Sometimes I Forget….

October 5, 2014October 23, 2014 HandMeDowns140 Comments

Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is kind hearted but stubborn. He immediately runs to check on sister when she is having a dramatic, I’m four and the world is over, meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say I love you.

He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music, he will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle, no matter how upset he may have been seconds before. Gabe can make music from anything, even the fireworks during the Fourth of July celebration.

Sometimes I forget, because Gabe is just that, Gabe. When I look at him I don’t see Down syndrome, I see my son, Abi’s brother, a sweet, willful, determined little boy.

Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….

Like the cashier that gave me sad eyes and spit poison in a whisper,

“I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her….

Instead I used whit: I smiled a crazy lady smile “I know right?! It’s so much harder to get rid of them once they come out. Believe ME I’ve tried…” Jackpot! Her mouth dropped open and she stared at me in shock. I leaned over the register and whispered to her,

“What you’re saying is that it’s okay for me to kill him while he’s inside, but not outside? In my book there isn’t a difference. For the record, we knew EVERYTHING about him during my pregnancy. He is our son now and he was our son then. There is no way in hell that I would let any harm come to either of my children. Including during the time that they’re so ridiculously considered disposable.

I had forgotten, that sometimes other people don’t immediately see Gabe, they see a “downs kid”. They see poor parents and a burdened sister. I sometimes forget until I glance up and see the pity in their eye, or hear the ignorant comments in not so hushed whispers.

I sometimes forget that it’s not their fault. They just DONT KNOW.

I sometimes forget that, that was me once too. What I knew about Down syndrome before we had Gabe, was what I’d learned from my nursing text books. It was only enough to leave me sobbing hysterically and envisioning a listless, immobile, incapable child.

Because I sometimes forget, is why months like October are so important to me. It gives our community a chance to spread awareness, to educate the public, to debunk the myths that are out there and show our children in a different light. It gives us a chance to move forward from just awareness to acceptance, so when were out in public and we are so taken by our children that we forget, that we aren’t reminded and shocked by the ignorance of others.

Sometimes Its easy to forget that our kids have Down syndrome. To us their just Gabe or AJ or Gavin or Max or Maddie. And that’s how it should be, and will be, if we continue to bring awareness and fight for acceptance; not just in October, but every day of the year.

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Down syndrome

#BlueNYellow

October 1, 2014October 23, 2014 HandMeDownsLeave a comment

In “Down syndrome Isn’t ” I talked about how October is Down syndrome Awareness month. This year the Down syndrome community is celebrating its 30th year of bringing awareness. I’ve read through a variety of posts throughout the day, lots of great ones out there! But, what I began seeing more and more as I read through these is a sense of dissatisfaction.

It’s not just enough anymore that we bring awareness, that ship has been sailing for 30 years. It’s time that we bring about acceptance. Meriah Nichols could be described in two words, amazing and courageous. She offered up a very specific challenge today in the form of a blog post:

“Let’s try to put our awareness into action and actively accept people with Down syndrome. Let’s try and move two steps past our comfort zone, whatever that might be.”

Not only has she challenged the public to transform their perceptions of what were celebrating in October, but she offers ideas on how to personally show that acceptance. The final words on her post are “Move past the awareness. Open your arms to acceptance“.

So here I am, nodding my head in agreement. I think it’s a great idea. When I take my children out, I don’t want people around him to only be aware that my son has Down syndrome, I want them to accept him for the incredible individual that he is. I want society to accept that chromosomes don’t determine worth or ability.

If you’ve watched tv today, I’m sure that you have seen pink everywhere. Do not misunderstand me, this is an important month for Breast Cancer awareness and the thousands of warriors out there. However, I’d like to see some yellow and blue too. Our community is beyond just bringing awareness, we require acceptance and want to be celebrated this month too. We’ve come so far in just these few years, lets see how far we can get in just 30 more days. I’d like to encourage you to include #BlueNYellow in your comments, posts and status updates related and unrelated to down syndrome. You can #BlueNYellow anywhere that you deem fit. Let see if we can move past awareness to acceptance and even acknowledgement!

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Down syndrome isn’t….

October 1, 2014October 23, 2014 HandMeDowns3 Comments

We all have our favorite time of year. Some of us even have our favorite months! While there are a few months that I’m pretty fond of, my favorite month just happens to be October. The leaves are usually turning colors and pumpkin flavored EVERYTHING begins to appear. There are fall festivals, pumpkin patches and of course those little pumpkin candies that I’m capable of eating my weight in. BUT all that pales in comparison to the fact that October is DOWN SYNDROME awareness month!

Something that you should know, is that October didn’t used to be my favorite month. I always used to be quite partial to June, because someone I know has a birthday that month (and she’s pretty awesome, if I do say so myself). It wasn’t until 2012 that I learned how amazing October could be! Our son Gabe was born in August and was not quite 2 months old when October rolled around that year and my family was transitioning from having one child at home to having two.

My husband and I were adjusting to feeding, clothing and keeping both children alive while our two year old was grudgingly accepting the the little thing her parents brought home was indeed staying, for good. Introducing baby number two into the family didn’t seem much different than welcoming baby number one, accept that this time around we actually felt like we knew what we were doing. The biggest difference was that Gabe brought with him and entire community. A community that I found, was celebrating during the entire month of October. The Down syndrome community celebrated anything and everything related to Down syndrome and worked hard at bringing awareness during the entire month.

Awareness is the knowledge or perception of a situation or fact. All across the globe, people are working hard this month to bring awareness to those around them by sharing facts and information related to Down syndrome. Some post blogs, some transform their Facebook sites, and some participate in events; the options endless. Each person and their unique abilities, allow them to share about Down syndrome in their own way and all of it combined paint a picture of this incredible community and the individuals that make it up.

I want to start by sharing what Down syndrome isn’t.

Down syndrome isn’t a disease, it’s not contagious, it isn’t an illness and its not something to be afraid of. Individuals with Down syndrome do not have to institutionalized, placed in separate classrooms, ignored, excluded or treated differently. Down syndrome doesn’t destroy families, marriages, it isn’t a burden, or something that someone is suffering from. It’s a single extra chromosome in every cell. Ultimately, what that means, is that everyone person with Down syndrome is the same as everyone else, they just happen to have something extra inside of them.

Today is only the first of October, that means that there are 30 more days that I get to share all about Down syndrome. 30 more days to celebrate all of the amazing things that the little extra chromosomes contains! Be sure to check back for tomorrow’s post….

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You Don’t Have To Be Brave, You Just Have To Be Mommy

September 27, 2014October 23, 2014 HandMeDowns8 Comments

The word Down syndrome first came into our world a little over two and a half years ago. In “I Didn’t Want Him“, I shared my initial reaction at finding out that the baby boy I was carrying would be born with Down syndrome. I know that everyone copes in different ways; some do it better than others. I did the best I could but, despite my best attempts at appearing brave and nonchalant when it came to the number of my sons chromosomes, there were times that my facade failed. One particular event occurred while I was at work, during the last few weeks of my pregnancy.

I had been caring for a wonderful family, who was welcoming a new baby into the world. The mom had shared with me her experiences with her young son who had Down syndrome. He was three, and she considered him to be the best thing that had ever happened to her. She eagerly introduced me to him when he arrived to meet his new sibling. I wanted to love her child as much as she did, but all I could see were his almond shaped eyes, his chubby fingers, wobbly walk and ungraceful attempts at signing “hi” and “baby”. I could feel my heart begin to pound and my breaths becoming shorter and more frantic. I excused myself and quickly made my way to the private bathroom on our unit. I murmured to my charge nurse that I would be back and asked her to keep an eye on my patient.

I barely made it to the bathroom before the dam broke and the tears flooded out. I sat on the floor, hyperventilating and sobbing. This was not a brave moment for me and my resolve was crumbling as every single fear and worry swirled through my head. The thoughts were unending, each one bringing with it an overwhelming sense of anxiety. Can I do this? Can I be the mom that he will need me to be? Will I ever get to the place where I can tell a stranger that he is the best thing that ever happened to me? Will there come a time that I only see my son and not Down syndrome? Will the bravery that I appear to have, ever be real?

I wish that I could travel back in time to huddle there in the floor with my past self. I would take her face in my hands, look her in the eyes and tell her that all the answers were YES. Tell her that as soon as she holds that little boy in her arms, all her worry and fear would fade away. That the only thing she would see when she looked at her son for the first time would the blue eyes that his daddy gave him and the button nose that she gave him. That she would be amazed at how much he looked like his sister. That in one short minute, she would know, without a shadow of a doubt that she didn’t need to be “brave”, she just needed to be Mommy.

I wish most of all, that I could tell her, the way she would feel with each of his firsts. How she would have to hide the camera to catch him turning over. How his motivation to belly creep would be a Taco Bell taco. How she would cheer when he signed “eat” and “more”. How loud she would scream, on camera, when he stood and took his first unassisted steps. How the tears would stream down her face when he looked at her and called her mommy for the first time. I didn’t get a visit from my future self that day. I did, however, put myself back together and return to my patients room. I knelt down near that sweet boy and asked if I could give him a hug, he willingly obliged. Try as I might, his mom could see through my mask of serenity, she squeezed my hand and whispered, “You’ll get there”.

I cant tell you how, because the route is different for everyone. Its possible that it will take some longer than others. There might also be days, that feelings sneak in so quickly and fiercely that they cause you to question where you are and if you will make it. Maybe you’ve made it there already, then again, maybe you haven’t. Regardless of what point the path you’re on, I want to say, YOU will get there too.

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I Didn’t Want Him

September 20, 2014October 23, 2014 HandMeDowns2 Comments

The great thing about thoughts, is that no ones knows you’re having them. The fact that no one knows your thoughts can also leave you in a frightening and lonely place. Especially the thoughts that may shock those around you, the thoughts that leave you feeling guilty, the thoughts that you immediately feel shamed for thinking. Sometimes a situation arises and no matter how hard you try, you can’t prevent these thoughts from flitting through your brain faster than lightening. I’d like to share with you my scary secret thought, that to this day still haunts me.

It was March 21, 2012. It was rainy and dreary outside, I was alone in my car, pregnant with my second child. I had just found out that we were having a baby boy and I didn’t want him. Please, before you judge me, let me explain….

On February 14th, my husband, and I excitedly waited in a dimly lit room. We were expecting our second child and were eager to see him or her for the first time. A quick swipe of the ultrasound wand revealed a very small black and white wiggling baby. Various measurements were taken, pictures were printed, the technician quietly left the room and the doctor came in. He informed us that there had been some abnormal findings on the ultrasound; he explained that our baby had swelling everywhere. He went on to tell us that the chances of the pregnancy continuing another three weeks was slim, chances were very high that we would lose our baby. Utterly devastated, I clutched the photos and sobbed. We went home to wait.

God knew my heart and He knew my needs before I ever did. He placed a man in my life that did not have Thomas like faith; my husband. Josh’s faith swelled; he wrote out numerous healing scriptures for me to speak over the baby, fasted until our follow up ultrasound twenty one days later. We surrounded ourselves with Godly people and stood on faith that God would see us through. Our follow up appointment proved the power of prayer. Our baby was growing and thriving, showing no evidence of prior anomalies. We chose to move forward with an amniocentesis to confirm that there were no issues.

On March 21, 2012 I received a call from our doctor to call him back when I left work. Feeling confident that our prayers had been answered, I alerted josh that our results were in. I was confident that I could handle the good news on my own and quickly disconnected. I cheerfully answered and listed to what the perinatologist had to say; “The fetus has a chromosomal abnormality”. I couldn’t breathe, my heart pounded in my ears and my smile vanished. Sobs and tears consumed me, the word “abnormal” echoed through my head attempting to drown out everything else he was saying. “There is a third copy of the 21st chromosome, the fetus has Down syndrome. You will need to come in ASAP to make plans.” I murmured my goodbyes and hung up.

I was shattered; I clung to the steering wheel and sobbed uncontrollably. I thought back through the conversation; I knew that there had been a mistake. He had called the wrong patient, or had the wrong labs. Somehow, I managed to ask him if I was having a boy or a girl, “I believe it’s a male” was the detached response. It, fetus, abnormal, Down syndrome, I couldn’t understand how this was happening. We had prayed, fasted, believed; we had bigger than a mustard seed faith! I could barely bring myself to call Josh, I felt I failed him and my family. Guilt and anger overwhelmed me. In that moment, in the car by myself, I didn’t love the baby that was growing inside my belly, fighting so hard to be in our lives.

I slammed the car in reverse and backed out. I glared through my windshield, looking up into the grey sky, I imagined God looking back at me. “I cannot believe that you would do this to us. You have NO idea what you’re doing! You tell us to trust you, to have faith, and then you go and do something like this, you missed your chance God, how could you?” The blame wasn’t mine, this was Gods fault, and I was furious with Him. I’d love to say that the scripture “your sorrows may last for a night, but your joy comes in the morning”, was true for me, but it wasn’t. I was barely able look at Josh or our daughter the next day, feeling like somehow I hadn’t given them the son or brother I thought they needed. I broke down every time I felt the baby stretch reminding me that every single cell of his was “abnormal”. Every kick brought with it the fear of the unknown and guilt over the detachment I felt.

(Concluded in “I Couldn’t Fathom Losing Him”)

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I Couldn’t Fathom Losing Him

September 20, 2014October 23, 2014 HandMeDowns2 Comments

Continued from: I Didn’t Want Him

We shared the news with family and began moving forward; however my anger at God had not dissipated and I reminded Him often. Just over six month pregnant, I was taking a moment to mentally glare and grumble at God. I was suddenly so overwhelmed with such a fierce love, a severe longing and desire to have my baby that it brought me to my knees, sobbing. I wasn’t frightened by his movement anymore; I was terrified of never feeling it again. I wasn’t overwhelmed at the possibility of difficulties in the future but overcome with the absolute want and need to have a future with this baby. For Abi to hold her brother, for josh to meet his son, to hold him in his arms and tuck my nose into his neck and breathe in the scent that would be so uniquely Gabe. I WANTED my baby. I knelt begging for forgiveness and praying for my son. I was no longer angry, but I still wanted to understand why? The answer that I FELT was clear, Lazarus. I found a bible and began to read.

Lazarus and his two sisters; Mary and Martha were beloved friends of Jesus and he often stayed with the family when his travels brought him through Bethany. Martha often served as hostess and Mary spent time listening and learning from Jesus. Mary even acted with extravagant abandon and devotion, when she used perfume, costing a year’s worth of wages, to wash Jesus’ feet, unknowingly anointing and preparing him for his upcoming burial.

In John chapter 11 we discover that Lazarus has fallen ill, his condition is so concerning that the sisters send word, imploring Jesus to return and heal their brother. Despite the fact that Jesus loved the family very much, he remained where he was for two additional days stating in verse 4 that “Lazarus’s sickness will not end in death, no, it happened for the glory of God so that the Son of God will receive glory from this”.

When Jesus decided the time was right for him to return to Bethany, the disciples attempted to dissuade him, expressing their concern over the risk that he was taking traveling through the area where so many were scheming for his destruction. Jesus was unmoved and shared with them in verse 11 “Our friend Lazarus has fallen asleep, but now I will go and wake him up” seeing the disciples confusion he continued “Lazarus is dead. And for your sakes I am glad I wasn’t there, for now you will really believe. Come let’s go see him.” When Jesus arrived in Bethany he was told that Lazarus had been in the grave for four days; by all appearances he was too late.

I stopped and reread; Jesus loved this family, but didn’t go to them, he let Lazarus die. I didn’t understand, Jesus had SAID that his sickness wouldn’t end in death. I could understand why leaving the work God had given him might not have been possible, but I couldn’t understand why he couldn’t have healed Lazarus anyway. In Matthew chapter 8 a centurion came to Jesus requesting he heal his servant, who was in bed at home. He knew that Jesus had the authority to just speak and it would be done. If Jesus did it for the centurion’s servant why didn’t He do it for Lazarus?

I kept reading; understandably Mary and Martha were devastated. Not only had they lost their brother, but I imagine that they may have felt a loss of hope. If they believed that their brother would not perish due to the awesome authority of Jesus, it must have come as an even bigger shock when he did succumb to his illness. Mary, Martha, their family and the community were grieving the loss of their loved one when Jesus arrived. Martha and Mary, each in turn, went to him saying “Lord, if only you had been here, my brother would not have died”. To them, the chance for a miracle had passed away when their brother breathed his last breath. It must have been so difficult for them to understand, why a man who had performed countless miracles and had the authority to make the lame walk, give sight to the blind and a voice to the mute, let someone he loved perish.

Jesus knew Mary and Martha’s hearts; he knew that they believed the time had passed to heal Lazarus. Mary, Martha and the entire community stood wailing and grieving over the loss of their loved one. As Jesus stood witnessing this overwhelming grief, he was deeply moved and became very troubled in his spirit. John 11:33 describes his feelings as “a deep anger welled up within him, and he was deeply troubled”. I couldn’t understand why Jesus could be angry with Mary and Martha, he was the one who let Lazarus die. I am sure that he felt some frustration over the disbelief that he was witnessing in Mary and Martha, but maybe His feelings weren’t directed only towards those that were present. I believe that it was toward death itself; the pain and sorrow that had to be caused to ultimately bring glory to God.

Jesus was so troubled within his spirit over the situation that Verse 35 says that He wept. Jesus wasn’t weeping over the death of Lazarus, he KNEW that Lazarus had to die and be raised from the dead. He was weeping with and for those that he loved. Understanding the way Jesus felt standing outside Lazarus’s tomb, I was able to understand the grief that He must have felt when we received Gabe’s diagnosis; the sorrow that he had to have had over my devastation and anger when my prayer hadn’t been answered. How wrong I had been that day when I turned my eyes towards Heaven imagining a heartless and detached God, His heart had to be aching as much or more than mine at my sorrow and despair. It didn’t bring God any joy to not send the answer we were expecting.

Verse 39 finds Jesus going to the tomb and demanding that the stone be rolled away. His request met resistance from a concerned Martha, who still didn’t understand what was about to occur. She responded “Lord, he has been dead for four days. The smell will be terrible”. Jesus must have been further troubled knowing Martha was almost unknowingly refusing a miracle because she was concerned about the smell. Jesus could only respond to Martha by saying “didn’t I tell you that you would see God’s glory if you believed”. In verse 41 Jesus turned his face towards heaven and said “Father, thank you for hearing me. You always hear me, but I said it out loud for the sake of all these people standing here, so that they will believe you sent me.” Verse 43 then Jesus shouted, “Lazarus, come out”.

Lazarus was dead; his heart had stopped pumping blood to his organs causing them to shut down and stop working all together, the blood pooled in his body becoming thick and stagnant. He was not breathing; no oxygen was being shuttled to and from the lungs. Lazarus had been taken and prepared according to Jewish customs. His body cold and firm, wrapped from head to toe in burial cloth, laid inside a cave, covered with a large rock and left to decay for four days. Jesus called out to him, called him to draw breath and life back into body, for his heart to beat again; Lazarus stood and exited the tomb.

I don’t know why Gabe has Down syndrome; I don’t know why God chose this path for my family. I don’t know why bad things happen or why sometimes God doesn’t heed our call for help or rapidly answer our prayers. But I do that know Lazarus died. Jesus didn’t heal him from his illness; he grieved with and for those he loved. I also know that Jesus made an opportunity by not healing Lazarus; He had an opportunity to bring Glory to God.

Gabe is perfect; he is smart, strong and so sweet. He is joyous, inquisitive and gentle. He was born without complication and has had none of the medical issues and conditions that are so common for individuals with Down syndrome. He is growing and meeting his milestones. God didn’t miss an opportunity, he made one. When I look at Gabe I am reminded of Lazarus, I am reminded each day that of the opportunity that God has given us; one that has strengthened our faith, taught us unconditional love, and has brought Him Glory.

…I don’t know what your thoughts are, that’s a blessing and a curse. Maybe you’re in a similar situation, maybe you’re facing a prenatal or birth diagnosis of Down syndrome, or any situation that you just can’t seem to understand. You may not be the only one thinking the things your thinking, no matter how bad they may sound in your head. You know my thoughts now, and I hope you know that you’re not alone…

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