mixed in with cuppies and diaper changes and non stop cries for “num num!”

Clarabelle (age 2 almost 3) is potty trained which has resulted in a great deal of savings on the diaper runs. We have worked with the other 3 independently but on super crazy days we fall back into the daycare mentality of changing all the diapers at once and running around on “cuppy patrol.”

So, we have decided to do an all out potty training attempt. All three. Gloria (age 3) has Down’s Syndrome which makes potty training a bit difficult but, as her school is working with her now and she follows her cousin, Clarabelle, to the bathroom, we believe that she is ready for this. Elliott, (age 20 months) and Braxton (age 17 months) have both began taking their diapers off and, when we are not fast enough, adding to the daily cleaning list. (Yes, this has happened). So we believe that they are ready to begin, as well. The issue, of course, is getting them to tell us when they are ready to go. Not only is this difficult with one child, when there are three we anticipate that (A) they will be too busy and (B) we will be making a lot of runs to the bathroom.  But, with three, the savings will be amazing!!! In fact, I believe that if we conquer this over the next two weeks, then their parents should send us away on a nice weekend getaway (HINT HINT)!!!!

So, we know our challenges and can envision the rewards…here we go!

Wish us luck!

“Gigi”

Hold your Apologies: What not to say to the family of a Child with Down’s Syndrome

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First Day of School!!!

Can you imagine, you are holding what you believe to be the most perfect child in the world. She has blonde hair like her mother, hazel eyes like her father, and the cutest little dimple on her chin. Now, the lady in the next room also has her “perfect” child and recognizes that your baby does not have brown curls like her new bundle of joy… “Oh, I am so sorry,” she says! SORRY FOR WHAT? Sorry because your child is different from hers? Sorry that she believes her baby to be superior to yours due to one characteristic? Sorry because she does not understand having a child with blonde hair?

Can you imagine how you would feel? Immediately you would jump to defend your precious new gift or perhaps you would be so shocked that you could not even find the words to say. Are there even words to say? To need to apologize, one would have to have done something wrong. In order to empathize, one would have to have experienced something similar. To need either of these responses, there would need to be something wrong!!!

Of course, this situation would not happen in the newness of a labor and delivery wing so I will go beyond the color of their hair. Moving forward, let’s look at high school graduation. The little blonde girl graduates at the top of her class while the brown haired baby with perfect curls finishes her high school career among the middle range of her classmates. While the blonde may deserve congratulations for her hard work, the brunette would not expect sympathy. She completed her studies and did so respectfully. How would you feel, if someone offered sympathy because your child was “just average?”

What about glasses? Braces? Stuttering? Speech difficulties? A freckle? Birth mark? Do you apologize to the parents of these children? Do you say, “I am so sorry that your child is different than mine?” Do you say, “I’m sorry that your child has less the ‘perfect’ traits?”

Of course, you don’t because that would not be NICE! That would not be ACCEPTABLE!

When my granddaughter was born, we all stood around the nursery noting every little finger, every little toe, every cry, every smile just as the other families did for their new additions. We were elated that she would soon come into our home and brighten our lives forever. We prayed together when she was on oxygen. We leaned on one another when they mentioned flying her to a larger hospital. We waited together to hear the doctors tell us that she was going to be okay. And she is! She is better than okay. She continues every day to laugh and learn, grown and amaze us. She is PERFECT!

Yet, for some reason, when one of the family says, “she has Down’s” the immediate response, without exemption is “Oh, I’m sorry…” and we want to yell “WHY?” We are not sorry that your child has blue eyes or straight hair. We are not sorry that your child has freckles. We are not sorry that every time your child learns something new the whole family does not celebrate. We are not sorry that your child’s first steps or clearance from a heart doctor did not send you straight to the bakery to pick out a cake. Instead, we are thankful that your child is perfect in your eyes and would like for you to know that Gloria is perfect in ours.

 Happy Birthday, Gloria! 

A Race To The Finish Line 

There is nothing wrong with her. She is in excellent health and is moving along the developmental chart at a steady pace. The pace may not be the same of your child, but your child’s pace is not at the same pace as someone else’s child. And they are NOT SORRY!

I get it, you may not know what to say. You may have heard scary things about Down’s Syndrome. You may think that this is some form of life threatening situation and that your heart felt “I’m sorry,” refers to the inevitable loss of her ability to have any quality of life. I get it. You do not know about it so maybe your apology is for your lack of awareness. I do not know a thing about raising a child with red hair. I have no clue about freckles and sensitive skin. But I am not sorry for the parents who have children with red hair because this is a beautiful characteristic of their perfect child. I feel no need to stare or apologize but, if I really felt the need, I would ask respectful and caring questions like, “what brand of sunscreen do you use to protect his/her beautiful skin tone?” or “what type of conditioner makes their hair shine like that?” I could even accept questions like, “Do you have extra health care concerns because of this characteristic?”

To apologize to a parent because of a single characteristic that makes their child unique or special is not only disrespectful but also hurtful. Families of children with Down’s Syndrome are simply families with children. Please think before you speak and, if you cannot compliment or ask a question tastefully, then please just smile.

 

Normal is unattainable for anyone! Special is in our DNA!

“Gigi”

Happy Birthday, Gloria!

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I will never forget the morning that I was told that I was going to be a grandmother. I mean, who could forget a morning when not one, but two of their children informed them that they were pregnant (especially when both of them were teenagers)! I was scared that my children would face the same hardships as did I. I was afraid that my grandchildren would have to do without the stability that I had also struggled to provide for my own children. I was afraid that this trend that I had set into motion of being a teenage parent would simply make things harder for them.

Of course, I was also elated! At the age of 36, I was going to have two granddaughters! I went to nearly every appointment. I woke them up with gift bags or essential baby items more often than I can remember. The excitement was intense and only became stronger as we learned that the girls were due one day apart! Yes, ONE DAY!!!!

Now, when you are dealing with two teenagers (18 and 17) that are also pregnant (my daughter and my son’s girlfriend), then there will be tensions. As I am blessed with a close family, the only major tension that we dealt with was who was going to win! Who was going to bring home the first grandchild? Who was going to change my name from “Mom” to “Gigi.”

Weeks and months passed. Baby showers and crib assembly occurred. I was fortunate that my home would be the first home for my girls and I walked through impatiently awaiting the sounds that would come along with their entry.

Then, the morning happened. Chelsea (Gloria’s mother), was going to be induced due to low fluid levels. Ashley, despiting wanting to “win the race,” was excited that she was going to be an aunt while I was ecstatic that I was finally going to welcome my first granddaughter. Damion and Chelsea were excited and scared and all things that expecting parents should be! Zachary was happy that he, and he alone, was not about to be a parent but rather was going to be the cool uncle that could watch from a distance.

Labor was hard. It was hard on Chelsea, it was hard on me and her mother, and it was hard on Damion. The nurses did not get a break and the doctor was running late. The day was anything but magical as anyone who has had children can imagine. It was hard. Then, I looked over at my son who had tears running down his face asking how he could make it easier for the mother of his child. It was beautiful! No longer were the sounds of childbirth echoing in the room as the sounds of love and family took over

Then, I looked over at my son who had tears running down his face asking how he could make it easier for the mother of his child. It was beautiful! No longer were the sounds of childbirth echoing in the room as the sounds of love and family took over the space. My son was about to be a father and I was going to be a grandmother.

What seemed to be only moments later, I saw the most beautiful face I had ever seen. My granddaughter, Gloria Ann, entered this world on August 27, 2014, and changed the way that I will forever see the world.

In the days that followed, Gloria encountered medical scares that she overcame before being sent to a pediatric hospital. We were told that her oxygen level was not regulating and that she had a bowel obstruction. Yet, with the power of love and prayer, Gloria Ann was able to surpass all expectations. Then, when my son called me to the hospital, he looked at me with fear in his eyes, not fear for himself, but the kind of fear that a father feels for his child.

“They believe she has Down’s,” he managed to mumble through his tears. Immediately, I took him in my arms not as a child, but as a parent. “She has something extra and we will love her for it.”

That was it! That was all that had to be said. Gloria continues to surpass the expectations placed on her. She has no medical problems that are typically associated with Down’s Syndrome. She attends school and acts as a typical toddler. She continues to open up our eyes and change the way that we see the world just as she did the day she changed my name to “Gigi” and I will forever be grateful to both Damion and Chelsea for allowing me to tag along on this journey.

Happy Birthday, Gloria Ann! May you always win the race!

“Gigi”