Feeling blue

If you read my blog because you like the inspiring, uplifting things I write about you may want to stop reading this post. Today is not one of those entries. Today I am depressed. I don’t know why. I’m feeling stressed and sad. I found the journal I kept for Cody when he was growing in my belly. I haven’t kept a journal for Eli. I started one, and then when we found out he had Down syndrome, I stopped. I was afraid he’d read it one day and think I didn’t love him. Actually, I was afraid he’d never learn to read or comprehend my words to him. I was looking back at what I wrote to Cody when I was 29 weeks (that’s how far along I am now with Eli). I wrote how I was so excited to meet him and couldn’t wait to hold him. I loved him so much already. Those words really hit me. In fact, they made me cry. I do love Eli. Very much. But I am afraid. I am excited to meet him and hold him. But I am scared. I am so fearful of what he will look like, what he’ll be like. Will he have complications because of his heart? Truthfully, I am worried. What if I give birth to him and love him so deeply and then God takes him from me? I am afraid to bond with him and I am afraid not to bond with him.

Last night, I got really sick. Scary sick. I thought something was wrong with the baby. But once I got in bed and settled in, Eli started kicking up a storm to let me know he was ok. I was thankful for that. I know I love him. Actually, I feel a deep love for him. I’m just so, so scared.

Everybody keeps saying how babies with Down syndrome are babies first. I have completely embraced that concept and sometimes I actually forget about the DS. But then I think about his heart. The most important organ in his body is broken. Yes, it can be fixed – with open heart surgery. My little fragile baby will have his body cut open so they can stop, and then repair, his heart. Ugh. Not fair. So is my baby with Down syndrome and a heart defect still a baby first? Or will his heart defect be the primary focus those first few months. Will we be afraid to love him with every ounce of our souls because we’re afraid he’ll be taken from us? I want to just love him and cuddle him and teach him and guide him. I don’t want to worry about all this other crap. I just wanted a healthy baby. But, I was given Eli. And I know I will see the blessing in that. I know we will fall head over heels in love. I pray that we will never feel the loss of a child and that that fear will not hold us back.

I saw a quote early on in our diagnosis that has been inspiring to me. It says, “I never knew I wanted a child with Down syndrome until I had one”. I hope in a couple of months to feel the same way. Until then, I pray that days like today are fewer and farther between. Please keep both Chuck and I in your prayers and good thoughts. I have a feeling the next 10 weeks may be filled with many emotions for both of us. Thank you. xoxo

Advertisements

Being old isn’t the “cause”

Over the weekend I was taking a walk through our neighborhood. I ran into a gal that also has a toddler. We were talking about our kids and then she asked when I was due. Somehow the fact that she was a special education teacher prior to her having her child came up. Because of this, I felt comfortable telling her that my baby has Down syndrome. Her response wasn’t what I had expected from a former special educator. Those that I have told in the past have acted almost like I told them my child will have red hair – no biggie. She, on the other hand, gave me a sympathetic smile followed by an “oh, how old are you?”. Um, excuse me? The question caught me off guard so I actually fumbled over my words when I responded with, “36 at delivery, 35 at conception”. She then went on to tell me that her and her husband are trying for their second child and because she’s 37, Down syndrome is a big concern. I informed her that anyone can have a baby with
Down syndrome but the odds are always in your favor to not. I wished her luck and continued on with my walk.

Quite honestly, that conversation pissed me off. I hate having the misconception that because I’m of “advanced maternal age” I caused our baby to have Down syndrome. I feel like people might think it’s my fault and that I was just lucky with my first – I shouldn’t have pushed the envelope. That we “deserve this” because we’re “old”. The whole thing really upsets me. To think that there was anything that I could’ve done to “cause” Eli to have Down syndrome devastates me. People have actually asked me if there was any way we could’ve “prevented this”. Uh ok. That question usually doesn’t even get a response. What do you say to complete ignorance? (That reminds me, I need to come up with a witty response to that question!) πŸ˜‰

I do want to help spread the word that Down syndrome doesn’t just happen to babies of “old” parents. (I keep putting that word in quotes because I don’t think 36 is old and I certainly don’t feel old!) Ask the gal who at 18 is due with her first baby girl, who has Down syndrome. Or the 25 year old mom who just had her third boy, who happens to have Down syndrome. Or the 27 year old mom who underwent fertility treatments before becoming pregnant with a baby who also has that extra 21st chromosome. There’s many other stories out there like that. One of my fears for the future has been the stares my baby will receive and then the look up at me to see if I’m an old lady who was out of place having a family at this “advanced maternal age”.

Here is some information I pulled from the March of Dimes website:
At age 25, the risk of having a baby with Down syndrome is 1 in 1,250.
At age 30, the risk is 1 in 1,000.
At age 35, the risk is 1 in 400.
At age 40, the risk is 1 in 100.
At age 45, the risk is 1 in 30.

Even though the risk is greater as the mother’s age increases, about 80 percent of babies with Down syndrome are born to women under age 35. This is because younger women have more babies than older women.

When I first was given odds (before any blood tests or ultrasounds) they were 1 in 800, just based on my age and previous healthy pregnancy. Even though my risk went up with age, I’d bet those odds in Vegas – as would most people. When our odds went way up to 1 in 3 (after the prenatal testing) I still would’ve taken those odds. There was a 66% percent chance our baby would not have Down syndrome.

Down syndrome can affect any family. 1 out of every 800 babies born in the US has Down syndrome. That’s 3,400 babies a year. That number would obviously be higher if less people chose medical termination when faced with the prenatal diagnosis. Come October, our family will be blessed with one of those 3,400. When you meet me out on a walk/at the store/playing in the park with my two beautiful boys, please don’t ask my age. Please don’t ask what I did to “cause” this. I ask you not to judge my child and I beg you not to judge me.

A brand new day

We went in for another level 2 ultrasound on Tuesday. Our little boy was very active. The doctor was impressed with his muscle tone and his strength. Everything looked great! Even his heart!!! Dr. Case did confide in us that at the 17 week scan he was quite concerned that what he suspected to be a heart defect (Atrioventricular Septal Defect, or AVSD) was going to be a large one. So we went in to the scan hoping for good news but expecting the worst. For once we received good news!!! The defect, if there even is one, is very small – so small in fact he’s not even sure if it’s there. We have another ultrasound scheduled for July 31, I’ll be almost 27 weeks then, to see if it’s actually there or not. If it is, or if it’s still inconclusive, we’ll get an echocardiogram of Eli’s heart done at Children’s Hospital in Seattle. I am so thankful for the wonderful doctors that are along this journey with us. They truly have our son, and our family, in their best interest. I can certainly feel the love.

If you asked me a month ago, I would’ve said I regretted finding out that Eli had Down syndrome prenatally. It took away the joy of the pregnancy. Instead it was filled with worry, grief, and anger. Today, I am happy to report, the joy is back! I love feeling my baby boy kick at me. I giggle when he has hiccups. I love hearing Cody tell people Mama has a baby in her belly. I no longer try to hide the fact that I’m pregnant by wearing baggy sweatshirts (thank goodness since summer has finally arrived in Seattle!). I proudly shop for maternity clothes and will talk about Eli to anyone who asks. I will talk about Eli. I may or may not talk about the Down syndrome. That is just a part of him. It is not all of him. He is my baby and I am so proud of him. So proud that his kicks are strong. So proud that he impressed the doctor. So proud to hear his strong heartbeat. I have a feeling this is only the beginning of things he does that make me proud. Today, I am one proud mommy of both my boys.

20120706-093701.jpg

20120706-093734.jpg

20120706-093748.jpg

Everything will be ok

So I’ve been struggling the last few days. I have this overwhelming feeling to pack up my little family and run – run far, far away. That obviously won’t fix anything since I’m pregnant and my worries are all about my baby growing inside me. I feel like I’ve been in denial. Like I’ve just been saying how accepting we are of this whole thing because that’s what everybody wants to hear. I want everyone to see how ok I am with all of this. And most of the time I am. But all of a sudden I’m filled with anxiety and fear again. What if we don’t have all the support we thought we were going to have? What if we can’t afford to provide all the care needed for our baby with special needs? What if…

On the beach last month Chuck and I promised to stay in the moment and not worry about the future so much. In theory, that’s a wonderful idea (and it’s worked thus far), but you can only ignore your fears for the future for so long. At first our fears were centered around the very distant future – Would our son live with us forever? Could he get a job? Get a high school diploma? Go to college? But then we realized we didn’t know anything about our Eli besides the fact that he has Down syndrome. Why worry about things we have no way to predict? We’ll do everything we can for Eli so he has the best possible life, and future. But now my worries are more centered around the next few years. Will he walk? Talk? Be able to feed himself? Will I have a
“toddler” for the next 5+ years??? I adore my oldest son, Cody, but we’re only at the beginning of the toddler stage and it’s challenging! I don’t know if I can do this for a few extra years, or worst yet, forever. I worry about how different our lives are going to be. I like our life now. I don’t want it to change drastically. What will that do to Cody? Will I be able to give him even half the amount of attention he gets now? I want to focus my energy on getting my baby well (he has a suspected heart defect – an ultrasound will either confirm that suspicion or give us great news on July 3rd). How can I focus on one child without taking my focus off the other? I’m sure this is a concern of many moms facing the birth of their second child. And I know it’s normal and obvious that the first child will not get all the attention of the parents anymore. But our case is different than most. What if Eli needs to spend extended time in the NICU at birth? How do we spend time bonding with Eli and keep Cody feeling secure and comforted? We are a very attached family. He’s never spent the night away from us. He’s only been with a babysitter (his Nana or his Grandma) a few times for a few hours. Everyone says how unhealthy that is for all of us but we just like being together. Now I’m scared that he will feel abandoned when Eli arrives.

I remember the overwhelming fear that hit me the night before my scheduled c-section with Cody. We were cuddling with our two dogs and I said to Chuck, “I don’t want our lives to change. I like it the way it is!”. I laugh thinking back to that night because our lives are so much better now! That next morning my heart exploded with love for my new baby. I have never experienced a love so great. I keep trying to remember that. I was fearful of change before Cody’s arrival. I’m fearful of the change that will occur with Eli’s arrival. Will it be different? Of course. But my heart has room for more love.

I’ve heard it said that once you receive this diagnosis for your child you go through a mourning period, grieving the loss of the child you thought you were having. Sadly, I am all too familiar with grief. I know it goes through stages. I know it comes and goes. I will not beat up on myself for going backwards in my grief. I know tomorrow, or next week, or next month my feelings will once again be different. I am so thankful we received Eli’s diagnosis prenatally. Many people have to deal with this roller coaster of emotions all while trying to bond with and care for their baby when they find out at birth that their child has Down syndrome. I can only imagine how difficult that must be. So, I am grateful to be able to go through this now, when Eli is completely unaware. I pray that when he arrives my heart will once again be exploding with love and everything will truly be ok.

The kindness of a community

We had a wonderful day yesterday. We met with a lovely family that has 5 year old triplets, one who has Down syndrome. This beautiful family opened their home to us, complete strangers. It was reassuring to see how “normal” their day to day life is – well as normal as life can be with 5 year old triplets! The mom, Sheila, made it all look so easy. But she was completely honest with her struggles and what challenges they’ve faced.

I was a bit nervous before meeting with this family. I haven’t been around a child with Down syndrome before. Would I act uncomfortable? Say something inappropriate? Cry? (Seems silly but shortly after Eli’s diagnosis, Chuck and I saw a little girl at Costco who had Down syndrome and we had to leave because it upset us so much). Thankfully, this was not to be the case this time. We have changed, evolved in our feelings, and accepted.

We were welcomed by the whole family at the door. The triplets consisted of one boy, and two girls, one who had Down syndrome (Olivia). They had drawn pictures for us right before we arrived. So sweet! Olivia told us “bye bye” and then retreated to her room for a bit. She tends to be a little shy/uncomfortable around people she doesn’t know. We gave her some space and got comfortable playing with some toys on the floor. Cody warmed up quickly when he found a helicopter to play with. I was unsure how the conversation would flow but Sheila made us feel super comfortable and was basically just an open book of information. After some time, we went upstairs to Olivia’s room to check on her. Within minutes she grabbed my hands to play Ring Around the Rosie. I guess I passed the stranger test! Soon her and I were dancing to the Beatles. She is delayed in her speech but communicates through sign language. Her mom highly recommended it for our family since most children with Down syndrome have some speech delays. She especially thought Cody could benefit greatly from it so he could communicate with his little brother. She shared with us that most children with Down syndrome use signing so it’s a good way for them to stay connected with their “peeps”. πŸ˜„

One story Sheila relayed was how when her and her hubby were pre kids they hired a housekeeper. It is common practice to give the housekeeper, a total stranger, keys to their house. They wondered if this was a safe thing to do. They laugh about that now. You see, here we are on a Sunday morning, standing in her kitchen, complete strangers. She opened up her home and her hearts to us. She let us play with her children. She welcomed us into the “family”. The Down syndrome community has shown their kindness to us in more ways than I can count – and we’ve only been a part of this “club” for a couple of months. It’s a community that I didn’t think I wanted to be a part of but am now so happy to be welcomed in to. Maybe it’s that parents with children with special needs have to be compassionate, understanding, and kind. Maybe it’s that many can remember being in our shoes at one time and they can recall those strangers, that soon became friends, who helped them along the unknown path. Whatever their reasons, we have met some of the most gracious people in the start of our journey. I can only imagine the friends, who we’ve yet to meet, waiting for us in our future.

We finished the day by celebrating my mom’s birthday. Everyone keeps telling me how strong I am and that I’m a good mom (thank you!). I am the mom I am today because I learned from the best. My mom is the most giving, selfless, loving person I have ever met. She accepted Eli and his diagnosis immediately. She has been a rock of support for Chuck and I. If I can be to my children what my mom is to me, I will have succeeded greatly. Happy Birthday Mama! We love you.

20120625-170132.jpg

20120625-170149.jpg

20120625-170207.jpg

No Judgement

Please don’t judge me. I have been sent on a journey that I pray others will never have to go on (but I know some will).

Something this experience has taught me is to judge less. I’ve always been a pretty judgmental person. Although, in talking to others, I’ve realized most people tend to be pretty judgmental too. I guess that’s just the way society is. I’m hoping to change and live my life in a less judgmental, more accepting way from this point forward.

When we first started the process for prenatal testing we honestly did it just to get the better ultrasound to find out the gender (you do all the prenatal testing at a specialist office that has fancier ultrasound equipment). At our first ultrasound appointment with Dr. Case (our amazing Radiologist) he mentioned that our baby’s nuchal translucency fold at the back of his/her neck (we didn’t know he was a he yet) was measuring “a little high but not out of the normal range” (it was 2.6 – up to 3.0 is considered “normal”). That put my odds of having a baby with Down Syndrome at 1 in 220. He said they’ll know more after the blood work but that he was sure it was fine. We mentioned that it didn’t matter to us either way as we’d keep our baby regardless.

Fast forward a week or two (at this point, timeframes are a bit of a blur) to May 1. We received a call from the genetic counselor saying that the blood work came back abnormal and that the odds of our baby having Down Syndrome were now 1 in 3! Um, what?!?! I didn’t expect to hear that. I was hysterical. Chuck came home from work and we made an appointment with the genetic counselor right away. She informed us that 90% of Down syndrome pregnancies end in medical termination. 90%?!?! What?! I honestly didn’t think it’d be that high. We stated that we would not be choosing that path but then again we did not have a positive diagnosis as of yet.

We wanted the opportunity to prepare if our child did in fact have Down syndrome, so we opted for further testing. We decided to do the new MaterniT21 blood test. It’s a less invasive alternative to an amniocentesis with the same accuracy. We waited 8 very long days for the phone call from the genetic counselor telling us the test was positive. We set a meeting with her for the next day so we’d have a day to process the positive results. I honestly don’t remember what we discussed at that appointment besides the “decision we were facing”. I wish I could say that we were still as adamant about loving and keeping our baby regardless of diagnosis but as you may have read in the previous post, we were devastated and grief stricken. I was hung up on that 90% number. I asked every doctor we met with why it was such a high number. Each had different answers. One said it was based on geographic location. Another said it was based on ethnicity. One said it wasn’t that high, maybe only 60%. Honestly, I don’t think the study that put out that 90% number is very accurate, but I personally haven’t taken any polls.

My point in all of this rambling is that you cannot, and should not, make judgements unless you’ve walked in someone’s shoes. The decision to keep our baby was the hardest decision I hope we ever have to make (but I’m guessing it won’t be the last of hard decisions we will have to make). We had to think about the quality of life for our baby, for our older son, for our family as a whole. We had to think of the financial aspects and whether or not we were emotionally capable of caring for a child with special needs. Our choice was one in the minority. We know this child was sent to us because, even if we don’t have faith in ourselves, God has faith in us. We have accepted the challenge, but many people do not. And regardless of your stance on abortion (pro choice or pro life) those people should not be judged or looked down upon. Just like we shouldn’t be celebrated for choosing the opposite. For parents, who are in the midst of a planned and wanted pregnancy, having to make a decision like this is cruel and unfair. We spent many sleepless nights wondering, thinking, worrying, debating – as I’m sure most parents who are faced with the same decision do. Many people know right away what they’ll do. Many people think they know what they’ll do. We knew, but we had to go to the depth of our souls for confirmation.

We are grateful for our little boy, extra chromosome and all. We can care for our son and provide for him. We know that our family will be whole with him. Will we face challenges? Most definitely. But we will face those challenges the same way we’ve faced other challenges in our lives – together.

Acceptance

May 8, 2012 at 1:15pm our world changed forever. We got the call from the genetic counselor that we had been dreading. The baby I have been carrying for 15 weeks, is not healthy. He/she has Down Syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine, eat foods I’m not supposed to. Why me? Why us? Cause I’m old? But I’m not old! I’m only 36. What will this do to our family? I’ve gotten mad, sad, anxious, confused. Will I be able to love this baby? What does their future hold? Bullying, dependence, frustration? What does Cody’s future hold? Constant defending? Other peoples intolerance? Jealousy? What does our future hold??? I can’t even go there right now. Everyone assures us that they’ll love the baby regardless and that they’ll always be there to support us. Will they? Will we? Can we? I have felt thoughts that I never thought I could feel about my unborn baby. Those thoughts make me angry, sad, and feel very un-mommy like. I’ve prayed for forgiveness of those feelings. Can I handle this? Can Chuck? Will our marriage survive? Is it worth risking? Right now, I don’t know the answer to those questions. I pray for clarity, for love, and for acceptance. I pray for peace. I pray that everything will just be alright.

I wrote that journal entry a few days after we found out that our baby has Down syndrome. It makes me sad to read it now. I felt so out of control. So desperately trying to understand what was happening. I’d go to sleep and wake up not remembering if it was a dream or real. I would pray it was a dream then remember it was not. We cried a lot. We stopped praying. We felt betrayed by God. We worried and worried and worried. We grieved for the child we thought we were having and didn’t know if we could ever come to terms with the child we were given.

After three long, insufferably challenging weeks my eyes were finally opened when my OB doctor (of all people!) quoted the bible during an appointment. Jeremiah 1:5 “Before I formed thee in the belly I knew thee;…”. All of a sudden, it all made sense to me. We were chosen by God to be this child’s parents. He knows we are capable of loving this child unconditionally. He picked us for him and him for us. I walked out of that appointment knowing everything would be ok. There was a feeling of calmness and acceptance that was such a new, welcomed feeling for me. Chuck still wasn’t there. He was still depressed. I feared he may never get to a point of acceptance like me. What if he never did?

A few days later we named our son. Eli Michael. There is a lot of meaning to his name that I won’t go into right now. But now our baby, our son, had a name. He was real. No longer just a scary diagnosis to us. He became ours.

We spent the following weekend on the Washington coast. If there’s a wonderful place to reflect and gain insight, it’s the beach. We were surrounded by peace. We were filled with love. As we took pictures of the three of us on the beach I had an overwhelming feeling that our family was going to be what it was meant to be. The four of us. Me, Chuck, Cody, and Eli. A family that was chosen. I took a picture of Cody playing on the beach. When I looked at the image on my camera I could not explain what I saw. Instead of one shadow standing with Cody, there were two. I just knew it was Eli. I just knew we’d be ok. That weekend was the best weekend of our lives (so far). We both accepted the child we were given. Not only accepted, but embraced.

20120621-155917.jpg

20120621-161405.jpg