Mac-a-doodle-doo!

Lilypie Fifth Birthday tickers

Keegan Joy

Lilypie Third Birthday tickers

Johnny

Lilypie Second Birthday tickers

Little and Big Warriors

Tiny Blessings is doing a new project for Memorial Day, extending to the Fourth of July. We want to honor our veterans and current service men and women while making hats for our sweet babies in the NICU. We have "designed" six hats to honor our military branches and two patriotic themed hats. 



We have khaki and red for the Marine Corp, navy and grey for the Air Force, camouflage for the Army, and white and navy for the Navy. We are open to suggestions for the Coast Gaurd as well!

We will be making a large number of these hats and need help from our supporters. We would like to attach a name to each of these hats of one of our veterans or current service members. Each hat will be given to the NICU with an attached tag detailing the person it was made and given in honor of. For example, the Marine hat above was made in honor of Matt's grandfather and will have a tag that says "John M. Mayes, United States Marine Corp, World War II- Pacific Front". As you can see, I still need to get his rank!

So friends, send us names, details, and stories of our American warriors. Their stories will be used to cover the heads of some of our littlest warriors! The stories will be chronicled on our Facebook page along with the hats made and we will make two drop offs, one just before Memorial Day and one just before July 4th. We are excited to be thanking our veterans and military families in our own little way!!!

Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. -Ephesians 6:13

Anyone interested in donating supplies to this project can contact us. If you are interested in donating to a great organization that directly helps veterans, we recommend the Wounded Warriors Project. https://support.woundedwarriorproject.org/default.aspx?tsid=926&campaignSource=WEBSITE&source=ONLINEM&ts_fromMobileRedirect=1

A Little Bit of Ds

Johnny has Down syndrome. Period. His chromosomal analysis proves that. With as much assurance as they can give, doctors have shown us that his 21st chromosome comes in triplicate in every cell of his body. He doesn't have a "mild case", he doesn't have a "little bit of Down syndrome", and there is no reason to suspect that "maybe the doctors got it wrong". He has Down syndrome. 


A friend from "the community" fielded an encounter of someone saying similar statements today. I have encountered it as well. It's one of the many questions that we parents of kids with Down syndrome have to answer somewhat regularly. I always try to answer in a gracious manner. 

There is no such thing as a "little bit of Down syndrome" or a "mild case". Someone could argue for mosaic Ds to be an example of this, but we can argue that on a different day. The fact is, either there is an extra chromosome or there isn't. How Down syndrome manifests itself is unique to each individual. I will tell you, from all of my research, kids and adults with Down syndrome are amazing people. There is so much of the body that can be effected, a lot is stacked up against them. So the impact of Down syndrome can be mild on an individual, someone could only show slight manifestations of Down syndrome, but they either have it or they don't. 

I think that one of the reasons these statements can be bothersome is that they often come from strangers or lesser known acquaintances. Random encounters with people will sometime lead to conversations about Down syndrome and there is sometimes shock to learn that Johnny (or other people's kids) has it. The statement is usually along the line of "What?!? Well he doesn't even look like he has it, it must be a slight case." It is always, always, always linked to appearance. 


(These photos were chosen because more physical markers are seen here)

Can you imagine the steam coming out of my ears?!? Because I can sometimes feel it. 

I don't want my son's abilities to be based on how he looks. I don't want others to judge his abilities based on how he looks either. I want them to see how hard he works and tell me it must be a slight case. Then I can explain that he has Down syndrome, but yes, he is one of the hardest workers we know. I want them to see him holding down a job one day and question how capable he can be inspite of all that is stacked up against him. I want them to see his face and comment on his smile and his big brown eyes without looking at all the ways to "see the Down syndrome". I want them to question a Down syndrome diagnosis because of how well he plays with his buddies, how kind and polite he is, and how easily he interacts with others and his environment. I don't want them to question his diagnosis because sometimes, from some angles, he looks "so normal"...whatever that means. 

And sometimes I am grateful for the physical indications that he has Ds. I hope that sometime in the future, when he is struggling, that people will be patient, kind, and helpful to him. But shouldn't we be that way to everyone who is sincerely trying at their task, but, for whatever reason, just isn't succeeding?

Regardless, he has Ds, 47 chromosomes in every single last cell of his body. Sometimes he looks like it, sometimes he doesn't. But his life and encounters with others will be a far better indication of who he is than any markers that can be checked off a list. 



I love that little boy, looks and all. 

Tiny Blessings Update 4/2013

We had previously scheduled our drop off for next week, just in time for Easter. Due to some conflicts, we have rescheduled for the week after which meant a quick run up to the hospital (and a snuggle with a friends newborn baby) to take the specifically Easter themed hats for them to pass out. I was able to take 33 between mine and Jennifer's and Karlin was planning on taking more so that will be more than adequate for the next two weeks until we take a large batch of items. Our contact person said that every single one of the St. Patrick's Day hats were used and it was one of the busiest they had seen in a long time. How wonderful for all of those little leprechauns!!!




With a heavy heart, she let us know that the hospital has seen an increase in fetal demise over the past two weeks. It is unfortunate that this has been the case. We pray for the little ones, their families, and the medical staff that worked with them. We cannot imagine the heart break involved in such circumstances. 

We will surely post about our big drop off in the coming weeks, we are excited that we have been officially handing items to them for almost a full year. I love how this ministry has grown and changed in 12 short months and how we work to remain flexible as God's needs for these babies and their families presents themselves to us. We originally thought we would be doing mainly hats, then mainly bereavement items, and now we do way more hats than we thought possible. Plus, we like to spoil our nurses when we can! 

Please let me know if you would like to help us in any way. With our big post in a few weeks we will have some specific needs that we are looking for as well as a Memorial Day project. 


One Day at a Time

I'm a planner. I always have been. I used to write out packing lists for family vacations before I exited elementary school. I sometimes schedule particularly busy days down to 15 minute increments. I refused to share "team copy" duties when I was teaching because the other person wouldn't "do it right" and may not have them a day or two in advance like I preferred. I like knowing where I'm going. 


As a parent you have to let some of that go. As mentioned in my previous post, I'm trying to find that balance. 

But I still see myself looking to the future, planning out family trips, theoretical finances, kid's futures, and job promotions and growth. It's been nice to let some of that go with Johnny. He brings us to the present. I should know that I don't have the plan right for all of us. Johnny showed us that the "plan" sometimes is completely wrong. I don't know what his future holds, but I can take comfort in the fact that all I have to worry about are short term goals and days and weeks for now. Sometimes, I really only need to focus on those 15 minute increments and decide what is best for Johnny (or Mac or Keegan or Matt or me) in that short time span. I think that having a kid with special needs multiples the normal mommy input that takes place sub consciously. All of those constant questions that Moms are asking of themselves all the time, gets a little more frantic and increases in number. With extra doctor appointments, therapies, and work to be done, let's be frank, sometimes special needs simply means more needs. A lot more needs. 

It sometimes feels a lot like my first year of teaching. What you would like to think of as treading water, but looking back was a lot more like drowning. I like to think that I keep my head above water, but sometimes it's just my mouth and nose that stays there. And there are other days that it's probably more like a straw being pressed firmly between my lips, giving me a chance to suck air in and stay alive. 

It most often feels like this on the days I try to plan all of his needs out. All of that weight gets thrown onto my shoulders at once and I begin the research of all the crazy therapies and methods I'm not doing, I begin trying to work in speech, developmental, and occupational therapy all in the same activity (although some of that can be done together), I push too hard in meeting physical milestones meaning naps hours longer than usual (and missing out on more work), and, in general, feeling the obligation more than the love, pride, and honor I want to feel towards my son. 

Now I tell myself, take a moment, focus on now, what is best suited for the next fifteen minutes. Today, it went well. 



This morning- a bottle and snuggles in bed. He held his own bottle and we bonded. I wouldn't change that for the world and so, in itself, that time was well spent. We are planning on working on a sippy cup, but we will get to that another time. 

He sat in his high chair and fed himself breakfast. That is 15 minutes well spent. I am so glad for his ability to feed himself. Some of my friends from the buddy group would argue that as a huge victory at this age. 

I changed his diaper and got him dressed. While doing so, we laughed and giggled, but also looked for his feet and hands as we pushed them through his clothes. I think he is beginning to learn the word feet. Those moments have worth. 

I worked at church today so he spent time in the church nursery with other babies. He chases balls, climbs in and out of different toys, and interacts with other kids his age. That's good. AND, they told me that he recently told/signed another kid "thank you" when the kid brought him his ball to play with. Hello?!? Johnny for the win!

After we went to lunch with a friend and while no deliberate therapy took place, I got some needed checking in on and Johnny fed himself fries, chicken strips, and crackers. He also signed more and all done. What else could I ask for?



This evening, post nap, he and I sat and watched the girls in their gymnastics class. He wore his glasses, practiced standing, and worked out his oblique and core muscles while we waited to their class to be over. I took advantage of the time with him, giving him breaks as needed. Would I have preferred more standing? Yes. But we did what we could. 

None of this may be mind blowing or life altering to some, but it is much needed perspective for me and other parents (kids with special needs or not) to have. Breaking down a day into manageable bites when we have platters worth of "stuff" to do in front of us makes all the difference. And while many people talk about enjoying the small things in life, my focus right now is taking advantage of the small things and the small moments and making sure that, whether it be snuggles or work or time away, each moment is filled with what makes us better. 

Steps

I've said it before, my life is busy. Sometimes busier than I want it to be. However, I find it fulfilling, pouring into others fills my cup too. I'm working hard to find that theoretical balance that the latent, hiding, obsessive compulsive side of me wants to take over and micromanage. I'm on the verge of letting her out, scheduling and controlling everything, letting her leave no room for spontaneity or freedom. 


While I fight that urge, I work on figuring out what works best for us. Trying to find the balance between all the side jobs, working with Johnny, spending quality time with the girls, promoting Tiny Blessings, and being with friends and family. Oh yeah, and Matt needs time with me too! I have a full post about the amazing partner he is and how we work so well to manage our lives together. 

Today I think I found a good balance. I just have to rinse, wash, repeat to see if works again. We had breakfast with a friend which ended with a bit of therapy work for Johnny, grocery shopping, lunch and relaxing, straightening up, working with Johnny more, and the kids enjoying the sunshine while I made a couple hats for those precious babies in the NICU. While this may seem a bit ordinary and mundane for most, this is the balance that I have to try and find. I tend to be a person of extremes and many of my days quickly get turned into one extreme or another. A breakfast with a friend will turn into adventures and friend hopping all day, killing any productivity. Or a cleaning hour will turn into detailed decluttering of a single closet while the kids are ignored as much as possible all day (don't worry, I throw down lunch and snacks). Or a relaxing show will turn into incessant movie watching until Matt comes home and we are all in our jammies still! And not that those aren't bad from time to time, I just can't fall into a pattern of extremes. 

So here is to a successful today and hoping for a successful tomorrow. 

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.