Friday, August 27, 2010

how jenny does it...

this girl is going to knock your socks off...really. she's amazing. and she'll make you feel amazing too. that's just how jenny works. i met jenny in college and was so excited when she moved to a nearby city last year. jenny could take on the world and win...with a smile on her face. she's just that good.

here's how jenny does it...


A little over four years ago, with great anxiety, we sat in a delivery room waiting to meet our daughter. Samantha was not only our first child, but we also knew that something was wrong. After 17 weeks of trepidation – filled with blood tests, weekly non-stress tests, and just the agony of the unknown – I was induced for an early delivery. She was born surrounded by a team from the NICU, ready to whisk her away, but Samantha was breathing, crying…doing all the “normal” newborn stuff. She was small, a mere 5 lbs 3 oz, 16 inches long. But what the doctor and specialists had found in utero was still obvious under the fluorescent lights of the hospital room. Her head was too small.

Microcephaly: a condition of abnormal smallness of the head usually associated with mental retardation. That’s all we knew. She had a small (micro) head (cephalous). But why? No one could tell us. Three months later, we met with a geneticist who diagnosed Samantha with Primary Autosommal Recessive Microcephaly – a condition that she has due to both Marcus and I carrying the recessive gene – an extremely rare genetic condition. We were then advised us not to have anymore children. The risk was too great for another baby like Sammy. And because of the rareness of the diagnosis, they had no way to predict her outcome. Now, I want you to imagine this. Shut your eyes. No, don’t. Keep reading. But imagine your shutting your eyes…and imagine this…your dream of a big family, maybe 6 kids. You adore your husband. You are completely happy with life. You’re having a baby. Excitement! There’s a problem. Concern. Fear. Faith. Fear. Hope. Whirlwind of emotions sweep all your dreams and hopes away, and then swirl them back as you think “It’ll be fine. Miracles happen.” I really felt like everything would be fine, and in my mind, I suppose that meant that somehow she would be healthy – “normal.” Baby is born. Baby isn’t miraculously healed, but you’re feeling like it’ll still be ok. Geneticist enters scene – white lab coat, short, spiky blond hair with British accent. Smiles. “Primary Autosommal Recessive Microcephaly.” Case closed. You feel a tinge of guilt knowing it was your genes together that caused this, though no one could have predicted this. Then: NO MORE CHILDREN.

How do you feel? Sad? Angry? Crushed? Devastated? How about all of the above? Because that’s how I felt. Sad is kind of an understatement. Angry? I was pretty ticked. I was mad at our geneticist for even suggesting that my dream be over in an instant. And I was pretty turned off when she suggested a sperm donor. The idea just didn’t sit well with me. Crushed and devastated. On the way home, I let it all out. I cried uncontrollably (one of many times I’ve done so in regards to Samantha). This was a huge trial for me. I felt like not only was my child not “normal” but now I was told that I had hit my quota. We were done.

We quickly realized that Heavenly Father had a different plan for us and we obeyed. On the drive home from that appointment, Marcus said, “Jenny, we’ll adopt.” Duh! Of course. It felt so perfect, so right. And when the time was right, that’s what we did. Hurdle cleared.

I could go on and on about adoption because there are plenty of trials that come with that. But the one issue that is steadily taxing on my mind is microcephaly and motherhood. I have seen countless blessings in our lives because of Samantha’s microcephaly. Now, if Samantha had been born “normal,” Callie would have never joined our family. We would have had no need to even consider adoption. And now, we wait to have another child join our family through adoption. It has been an incredible blessing to see the Lord’s hand in bringing families together in such a way. Incredible blessing. (Interesting side note: We just found out that her head is sooo small she is considered nanocephalic and they believe she is actually a type of primordial dwarf – even more rare. There are only about 60 identified cases of what they think she has. Seckel Syndrome. The bonus of being a dwarf is that today she wore a super cute outfit of hers that I love from last year. Size 18-24 months. Yep. She’s 4.)

But, even with the blessings, some days it’s just really hard to do it. Forget about doing it gracefully, I’m just trying to get it done. To hear the crying. To guess what she wants. To feed her everything she eats. To administer medicine. To worry about seizures. To fight insurance about medication. To daily battle as I dress her. To keep her from chewing her fingers. To keep her from chewing her clothes. To keep her from chewing my in-laws’ table. To feel such heartbreaking anguish for her – that she has to experience pain and frustration on a more severe level than, possibly, the “average” 4 year old. To feel the pressure of being her mother and being the one who is supposed to bring out all of her potential into some beautiful, magical creation. Or even just to feel the pressure of making sure I don’t have the loud and inappropriate “special needs” child who is causing a raucous in church. And then to feel the guilt when I’m not doing as well as I feel I should.

Aside from a really good peanut butter and honey sandwich on buttermilk bread, there are a few things that helps bouy up my spirits and get life done from time to time…and feel really good about it during the process. I do feel like overall, I have been taught by both the Lord and Samantha, how to not only survive, but to live an abundant life – how to whistle as I work, even if I don’t always whistle so beautifully.

{Projects} This fits my personality well. I love working on projects and always have a few in the works. This is my personal getaway and inevitably, it revives me when I’m feeling unreviveable.


{Bedtime} Sometimes the countdown to bedtime is what keeps me going. Is that sad? Probably. But you know what? It’s real. Strangely, it seems that no matter how frustrating the day has been, when I’m lying in bed with Marcus discussing the day and telling him how terribly dreadful it was – or wonderful – I end up sighing, sometimes laughing, and saying “Ahh, she’s such a cutie.” Because at the end of a rough day, when she’s not around me fussing and driving me insane, I remember that she’s pretty dang cute.

{Faith} Faith in my family brings me great strength. We have such a strong extended family who all adore Samantha and Callie. That lifts my heart when it’s sagging a bit low. Faith in my loyal husband who is by my side everyday brings me peace. He’s the one who gives me the time to recuperate after a rough day. He’s the one I frequently can turn to and cry, and he gets it, or kindly pretends to. Faith that our family can be eternal and through the atoning sacrifice of Jesus Christ, will be perfected. Faith that Sammy will walk with ease, will talk one day, even if not in this lifetime. Faith in myself. Deep down, I really believe that I really can do this. Faith is among the top aids in my day to day life. I have a strong faith in our Heavenly Father’s plan. I know there’s purpose and reason for Samantha to be in our family as she is and for us to experience life with all its trials along her side. My faith in a Savior who died for us individually so that we can be healed spiritually and physically brings me great comfort. I can’t begin to explain how my faith has grown during the past 4.5 years. Through surgeries, seizures, and sleepless nights I have relied on the Lord more than ever and have felt near-tangible arms wrap around me and comfort me.

Samantha truly is a blessing in my life. She’s my right-hand lady. In many way, as short as she may be, I feel she stands much taller than I do. I follow the blog of a 24 year old Down Syndrome girl. She recently died from leukemia. Her mother shared that she didn’t know how she would go day to day without her daughter, because for 24 years they were a team. They spent everyday together. It’s a reality that I face that my little Sammers may die one day, and I’ll have to figure out how to possibly live without her. Right now, I truly cannot imagine that, nor do I want to. She is the sunshine in our life. I

How do I do it? Many days I can’t work on my projects. Some days bedtime still seems too far away. And my faith has definitely waivered. But the number one thing that keeps me going is the little girl with big blue eyes and rosy red lips. Samantha’s giggle warms my soul. Her smile makes my heart do little leaps. Her eyes tell me stories that I won’t hear in this lifetime. Her stumbling walk and awkward movements sometimes actually bring us great comic relief! She is clever and funny and really a joy to be around. Everyone loves this little girl! I want to be with her. I want to be by her side as much as I can. I want to be her Mom. I want to be her advocate. I want to tap into the potential within her and make her shine brighter than she does now. I want to teach her. I want to hug her. I want to kiss her little cheeks. I want to struggle as I put curlers in her hair. Tonight, I didn’t want to have to rock her to sleep, but as I did, I didn’t want to be anywhere else. I want her to know, even if she doesn’t understand the words “I love you,” I need to be certain that she gets it…that she feels it. I want to experience it all with her because she is my earthly angel and I’d rather laugh with her or struggle and fight than not have her by my side. Microcephaly and motherhood. Sometimes it really doesn’t seem so bad after all. Truly. That may not be how I do it, but it’s certainly why I do it.

9 comments:

Rach said...

I LOVE this! It was just what I needed to hear today!
And believe it or not, I have actually held little Sammy when she was maybe nine months old. I am Courtney and Sam's sister in law and we were at a showing of Sam's movie with you guys.
PS. I love the name Samantha and that has always been our number one choice of name :)

alecia said...

This made me want to be a better mother and advocate for my little girl. Thank you.

Amber Volle said...

This was great, thank you Maren and Jenny! You are both such wonderful mothers and inspirations! You two, your families, and especially your sweet little girls are always in my thoughts and prayers. Thank you for sharing.

Megan said...

Jenny, this was beautiful. thank you for writing such a beautiful post. you are an amazing mom. szeretlek.

John and Bethany said...

I just love reading anything you write Jenny. We are so grateful for your wonderful family and the short time we had to become friends. So fun to find Maren's blog too. Keep up the good work ladies!

rachel said...

Thank you for this Jenny. You are such a good example to me!

JAZKK Low said...

Jenny! I love you and you make me happy cry! I am so happy that you are Maren live close. 2 of my favorite people. YOu luckies! Why doesn't anyone move close to me in Canada?! :)

Erica said...

fantastic! if you live near maren, then you sort of live near me and I want a playdate! our 4yr old has rett syndrome...

Anonymous said...

Hello. I am a mum of my precious boy Christian who is 3 years of age diagnosed microcephaly. All I can say is my we man is the double of your daughter in every way...it would be great if you could get in contact.thankyou