Trying

Sometime in our serious dating or early engagment period, Matt and I discussed kids. It was more than likely in our dating time frame because I wanted a large family by today’s standards and anyone who wasn’t on board probably wasn’t going to make it far with me. While I wanted 6 and Matt wanted 2, we settled on the common denominator of 4. It seemed (and seems) like the perfect number to us. You have more siblings that just one, nobody is a sole middle child, and it isn’t the mad chaos that 5 or more seems to Matt. It has felt like the right number for a long time.

When dealing with Johnny’s diagnosis, we weren’t sure if that number would change. We were scared, rightly so, and had to process a lot about our lives, including our abilities to have another child while raising one with special needs. Additionally, we worry about a chromosomal abnormality on a subsequent child, but that is another post for another day. As we worked through our concerns and grew together as a couple and a family, we confirmed our desire for a fourth at some point. In fact, it became more solidified each day.

We like our spacing and wanted to keep it fairly similar. Last May, just after our Florida trip, we began “trying”. If Yoda from Star Wars is to be believed, we did not, we failed. At first it was expected. I was still pumping for Johnny and it is unlikely that a couple will get pregnant on their first try (even if Mac was). The second month came around to no avail and still we didn’t worry. Matt was busy with school, work, and traveling, and stress has an impact on fertility, or so we have been told. A third and fourth cycle passed with no success and still, while disappointed, we didn’t worry too much about it. I knew my time pumping was ending, Matt’s schedule was leveling off, and surely it wouldn’t be much longer until we had our fourth on the way. Now cycles 5 through 11 have came and went without an even inkling or hope of a positive pregnancy test. 

It’s becoming difficult. It’s becoming frustrating. And it’s becoming really, really sad. The cycle before last was the first time that I cried at our lack of success. My heart yearns for our fourth and, right now, I cannot understand why God would press that desire on me without a promise of it being fulfilled. Maybe that’s not fair, but it’s where I am at right now. I drive myself crazy looking for signs and symptoms that aren’t there or that are apparently just PMS. I pray each time I go to the restroom, not wanting my hopes and dreams for that cycle to be dashed. I struggle to find the words to tell Matt that the last month wasn’t our month to become pregnant and then try to be brave as I see the disappointment in his face, mirroring my own. Or, like our most recent realization that we were still "without child", finding it hard to accept his hugs and "I'm sorrys", wanting only time to myself. I find myself in the shoes of so many women before me, who fought and fight for years to conceive their own child, rejoicing with friends who announce pregnancies and welcome babies, while all the time wondering when their wombs too might be filled. I doubt myself, saying that I shouldn’t fret, that after all, we have three amazing blessings and we should be grateful for what we have. And we are so undeservedly blessed, but still…  

I hide my jealousy, most recently at Target, as it seems that everyone is pregnant around me, and each perfect, life filled belly was mocking me and mine that still clings to residual post Johnny fluff. I wonder what we are doing wrong, if it’s him or if it’s me or if it’s just not the right time or if it will, frighteningly, never be the right time.  Each month, I look forward, recalculate an estimated due date, count the weeks backwards, and try to find some silver lining about why that month would be better anyways. Each month, I look back, trying to figure out why we would have been successful several times over with each of the other kids (pregnant on the first, second, and third tries respectively) and why this time is so, inexplicably, different. Each month I feel betrayed by my body, angry at it for not having the baby inside that I so desire, and while I know what a miracle it is to conceive at all, I wonder why we fail. I fight back tears at the twice now that people have mistaken my still soft and pudgy tummy, leftovers from Johnny’s weight gain, saying how glad they are that I am pregnant…I was gracious even though I didn’t want to be. I smile and patiently say “We will see” as people who know we have wanted a fourth and can see that our gap is growing larger ask us about news. I pay lip service to all the canned responses “Don’t stress, then it will happen.”, “Just stop trying, then it will happen.”, “Go for every day, then it will happen.”, “Try every other day, then it will happen.”, “Go start a new job, then it will happen.”…and the list continues.

We rest assured in God's sovereignty over us and our lives. We know and trust His plan. He taught us that lesson with Johnny's pregnancy and we are comforted that His story for us is better than we ever could write for ourselves. Part of me understands. If we had been successful from the start, we would have a baby right now. And while that would be very much welcome and we would be overjoyed, it would mean time taken away from Johnny at a crucial point in his development. So in a way I am glad that we have had to wait. We also don't know if we are meant to go ahead and push towards my nursing program, to help and assist others in bringing little ones into the world. I think therein lies our biggest frustration, is that we don't know. If anyone has an email contact for God, we would appreciate it, we would like a little glimpse into our future. Writing in the clouds, text messages, and morse code will also be accepted as forms of communication!

I don’t know what is in store for us in the expansion of our family. I do know, that with time, I could be 110% happy and content with our family of 5. But for now, my heart hurts for the one that I desire. For now, I sigh with sadness for the time we have waited and worry over the months to come. 

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. –Jeremiah 29:11-13

For Johnny 3-21-14

Today we celebrate and honor those individuals who possess an extra copy of their 21st chromosome. While I have met many individuals that have Down syndrome over the years and many more so this past year, only one holds my heart like my son. 

At this time two years ago we were just beginning to tell family and friends that we were having another sweet baby. We knew our lives would change in having him, but we didn't know how. When his potential diagnosis came along, we nearly fell apart. All we could see were walls, barriers, and road blocks. How were we to travel this road with the little one we loved so much?

We had much to learn. We became more vulnerable in seeking help and leaning on others, but still grew in strength and reliance on our own knowledge and instincts in raising our children. We recognized our own ignorance about an entire world we knew nothing of, but used that to fuel our thirst for learning about our son's condition, methods to help him, and people that forged ahead of us. We mourned for the hopes and dreams, expectations in reality, we had for this child, but became aware of the fact that Johnny has his own path and will have his own hopes and dreams to strive for. Our eyes became open to many more of the important aspects of life, we relished in the smallest of victories, and yielded much to God, grateful for His presence in our lives. 

We didn't know much, but we did know we were trusted with this sweet baby. We were given him to love, to help him grow, to teach, and to lead towards a good life. 

In our work, we realize how much he has taught us about love, how he has helped us grow, how much he has taught others, and how he leads us towards a better life. 

Johnny loves unconditionally and with his very being. He can't help but love, even when wronged. When he gets hurt by his sisters, it's only a few seconds before he is laughing and grabbing their faces. When crying after blood draws and shots, it's just moments before he smiles and grins at the nurses. When mad at mommy and daddy for taking away items, it's an easy diversion of favorite songs followed by giggles and declarations of more. He knows nothing of grudges, but only of forgiveness and this is a lesson even I struggle with. 

Each time I have grown a child and held them in my arms, my heart has grown. Most mothers would agree. With Johnny, I felt like the grinch, with my heart growing three sizes that day. With Johnny, the world tells me he isn't perfect, and my heart says, I love him in spite of all that. I have grown more accepting of differences and abilities. I have grown as a mother, recognizing uniqueness and needs in each of my children. I have grown as a friend, recognizing uniqueness and needs in each of my friends. 

Johnny teaches just by being him. He teaches how similar kids with Ds are to other kids. He teaches that there is a spectrum. He teaches that, in spite of having special needs, he likes books about puppy's, chasing after balls and Tupperware, and that there isn't much better in life than carbs to eat. He teaches that low muscle tone doesn't mean that he isn't strong enough to make his OT work as hard as he does in their sessions. He teaches that just because he signed something all weekend doesn't mean he will replicate for his Speech therapist. He teaches that at the end of the day, snuggles, hugs, favorite songs and stories, and kisses are all most kids need. 

I can't even say what a better life we have with Johnny in it. Our life is measured differently now. Instead of goals and deadlines, we measure in making each other laugh, smile, and how hard we worked that day. We do still have goals, lots and lots of goals, but they are a part of the big picture instead of our main focus. We make sure that our work and push towards milestones doesn't make us lose sight of spending time together and making sure we are happy and well adjusted. He has given us balance. 

In church this weekend, I attended a parenting session. In it, we were reminded what miracles our children are and that God wants us to give "these precious lives meaning." I feel like we have a special gift in being parents to a child with special needs. If we look to heaven, Johnny has so much figured out about grace, love, determination, kindness, and how we are told that heaven will be. Sometimes, I don't feel that we are here to give his precious life meaning, but that he is here to give our precious lives meaning. 

(Little dude, Big plans)

That extra chromosome means that our life sometimes looks different. But I wouldn't trade that life for the world. 

Tomorrow and Today

Tomorrow is World Down syndrome awareness day. March 21 was chosen because the date, 3-21, represents the three copies of the 21st chromosome that individuals with Ds have. 

That's tomorrow though. Today, I would like to focus on something else. Today, I would personally like to dedicate to the moms and dads, the caretakers of individuals with Ds and others with special needs. 

Having a kid with special needs is hard and anyone that tells you any differently is lying. Raising kids in general is tough, so any time you add in all of the factors that kids with special needs have, you just expound all that toughness. All of those normal worries that parents have? Multiply that. All of those questions that parents have? Multiply that. All of those tearful nights wondering if your kid is getting enough? Multiply that. All of that pressure, both external and internal? Multiply that. 

We all want to do what is best by our kids. But when you have a kid with special needs, you feel like so much is stacked against you. 

That is why I dedicate today to the parents of kids and adults with special needs. I promise you, no matter how "with it" they are, they still need encouragement. 

Until people see me writing in our planner or hear me on the phone making appointments, they don't realize how involved our kids schedules are, and we have more to add. Until friends have seen some of the stuff we work on and had me list it out, they haven't realized how deliberate we have to be with our kids. Until friends have seen Johnny, side by side with another kid his close age, they don't realize how daunting that growing gap is becoming. Until friends hear the comments and questions from strangers, they don't understand how tiring it can be. 

It's not that parents of kids with special needs want pity or tears. In fact, most of the time, we feel pretty amazingly and indescribably blessed (more on that tomorrow). But we usually have a lot on our plates and having people that are compassionate, kind, and encouraging, helps that plate look a little more manageable. 

I'm not asking for much today. And I have a ton of support in my life, so this is focused outward. In the next day, week, forever, however long, be an encourager to someone who is or who has raised a kid with special needs. Smile at them in the grocery store and tell them 1) how beautiful their kids are and 2) how great of a job they are doing. Ask your friend if they need help watching the kids for a doctor appointment or therapy session. Ask your friend specifics about what they are working on, how the progress has been seen, and what they would like to accomplish next. If you spend a lot of time with their kid(s), ask if you can work on something while you visit, sometimes it is as simple as reading a book or working on a new sign. When you know that someone has had a rough week, offer to visit with them or take them out, when you get together, ask if they want to talk about the rough week or if they'd rather forget about it and talk about something else. If you know someone with a prenatal diagnosis, smile, hug them, tell them you love them, say you will be praying for them, ask them if they need anything, and bring them dinner. If you meet an adult with special needs, be patient, smile, and be kind. If you meet an adult that is working with special needs, be extra patient, smile, and be kind. 

Johnny has made us into new parents in the time he has been in our lives. We see the world differently now because of him. We fight for him (and sometimes with him) every day. This road can be rocky and I am so grateful for the parents who came before me that forged a little bit of the road. I am also grateful for the parents walking the road alongside me, even though they may not always take the same steps we do. Our focus is for the kids to walk their own road one day, but until then, we walk hand in hand with them. Today is for all the parents walking hand in hand with their kids. 

30 Day Shred Complete

In my midst of busy-ness, I didn't blog a lot that I wanted to. One huge accomplishment was finishing the 30 Day Shred. 

It was daunting to finish at first for a number of reasons. All of Houston seems to be hit by this never ending, mutating, persistent cold. It knocked me off my shredding feet for two weeks. I could function for day to day stuff, but anything more than crawling around after the kids or a single flight of stairs would send me into a coughing fit that wouldn't shake. So I was worried that, after two weeks off , I had lost some of my strength. This wasn't the case. 

I'm ecstatic that I finished all 30 days and really ended up looking forward to my workout time. I think the shred is great for me for a number of reasons. First, it's quick. It only takes 25 minutes (that includes warmup and cool down) and covers strength, cardio, and core workouts. Second, it's a DVD/video which means there isn't the commitment to getting to the gym or the effort of making sure we are there at an ideal time for the kids to be happy in childcare. Ideally, and we did do this a few times, I would shred and try to make it to the gym a few times a week for extra cardio. But having already done your workout for the day with the shred takes the pressure off. Third, it's adaptable. By the end of the program, I was still doing modified versions of some of the exercises, but others I was amping up on my own (extra weights or extra reps). In the comfort of your own home you can find what works for you. There was one cardio exercise that I didn't like, so I picked another one to do for those 30 seconds. It just worked better for me. 

Did it work? That's hard to say. I think I would have seen more results without having to take those two weeks off for sickness. However, as far as getting stronger, you can tell that within three days, and every few days if you look back at where you were, the change is noticeable. Also, I definitely lost inches all over. With the exception of my biceps and quads which maintained the same measurement but got more toned and leaner, I lost one to two inches all over my body. And that is victory to me. 

I think I may plug back through the workout in the coming weeks while trying to work in more walks with the kids or workouts at the gym to continue advancing towards a healthier and stronger me. I bought myself a workout outift as a reward for doing so well which means I have to get good use out of it! I hope anyone that has been working towards their owns goals is doing well too!

Parenting Favorites

I recently wrote on Facebook about one of my favorite parts of parenting. So much of parenting is expected to be either miserable or magical. On one end of the spectrum, you have people who suffer through it, making themselves a martyr to their kids and the responsibility they feel in raising them or, being so self involved with their life, ignoring their kids as a burden and obligation. On the other end of the spectrum, you have people who either think that every moment of their child's life is perfectly engineered by rainbow unicorns or feel the pressure from outside sources that it should be. 

Fortunately, Matt and I have settled somewhere in between, finding some of our favorite moments and parts of being a parent in all sorts of mundane and normal things. 

A brief list-

Hearing Matt holler, "Come here! You have to see this." Only to find him chuckling to himself as quietly as possible as he laughs at the way the kids finall fell asleep. The night that spurred this post, Keegan had fallen asleep at a 90 degree angle to her sister, folded in half with her legs on top of the pillow, head firmly planted against MacKenzie's bum. We frequently get our after hour laughs in this way. 

Matt does bedtime with the girls and I love that for starters. It means intense and focused bonding for them and it helps them spend extra time with a daddy that works very hard for them. I also love that, on most nights, I have to shout up to him that it's late and he needs to wrap it up. He spends such quality time with them, listening to them, singing with them, and telling them stories, that the time gets away. 

Whispering "secrets" with the girls and hearing them whisper them back. I started this with Mac recently, telling her she was beautiful or smart or how much I loved her. It surprised me when she immediately began doing the same thing back to me and giving me special secrets too. Keegan has since picked up on the fun. 

First, making them delicious and semi nutritious meals that they enjoy. And second, hearing them say thank you for making the meal, even when it isn't necessarily their favorite meal. As parents, we work so hard to practice and repeat manners and kind words, it feels good when all of that repetition pays off and they start saying things on their own accord. 

Having two little girls who love dress up so much that glitter is literally everywhere in the house. Matt's mom was contemplating buying the girls shoes that have glitter on them but didn't know how we felt about that. I told her that we wouldn't notice the glitter on top of glitter so she was welcome to! 

A little boy and his obsession with dirt. I can't keep him away from it. If he sees an open door, he furiously makes his way towards it, grunting all the while, and trying to scootch out into the wild. He will scrub in the dirt as much as possible shoving it in his mouth with fervor. The girls hated even being in the grass until they could stand so this obsession is very new to me!

There are thousands more reasons that make parenting so rewarding, but these have touched my heart recently. I am so priviledged to be mom to these three. 

All She Can

I think most parents joke and tease with their kids about how much they are loved. Just this morning, Keegan told me she loved me and, like so many times before, I asked her how much. She threw her arms out as wide as she could and said, "This much!" I jokingly asked her little three year old self, "Is that all? That's not very much!" She took it in her usual good natured stride, scrunched up her nose, grinned and said, "Yep!" As the conversation moved on though, I thought more about what I said. 

By units of measure, her arms don't stretch that far. She is tall for her age (87th percentile as of Wednesday), but that's still not very tall by human standards making her arm span not very big. Even an adult, with their arms spread wide, can't show how much a parent would hope to be loved by their child. 

But I then reflected to myself on how that was as far as she could reach and that's how much she loved me. As wide as her arms would move apart, as far as she could stretch them, that's how much she loved me. She loved me, in a unit of measure, as much as she possibly could. When you think about it that way, it means so much more. She was telling me she loved me and physically showing me, that for her, it was as much as she could. And that's incredible. 

Thank you Keegan for loving me as much as you possibly can. I love you that much too!

(Photo restaged)

Keegan at 3

Keegan,

Today you are 3! Three years ago I was either sitting comfortable in a hospital bed waiting to see what the coming hours would bring or walking the halls, much faster than many laboring moms, seeing if we could get some good contractions going. I was so excited to meet you and now, having known you for the past three years, I was right to be excited. You are fascinating and amazing and you fill our lives and hearts with joy every day. 

Your happiness is contagious. Your crinkled up smile with big brown eyes that disappear into your scrunched up face make us laugh. Your giggles range from courtesy laughs to make others happy to genuine belly laughs that are infectious and make us all smile. You love to laugh at jokes and animals the most, but will also get huge kicks out of silly faces from those that you love. You study books intently, memorizing your favorite parts and answering questions throughout. Disney princess books are your favorite, but you will happily read anything. You love to listen to music and will dance and sing on car rides, at home (with or without accompaniment), and in the store. Just like your sister, your skill for picking up tunes and music is amazing and within a few times of hearing a song you will begin to sing along. You love to play with barbies and dolls, carefully caring for the chosen doll or animal of the day as you rotate through which one has your favor that day. You also love to color and draw and will happily sit at our dining room table and color pictures for friends and family. 

You have been fun at meals as you participate more in choosing your favorite foods and talk and interact with us more as the meal goes on. You love pasta and Mac and cheese, but also love rice, peanut butter and jelly sandwiches, raisins, yogurt, all fruit, but especially oranges, oatmeal, and candy! The candy has been fun to watch you with because it's all the rolled over candy from Halloween to Christmas and now valentines day. You only get one piece a day if you eat a good dinner  and it's fun to see which one you pick on a daily basis. Pink is usually the winning decider. 

Speaking of pink, we need to expand your wardrobe to include more of it. You insist on wearing pink most days and will throw a fit if we try to have you wear anything other than a nightgown at night. You love to wear your pink cowgirl boots, but also love the pink hello kitty converse, and pink princess tennis shoes. You see the pattern here right? For several school days you picked out a pink Mexican dress to wear with jeggings and your boots. It was an interesting combo, but you certainly pulled it off! Your hair is also long enough to do more stuff with so we have been putting in a "queen Elsa"  braid most days. You are great about getting your glasses and putting them on, you wear them 95% of waking time if not more. 

You love to play with Lylah and Luke, your very best friends, but you will happily tromp along with anyone. You and Mac play together a lot and do a great job loving on Johnny too. Still, just like we said for the past three years, you are either going 100 mph or you are crashed out. You will either be going and moving and wiggling or snuggled up and about to fall asleep. You love snuggles and will wedge yourself as close to a loved one as you can. 

Keegan you are amazing. You love so fiercely and deeply and have such passion for people and for the things that are important to you. Sometimes it means that you get mad and frustrated, but mostly it is fuel for making others happy and content. I love that you are such a personality and so full of life. It's been so fun to watch you grow and to see you change and, in some ways, stay the same. Your birthday card said it perfectly- "You're an amazing girl! Everyone loves your bright spirit and smile, how you do your own thing with spectacular style! You've got a great shot at your dreams coming true- just keep being joyful, original you!"

Happy Birthday Keegan Joy! Mommy and Daddy love you soooooo much!

Love,

Mommy and Daddy