Acceptance.

“Accept the children the way we accept trees—with gratitude, because they are a blessing—but do not have expectations or desires. You don’t expect trees to change, you love them as they are.”
― Isabel Allende


Acceptance is a place that is difficult for many to reach. The easiest decision I ever had to make was the decision to love Jeremy no matter what. 

I read a blog the other day that made me angry. It angered me for numerous reasons, but mostly it angered me because there is a baby girl out there who has no family to love her, and the one family that was going to love her simply backed out. In short the baby girl was born with a lot of problems, her biological parents had chosen (previously) to give her to an adoptive family that could care for her (I assume this is before any problems were known). When she was born and these problems surfaced the adoptive family was given the choice to back out. They chose to back out. While I can understand some of the reason they chose to back out I also have a lot of difficulty understanding their decision. I guess my biggest issue with it is the unanswered question of what happens to the baby girl? Who is there for her?

I read an article this morning about a family that was awarded $50 Million for a "Wrongful Birth" lawsuit. In short (again) the genetic testing was done and the lab did not test for the correct genetic defects, their baby was born and has numerous growth and developmental issues. Had they known they would have aborted. So I ask this - while your child may have an IQ lower than 70, how would you feel knowing your parents would have chosen to get rid of you on the chance you may have had a genetic abnormality.

I am not necessarily pro-choice or pro-life... but there is not a bone in my body that would have chosen to abort Jeremy. Nor is there a bone in my body that would EVER think a lawsuit is appropriate in a case like this (and ours surely would make a lawyer's day!) There are also no bones in my body that would think it was okay to walk away from a child - either mine or adopted into our family - who needed us there.

Sometimes people really piss me off, and you know what I want to say to them? It is so easy to give up, walk away, and not face reality... and while you are doing that I am going to enjoy this little face and his smiles, and the way he grabs my cheeks and pulls me closer. I am choosing to watch him learn from everyone what the definition of love is. I will watch videos and read stories like this that totally make my day and give me undeniable hope for Jeremy's future! 

Family.

I have an amazing life, amazing friends, and above all an amazing family. I don't attest any of this to pure luck, it took a lot of work to build this life, and build these relationships, and it is constantly under construction as new paths are thrown our ways.

Since January 2013 it seems as though my emotions have been pulled in every direction imaginable, and only recently have I been able to actually sit and reflect on everything this year has brought. I can name very few, very defining moments in my life; the first time I enlisted, the birth of my daughter and then the birth of my first son, marrying my husband after the priest refused to do so, and the birth of Jeremy. None of these necessarily define me as a person, but they have all accumulated and reached what I can only describe as lava-like flows down a mountain to make me the person I am. The first time I enlisted defined that I was about to leave, really leave, my parents house. The birth of my daughter defined motherhood, I was going to be responsible to someone other than myself... man I was terrible at that! The birth of my first son defined that while bows and ribbons and barbies were fun, trucks and dirt could be just as awesome! Marrying my husband defined that while we are extensions of each other we are not one and the same. The birth of Jeremy defined strength that I always knew I had, but never had to apply in such a way all the time.

The hardest phone call I ever made was the one to my Mom. It was the first time I had to say to someone that Jeremy (at that point in time) may have Down syndrome. I had to explain the heart condition in detail, and his foot as well. But most importantly I had to confront the fact that my life was forever changed because I was now the parent of a child with "special needs." This, by the way, is a term I dislike... all children have special needs, some just have more dependent needs than others. We both cried, but I found out later she cried cause she thought he was going to die. I cried because I felt like my ability to make perfect babies was robbed of me. Little did I know I still made perfect babies, Jeremy was just perfect differently!

My Dad was (as always) very matter of fact. He can always rope in whatever situation has me crazy, and in his "just give me the facts" tone, make it okay. But in that one phone call they let me know that it didn't matter that Jeremy had Down syndrome, that he would require surgeries, therapies etc. for the long run because he was family and he would be loved no matter what. My sister gave me props on Mother's Day for being as strong as I am... those words will always remain with me whenever life gets hard... cause it will get hard again.

Family doesn't always come by way of blood either. My husband and I have quite a few people we consider family that were not raised in the same bloodlines as either of us. His best friend, and Jeremy's namesake Jer, Jer's wife Andrea, my friends: Angie, Tara, and Claudia are just a few - but they are the important ones. When the words "We need you..." and its followed with "to help," "to do a favor" are uttered, these are the people who go to great lengths to help. These are the people who cry with you, laugh with you, and are there through everything that you almost think you'd be lost without them. Jer and Andrea specifically are the kind of family who drive 11+ hours for Jeremy's heart surgery.

Then there is the family who drops what they are doing to just be there during a tough time. Joe's cousin Barb and her family falls into this category. During Jeremy's recovery from heart surgery they drove the few hours it took them just to meet him. While the visit was not long enough, or under the greatest of circumstances... it was nice just to know that we were all cared about so much.

My husband's parents have also shown an unyielding amount of support, just calling to say it will all be okay, that Jeremy was so lucky to be born to parents like us, and driving almost 5 hours to see him in the hospital after his surgery. My husband's Aunt Claran almost daily gets on Facebook to look at Jeremy's pictures, always has kind words to say, and then takes the time to forward the pictures to family that is not on Facebook.

These are the people that all really matter. These are the kind of people I want Jeremy to be surrounded with.

At the end of the day I know this: Jeremy is so loved and he is lucky. I hope his life is always known as one full of love and laughter, that he knows he can do anything he sets his heart and mind to, and that all of us will always be there to support him as he grows, learns, and attains his goals.

Formula. Ugh: Wrong Information is Worse.

I want to make something clear from the get go: formula is not my first choice for infant feeding.


This has come after almost totally formula feeding my first born and exclusively breast feeding my second for 22 months. So I think I am somewhat a subject-matter-expert on my preference for solely breast feeding.

Jeremy was not gaining weight. No matter how hard I tried to breast feed him, or how much I breast milk I tried to force down his throat through a bottle, he just would not gain weight. With Joey the slow weight gain was easy to digest (so to speak), doctors were not concerned that he had issues as most breast fed babies tend to be at or under the ideal weight. Jeremy on the other hand was not only not gaining weight, his head wasn't growing (5th percentile to be exact), and he wasn't getting any longer.

 The biggest issue with having a congenital heart defect (besides a heart defect, and this is my opinion) is growth. Jeremy's heart worked so hard to do anything that eating was similar to me going out and running a marathon. It would take (on average) one full hour for him to eat 3-4 ounces. I spent the majority of my day feeding him. Then there were the days where he would only want to eat about 12 ounces total. For a period of 6 weeks, Jeremy did not gain any weight. Not one single ounce. Not even a gram. 

To have the heart surgery at 6 months Jeremy needed to weigh at least 5 kilos, or about 14 pounds. It was a long, long road.

At around 5 months the cardiologist, nutritionist, and pediatrician decided he needed to supplement his breast milk with formula. This was the single hardest decision I had to make regarding his health care. Every bone in my body hated that it had come to this, but I knew that if he did not make weight for surgery I would hate myself even more. So we supplemented his breast milk by adding calories.

Why am I writing this? This is why.

I had never been told such off-the-wall, point-blank wrong information about breast feeding until I met this "Doctor" in the NICU graduation clinic (which we no longer participate in because of this incident). She "informed" me that breast feeding was terrible for babies because:
 - it did not provide them all of the nutrition they need at any point
-at 6 months of age babies get absolutely nothing from breast feeding and all babies need to supplement with formula at this time
-that Jeremy was really far behind at 3 months because he could not sit on his own and therefore he would not be able to eat table foods on time

And this was just some of it. I was shocked. I had never heard such wrong information from a Doctor no less... and a FEMALE doctor who had even breast fed her OWN children! Needless to say I left and when asked to schedule the future appointment I declined and explained why.

For the record:
-babies get so much nutritionally, developmentally, etc. from breast milk and breast feeding that I can't even begin to start... but you can go here for more information.
-babies still benefit from breast feeding at 6 months of age (and beyond)
-I don't know too many babies that can sit unassisted at 3 months of age

Today:
-Jeremy is still receiving breast milk with no formula
-Jeremy is 7 months of age TODAY!
-I try to nurse Jeremy because it will help develop his speech, which he may have issues with because that is common with Down syndrome
-Jeremy is learning to sit unassisted, and at this age within the normal guidelines for a child with Down syndrome this is considered normal-to-early
-Jeremy is eating baby food from a spoon(!) and sitting in a high chair at an age I consider to be ok to start baby foods
-Jeremy is also making "b," "d," "g," and "m" sounds and some of those are the most difficult for ANY baby to learn to make because it utilizes the lips