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.
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.
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!!!
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.
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.
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