Lisa Bonnema

Mom. Writer. Speaker.

Dandelions & Tulips

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Saturdays are my favorite day of the week, especially in the spring and the summer, when the weather gets warm. Jeff is (usually) home and takes the girls outside to work with him so I can have a little “me” time, which usually involves toilet scrubbing and laundry. But nonetheless, I get a little break.

However, it isn’t long before I hear a tap at the door or several urgent doorbell ringings. As I open the door, I am greeted by two little girls with hands full of dandelions and faces full of smiles. “Here, Mommy, for you.”

I love that. And I don’t think it will ever get old. Ever.

A few weeks ago, we had a Saturday that followed that exact series of events. As I relished the moment, I filled a plastic cup with water, gently placed my gifts inside, set it on the kitchen counter, and happily went back to cleaning the bathroom.

A quick water break led me back to the kitchen, where I noticed that the plastic dandelion cup was actually sitting next to a glass vase full of purple tulips Emma and I bought a few days before in honor of Brooklyn. We both agreed she would like them, so we “splurged.”

As I saw the contrast of those two vases, my human nature took over and I started to go there…

Brooklyn will probably never be able to run around the yard on a Saturday morning with her sisters.
She will have to watch them from afar.
And she will never bring me bouquets of dandelions…at least not without a lot of physical effort.

When these types of moments come, I have learned to literally look Up. And just like every time I choose to that, God revealed something amazing to me. This time, He drew my eyes back to the tulips. The beautiful, beautiful tulips.

How in the world did I miss their beauty?

And then He fixed my eyes on both flowers:

The dandelions…bright like the sun, full of life, carefree, and a bit wild.

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The tulips…purple like Royalty, peaceful, carefully constructed, and a bit more fragile.

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Both created by God. Both beautiful in their own way. Both perfect in His image.

My mind was then drawn to a short essay someone sent my Mom days after we found out about Brooklyn:

WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Interestingly enough, going to Italy has always been a dream of mine, and Jeff and I were fortunate enough to literally go there a few years ago. It lived up to every expectation I had, and we absolutely loved it there.

But I know we will love “Holland” as well, and I’m pretty sure it will surpass all of our expectations.

After all, I hear they have lots and lots of tulips there.

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A Piece of Me

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I had my first dream last night. Well, my first dream that wasn’t really a dream at all, but more like a glimpse into the future.

I was in the hospital awaiting surgery. My Dad was there and so was my friend Katie. There was a mother and a daughter in the waiting room as well, both of who seemed to have symptoms of Spina Bifida. The daughter was joking with the mom that she didn’t have any real problems, but the mom was arguing that she did. They were smiling and laughing together. And next in line for the surgery.

I was trying to be brave, and I couldn’t see my Dad for a second. And then I caved in and hugged my friend Katie. I was crying. I told her I was scared. I had never been operated on before. She said, “I know,” and cried with me.

Then it was time to sign my name in at the surgery check-in. But instead of my name, I was supposed to write my relation to those in the waiting room. I wrote, “daughter, Mommy, friend.”

Only neither Emma nor Kendall was there.

And that’s when I realized I wasn’t the one really going into surgery. It was Brooklyn. But I couldn’t see her, which actually makes sense. She isn’t here yet.

I was woken up from my dream to the sound of Kendall crying, and I as walked to her room, I realized just how real my dream was.

Every time Brooklyn goes into surgery, it will feel like I am the one going in. A piece of me getting wheeled into that room. I can’t phantom that feeling yet, but I know I will have to feel it many, many times in the years ahead. I am scared.

But I do know I will have my family there and my friends. They will hug me and cry with me. They will be—and have been—there to support me every step of the way.

And my daughter will have to remind me every time that she is the one going into surgery.

But I will argue that is not the case at all.

More Hope!!

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Today was an awesome day! We met with the pediatric neurologist, and she is absolutely wonderful. She is extremely knowledgeable (well, duh… she is a brain surgeon), but she is also extremely compassionate.

I was so nervous about meeting her… about finding out all sorts of clinical details from some genius doctor who would talk over my head and give me all sorts of gloom and doom scenarios. I expected this to be our reality check. A day when we would receive knowledge that would take away the comfort of the “unknown” and leave us with just our faith. I prepared myself for the worst, knowing that no matter what we learned today, I would still choose to hope for the best.

But that wasn’t how it was at all. Immediately, I felt at ease when I met the doctor. She was very friendly (and quite fashionable I might add!) and was interested in what we wanted to know. She was very forthcoming with information, but waited for our questions and truly took her time with us.

She started off by saying that no matter what our ultrasounds are showing her, it does not give us an indication of what Brooklyn’s condition will be. She has seen a wide range of scenarios, and every child is different. Common sense, sure, but I expected a medical professional to be more black and white. But let me tell you that all that gray is a HUGE comfort to us.

She told us that she has seen children with defects in the upper part (thoracic) of their spine walk successfully, while others with very low (sacral) defects can’t walk at all. In other words, you really don’t know those types of details until the baby is born. Brooklyn’s defect is in the mid-lumbar/sacral area, so there is a lot of hope that she will be able to at least walk with braces. Her clubbed feet will have to be adjusted, but once they are, walking with assistance is a very real possibility.

Long term, she may or may not end up having to use a wheel chair. That will depend on her quadriceps strength, her weight, and her personality. It will also have to do with how much we motivate her and encourage her to be independent. The hospital really encourages independence, something I know Jeff is extremely committed to and ready to tackle. Heck, if he has his way, she will be running marathons! I am committed to this as well, but I know it will be hard as the Mommy. As the neurosurgeon told us, she will have to pick up her toys and make her bed, even if she has to do it differently than her sisters. We have to push her so that she can have a full life, even if it that means it’s a little hard on us in the process.

The neurosurgeon also told us that she wasn’t concerned with the fluid in her brain (hydrocephalus). It is only mild, and it is very common. Once the defect in Brooklyn’s back is closed, they will closely monitor the fluid levels in her brain. In fact, the goal is to NOT use a shunt (to help drain the fluid in her brain) unless absolutely necessary. I won’t bore you with all of the medical details, but while shunts have saved many, many lives in the last 30 years, they also create lots of complications (infections, mortality, etc.). So whereas 20 years ago they would have quickly put in a shunt, they now wait it out to see if the body can heal itself and learn to absorb the fluid. It’s a little more of a “cutting edge” approach, and Jeff and I are on board 100%. This may mean that Brooklyn will be in the hospital a little longer (an average of 3 weeks), but every day she gets older and stronger without a shunt is an advantage. The surgeon assured us that if they see any evidence that a shunt is needed, they will definitely use it. And they will only release Brooklyn from the hospital when they are sure she is stable and truly ready.

We also learned about possible feeding challenges (very common), learning challenges (math can be difficult), and the logistics of moving Brooklyn from delivery to surgery, as well as the series of events that will take place while she is at the hospital.

In the midst of all this information, we also talked about personal stuff…my pregnancy, our girls, her children. She referenced her other patients by name, and she told us she couldn’t wait to meet our little girl. I believe her. She made sure to introduce us to the very nice office people I talked to on the phone. They were just as friendly. As Jeff said, we felt like we were becoming a part of a family. And that was such an amazing feeling.

I can honestly say that Jeff and I could not feel more confident that this is the perfect surgeon to operate on our baby. No matter what the outcome, Brooklyn is going to receive the best care. I know these people will not only take care of our baby, but care for her.

Once again, our prayers were answered. Keep ’em coming! 🙂

And Away We Go…

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Appointments.

That is basically where we are at right now. Lots and lots of appointments. I was putting them off, I admit, because that meant time away from the girls and really, I wasn’t ready for that yet. I know that will be a big part of our life from here on out…but it is honestly a part I dread.

Funny how it’s the little things that can get to you. I’ve always been that way though. I can handle the “big things” pretty easily. Maybe because I know only God can handle them, but it’s the little things that I struggle with. It’s the day-to-day stuff that makes me feel like I am lacking and that I am somehow failing. And letting the girls down is now a looming fear that creeps in way too often.

Many of you know that Emma was with us the night that we found out about Brookyln’s Spina Bifida. Not the best situation, but in many ways, it helped relieve us of the decision as to what to tell her, when to tell her, etc. She knew from the start, whether we liked it or not.

Well, on the way home that night, I was trying my hardest to figure out the right thing to say to my little girl as I was still trying to comprehend it all myself. I told her that Brooklyn might have “sick legs.” I told her that even though she might not be able to do all the things we can do, she is going to be a perfect addition to our family. She will teach us about God in ways we never imagined. She will be special, and she will be a very important part of our family.

After my pep talk, I was feeling pretty good about my words and the fact that I was doing a good job of hiding my breaking heart, when from the backseat came the smallest little voice…

“Mom, does that mean Brooklyn will be more important than me and Kendall?”

Silence.

My worst fear…spoken by a 4 year old that had more wisdom and understanding than I ever imagined. My worst fear…before I even knew it myself.

As I desperately tried to backtrack — telling Emma we are all made special by God in different ways and all play an important part in our family — I felt a horrible sense of failure.

Even as I become more informed about all of the challenges we have ahead of us, it is still my biggest fear: Taking care of all three of my children in a way that makes them all feel loved, special, and important. Making Emma and Kendall feel loved even though Brooklyn will be getting lots of attention. Making Brooklyn feel loved even though she can’t do all the things Emma and Kendall will be able to do. Making them understand that they will each make me proud in different ways. And that I love them all equally.

I know this is a struggle every mother with more than one child has. But somehow it has now been magnified…by like 100. Maybe it shouldn’t be and maybe I’m the one magnifying it, but I would be lying if I didn’t say it literally makes my heart ache.

The comfort I have is believing that God will also use this experience to make Emma and Kendall the people He intended them to be… compassionate, caring, accepting. We want more for our children, and I think this does give my girls an opportunity to experience life in a more challenging, but more fulfilling way. I just pray God will help me guide them in this direction. That the stress won’t take over and that the moments we are together make up for the time lost. For the confusion.

So the decisions are being made. Assuming all goes as planned at all of our appointments next week, we will deliver at Northwestern, and Brooklyn will get her surgeries at Children’s Memorial. I will have to have a C-section, which means there will be a few days when I sit in a hospital room by myself while Jeff waits in another hospital for our baby to come out of surgery and my other babies are at home being cared for by someone other than their Mommy.

These are days I have to choose not to think about. Because the thought of those days tear. me. to. p i e c e s.

I know this will not be easy. But God never said it would be easy.

As my bible study lesson so perfectly revealed to me this week…

“For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake…” (Phillipians 1:29)

If my God can die on a cross for me so that I can spend a perfect eternity with my children, the least I can do is use our short period of worldly suffering for His Glory.

And I pray with all of my heart that all three of my girls learn to do the same.