Every once in awhile, I’ll look across the room and David will be sitting or playing on the loveseat in our living room. It is such a beautiful juxtaposition for me. That is the loveseat Jason & I sat on the day we received our prenatal diagnosis of Down syndrome for David. We told Jason’s mom the news on that seat. Jason sat in silence with tears running down his cheeks on that seat. We sat underneath a cloud of sorrow on that seat. We were confused and scared and overwhelmed on that seat. I don’t think I’ll ever be able to think about that day without thinking about the loveseat and the shock and grief we experienced there.
And now there’s today. Almost two and half years to the day after receiving our diagnosis. Every single thing has changed. We still have the loveseat, but it’s filled with joy. Our biggest surprise and sweetest blessing plays on that seat. It is truly a seat of love (yep, I went there)
I won’t waste time on this beautiful day apologizing & making excuses for my lack of writing. Instead, know that I vow to be better.
Is there a better day than Mother’s Day to reflect on those that ‘made’ you? Without my children, I wouldn’t be a mother. Each birth experience has reminded me of the miracle & responsibility of being someone’s mother and since I’m still fresh off a birth experience & deep in the haze of my post-partum hormones, I’ll use the excuse to get all sentimental about the three beings that created this new identity for me.
Today, I am grateful for the ups and downs of raising human beings. I am tucked into a hotel bed in a room near a river (creek?) in Valentine, Nebraska. I’m supposed to be celebrating this day with my own mother 150+ miles from here but Midwestern weather has a mind of her own so instead, I’m full of local pizza & cheap wine while I write and listen to the sound of four snoring, sniffling, squeaking & breathing Oulmans around me.
We have spent over 15 hours in the car over the past 3 days and there have been many, many tears in the process (including mine). Our weekend reads like a Greek tragedy where the only manageable solution is to laugh manically through the tears.
It’s tough being mama to three (or 1, 2 or 4+). It’s even tougher when they’re sick or snarky or spitting up – you know, being children. It’s exhausting & beautiful and the greatest gift I’ve been given. I am accutely aware that not everyone receives this gift. Not all mothers have children. So what a blessing to be tucked in with legs draped over mine & toys and clothes strewn about our room. What a blessing to be exhausted from changing a million diapers and answering a million questions. What a blessing to be hugged and kissed and ignored and screamed for all within an hour. What a blessing to be a mother.
Yesterday, I had my first break down since David was admitted. I called up to his room to chat with his nurse and ended up sobbing and sobbing. Like any parent, I want answers, and more importantly I want results. At this point it seems like they are doing everything they can and yet he’s still on just as much oxygen, with just as much pressure. At this rate, we could be in the hospital for a month! I mean, who hasn’t been battling a cough and phlegm for weeks now? I have! And I’m relatively healthy and have strong lungs. Poor David already starts at a disadvantage and has small, compact lungs. While he’s not regressing, he’s certainly not progressing and that leaves Jason and I feeling helpless.
David is happy, he’s engaging. He’s having dance parties with his visitors and he misses us. This whole stay may be “easier” to take if he at least appeared sick. If he had a fever and was lethargic and fussy, we may think, “Ok, he’s really sick. He needs to be admitted.” But he’s his happy, giddy self. He’s flirting and smiling and winning hearts each day. We miss him! We want him home.
I will not speak for the rest of my dear Down syndrome community. The following is simply my own personal views and experience. This is the part of Down syndrome that is hard. David is not hard. David is a delight. And there are many kiddos with Down syndrome who don’t have the health issues that David and others have. For them, the difficulty is with IEP’s and inclusion and milestones. And I am sure that is hard. I’m sure that’s exhausting and frustrating. But today, I would take six more hours on the phone fighting with Medicaid (which, sadly, is also part of my norm) over another day in the hospital. Down syndrome is nothing like I thought it would be. It is more rewarding and more challenging than I expected. But it’s the health issues that provide the greatest challenge. It’s the idea that this could be forever. Not a lifetime hospital stay, but we could expect to be hospitalized at least once a year for life! That’s exhausting.
Today, keep praying for us. Pray that David turns a major corner. Pray that all the suctioning and oxygen finally click and his body starts to heal. Pray that Jason, Ella & I can continue and be encouraged. Pray for our rest, health and bodies (we’re all a little sick) and pray that this is David’s only hospital stay in 2015.
“The Lord will fight for you; You need only to be still.” Exodus 14:14
I know this blog is about David but today I’m taking a time out to talk about my other pride & joy. My first born, the daughter I dreamed of but never allowed myself to truly hope for, the girl who drives me to tears, fits of giggles, forces me to get alone time by locking myself in the bathroom but rush to school every afternoon to pick her up. She is the most intense, stubborn person I have ever met and takes after her dad so identically sometimes I don’t know what to do with either of them!
Lately, I’ve been focused on the “difficult” parts of her personality. She is defiant, she is stubborn, she is moody, she is intense. On a good day, this makes her fun & full of life. On a bad day, I have no choice but to drop her at a friends and wander aimlessly around Trader Joes with a Starbucks in hand just to decompress.
Ella had been asking to ice skate for awhile. There was a rink that was having a DJ, prizes & ice skating day so I decided to bring her and David while Jason was at a men’s conference at church. As soon as we got there, I got nervous because I realized I had to stay with David and so I couldn’t skate with her. She was excited to try even without me so we rented her her skates and helmet and put her on the ice. At first she clung to the railings while David and I walked alongside her. But after 10 minutes she started getting more comfortable and started letting go. She would try and skate a step or two at a time before she would cling to the railing again. After one loop around the ring, and her hanging onto the bars for most of it, I thought she would be “over it”. It was lunch time, I was hungry and so I told her just 10 more minutes. Ten minutes turned into hour and a half! She loved every second of it and I couldn’t get her off the ice. By the end she was skating 10 to 12 feet distances all by herself, not hanging on to anything! I was so damn proud, I literally couldn’t stop smiling. The entire day she kept turning to us smiling and saying “Mama, I’m doing it!” I don’t know if I’ll ever get her sweet little voice out of my ears and I pray I never do. She was full of such exuberance, such excitement, and such intense determination. By the end, she was trying to practice turning. She was amazing! There were times she cried, times she got frustrated, but every time I asked her if she wanted to stop or come back to the rail, she said no and kept right on trying.
This weekend, I saw another side of her spirit. Determination. I don’t think I realized how determined she is because I always saw it as defiant. My heart was literally bursting with pride and I pray that from here on out, when she’s being difficult, I can remember that it’s maybe a little more about determination and cut her some slack.
I’m so incredibly grateful I saw that side of her. More importantly I’m so incredibly grateful I noticed. What a blessing to her to have her mother see her not as difficult but as disciplined. I’ll take a disciplined child over a genius child any day (although I happen to think she’s both). I thank God for my “spirited” daughter and the humbling lesson in seeing the positives in people instead of the negative. Go Ella Grace!
There are a million things that can go through ones mind when you get a positive pregnancy test. For many people, it’s excitement. For some, it’s dread and denial. For a select population, it’s fear. Fear is honestly such a normal part of pregnancy but I’m going to speak specifically to the population of women that only experience fear.
For any woman who has had a traumatic pregnancy event, fear is practically the only emotion experienced when seeing a positive pregnancy test. After a miscarriage or still birth or infertility diagnosis, the rose-colored glasses are off. Gone are the days of running excitedly out of the bathroom to show your partner the little stick. Excitedly calling parents & best friends are a memory if they ever existed at all. You are filled with a fearful hope and begin preparing yourself for the inevitable loss rather than get swept away in dreams of the future.
There’s another group of us that fall into a similar category – Moms who are pregnant after a special needs diagnosis. We’ve seen the “other side”. We’ve gotten the call or sat in a somber room. We’ve met with professionals & heard the statistics. And regardless of how blessed we feel to have our “special” kiddos, there’s a fear that rests in the back of your heart. At every appointment and visit, we’re waiting for the other shoe to drop. We’re waiting for a similar yet completely different diagnosis. Cleft lip? Missing limbs? What surprise issue will this new little one have? It can be scary to even hope for “typical”.
I was chatting with a fellow therapist recently about my current pregnancy. I was quick to dismiss my feelings of anxiety & fear but she stopped me. She reminded me that my pregnancy with David was traumatic and I don’t need to minimize it. I love my son & wouldn’t change him for the world but that doesn’t mean I didn’t experience heartbreak during my pregnancy with him. It definitely doesn’t mean that I’ve accepted anything that comes my way & by default this latest pregnancy has been blissful and calm. Quite the opposite! I look back on my youthful naivety when I was pregnancy with Ella and almost laugh. In comparison, this pregnancy has been quiet. That’s the best way to describe it. We’ve been reserved, haven’t made any major announcements or even told everyone we know. We kept it to ourselves & didn’t even tell our parents until the end of the first trimester and our blood work testing for all Trisomies had come back negative.
It’s been a journey. It’s been emotional. It’s been a process. Every day we get a little closer to calm & blissful. We are more than delighted to be surprised blessed again & know we’re lucky. But I don’t want to minimize the journey. I don’t want to put on a brave face and be inauthentic. I think that’s detrimental to other moms. It’s ok to be scared. It’s ok to feel overwhelmed. Pregnancy doesn’t have to look like a TV commercial. It can be messy with lots of tears. There is no shame in taking each day for what it is and trying again the next day. This is our journey and we get to determine what it looks like, tears, fears & all.
There are a lot of components to being a special needs mom. It’s a balancing act of treating your kid like “everybody else” and managing all the nuances, therapies and appointments that make them “special”. You don’t want to treat them differently and yet their situation calls for different. You don’t want to talk endlessly about one child but you feel like you have to enlighten everyone about your child’s specifics.
As you all remember, I did not want to be “that mom”. I didn’t want to be an advocate for Down syndrome or start every conversation with, “My son has special needs . . .” But I’ve become her. I wear my sandwich board & ring my bell proudly, probably annoyingly. I have become David’s biggest cheerleader and a fiercer mama-bear than I expected. I have turned into a highly educated advocate (Well, highly educated for 16 month olds or younger. I know nothing about school, inclusion, IEP’s, etc. But that’ll come)
With the rise of genetic research and developments has inevitably come genetic testing. Just this week news broke of a couple who utilized fertility treatments in order to select their babies gender. Families are finding out very early in the first trimester if their children have genetic abnormalities and are given the option to terminate practically simultaneously with the results. The age of designer babies is here so where does that leave David & his peers?
I’ll tell you where it doesn’t leave me. In the judgement zone. People assume because we had a prenatal diagnosis and continued on with our pregnancy that I have strong feelings against termination. But I don’t. I have strong feelings toward education. I think the information that is out there is dated and scary. I think parents are terrified of the unknown. I think technology moves faster than human emotion. And more importantly, I think it’s not my place to judge. David is a lot. Strike that, David’s schedule is a lot. His needs are more extensive and the impact of his life has had an emotional affect on me. But truthfully, he is my easy child. He rarely cries, he calms easily and he’s perpetually joyful. When I hear parents say they couldn’t handle the difficulty of a special needs child, I don’t judge, I just know they haven’t been educated. Saying that is like saying it’s too difficult to schedule pediatrician check ups, pick proper food or buy diapers. All children have needs. A special needs child’s are just different. Not more, not less, just different.
So I’m not defensive about my decision or anyone else’s for that matter. I just really stepped up my offense and decided to rock parenting. Not special needs parenting, just parenting. Turns out food, clothing, shelter and love work for “special” kiddos too.
Here’s a little secret to perk up your day. If you search #theluckyfew on Instagram, you’ll be lost for hours in the joyful, cute, stubborn, funny and unique pictures of individuals with Down syndrome. I stumbled upon the tag early after David was born & I’ve used it myself a few times. Those of us who love someone with Down syndrome really do feel we’re lucky. We’re part of a secret club. Remember when I was desperate to be kicked out of that club?! My gosh how things have changed! I truly don’t know if there is a day that has passed since David was born that I didn’t feel lucky. Through the NICU stay and the surgeries, the PICU stay and more surgeries and this spring when we spent more time at the hospital than at home, one giant smile from my sweet boy & I immediately think, “Damn, I’m lucky.”
We are fresh off a month of thankfulness & counting our blessings and just beginning a month of hope and advent. I sit in awe that I have been entrusted with these little beings. I am overwhelmed at the responsibility and blessing that has been given to me. I know I wasn’t “chosen” for this role but man am I blessed to be inducted into the lucky few.
Day twenty-nine: I know there are many people who don’t like surprises; I’m not one of them. I love surprises. Planning them, being surprised, surprise parties, even just general knowledge of surprises – I love them all. (Scratch that, I love good surprises) I think they’re fun and exciting. They’re usually celebratory and for a specific purpose. They often lead to amazing memories and stories to share for years.
2013 brought its share of surprises to our family. Most were “bad” so they weren’t my favorite kind. From our Down syndrome diagnosis to David’s arrival a month early, we were blindsided and knocked over by surprise. But, we’ve made it through and we’re stronger. I’ve said that a million times already but really, our “bad” surprises have turned out good. Our lives are unexpected and not at all what we expected and surprising. But that is exactly what we signed up for. We said for better or worse and truly, through the worse, it’s gotten better.
I’m so grateful for this season, our lives and the continual surprises that keep coming our way. Keep the good ones coming!
Baby number three – April 2015
Day twenty-five: I’m so grateful for generous people. Some strangers, some new friends, some long-time friends, some family. There always seems to be people willing to give, to go beyond or to help when they aren’t required to. My life has been pleasantly changed & affected by people who were kind just for kindness sake. I’m so grateful to anyone who lends a hand, an ear, a hug. Thank you for all those who have been kind & helped us. We are so grateful for you.
Day twenty-three: This morning, after church, Jason asked me what I wanted for Christmas/my birthday this year. My birthday is in between Christmas and New Year’s and I always feel badly for my loved ones who have to worry about Christmas gifts AND birthday gifts during an already stressful, gift buying season.
I don’t know if it was my month-long focus on Thankfulness or the sermon we had just heard about being thankful and appreciating what we do have, but truly, I was at a loss. There is not one thing I Need for Christmas or my birthday. Truthfully, most years, I don’t Need anything, but I can always manage to come up with a decent list of wants. This year, I’m at a loss. I am feeling truly blessed and don’t need one thing, or even have anything topping my want list. I am so incredibly grateful to have food in my belly, a warm place to sleep, clothes to wear and a means to get more of all of those things. I have a family that would never let anything bad happen to me and friends that make life fun. I am rarely bored, I am about to take a week long vacation and I have still have books I haven’t read and crafts I haven’t completed. If anything, I have too much! Honestly, I feel so overwhelming blessed in this season in my life that I could get warm socks for Christmas and be blissfully happy. Actually, I’ll put that on my list for Jason because warm socks would make me very happy #chronicicytoes
If I have any influence at all, I hope that everyone who reads will be grateful for even one thing today. We are SO blessed! I’m thankful for this season and for all I have been given.