Mama Tribe

I am 23 years old and I have 3 children. The last 4 years of my life have been the greatest experience I could ever hope for. There have been utterly awesome moments as well as some not-so-good times. I absolutely love and adore my children. There is no doubt that I would give everything for me. I love being a Stay At Home Mom so that I can be there to see it all. But this life is isolating. It doesn't have to be, but it is. 

A long time ago there were women that banded together to raise their children. They knew each other inside and out, backwards and forwards. They cared about one another and they loved each other's children as their own. They laughed together as they harvested food in the fields they cried together as they washed the laundry. They were doing life together. They belonged to each other. 

But now as I sit in my living room watching my children play I am yearning to belong. I was apart of several online mama communities. And with most of these groups I was disappointed. There are women in these groups just tearing each other down. They use their words to hurt someone and it's just so, so sad. I will never understand why things have gotten to this point. 

I wish things were different. I wish I didn't only have "online friends." I'm sure most other Mom's would agree. Let's all stop hating on each other and band together to nurture our growing families. 

I need a Mama Tribe. 

Why I Will Always Bathe My Son

"Are you sure I can't help you?"

"No, we're fine," I always say. 

It started out as something simple. My night nurse hurt her back so she couldn't lift Noah out of the tub. I stepped in and did what needed to be done, kind of begrudgingly at first if I'm being totally honest. But as time went on and I continued my daily routine of giving Noah his bath it turned into something that I can't stop doing. 

Sometimes bath time is the only good part of Noah's day. The only time that he smiles because he loves being in the water. I love that I get to spend that moment with him, even if it's just 5 minutes. 

I know I have nurses that can just as easily bathe him. It is in their job description and part of their duties. When I have a new nurse they always ask if I would rather have them do it. They always want to help. But they are helping me in a way that they don't even know. They are helping me love my little boy. They are giving me 5 minutes of "normal" with him while I wash his hair and watch him giggle as his big brother splashes next to him. 

It is an intimate moment with my son. A time where I can show him my love by washing him clean and taking care of him. 

I love bath time. And I will bathe my sweet baby boy for the rest of our days together <3

Renewed

I never thought he would die. 

Even with all the machines beeping and breathing for him and keeping him alive it never even once crossed my mind that it was completely possible that he might not ever have left that hospital room. 

On my special needs journey I have encountered many parents who have lost a child. Some after just a few hours together. And it hurts my heart. And it makes me grateful all at the same time. 

I am thankful for every second we have together because there are many families who are not as lucky as us. 

Lucky. Us. 

But I know it is not luck that has us in this situation. It is the Divine hand of God. And maybe that's why I never felt that he would die in the NICU. Maybe God never let me know that fear because it wasn't going to happen. 

And now I need to trust in Him that things are going to be okay. This has been a rough time and I know I have not written much about what we are going through but I'm not ready to share right now.

But I will share that my Faith has been renewed and I am putting all of my burdens on God. This is something I have not done since Noah got his diagnosis. That diagnosis may as well have been a death sentence ringing in my ears. 

I was mad. I was confused. And those emotions were directed at God. And it's okay to be mad at God sometimes. But it is not okay to stop praying. Which is what I did. 

But in this moment here is my prayer: 

Dear Heavenly Father, thank you. 

It is a simple as that for me right now.   

All We Can Do Is Try...

Reality is setting in. Noah is 2. He is not a baby. He is a toddler. There is a mile long list of things he should be doing at 2 years old. But he's not. And it sucks. It flat out sucks and I will say that without any shame or guilt. Before now, it was easy to turn a blind eye to the fact that he was disabled. Sure, I had to carry him everywhere, change his diapers, bathe him, etc. but that seemed like normal "baby" stuff. But now he's 2. Not so much a baby. He's almost 32lbs and about the same size as his brother. I am having a really hard time with the fact that this is how the rest of his life is going to be. Of course I knew his prognosis for someone with his disease. I know the clinical manifestations of PMD. But I so badly did not want that to be my child. I still don't. All of this is coming at a time when Noah is not doing so hot. He's been sick with fevers a few times over the past few months. He's been vomiting almost every day for the past 9 months. He's getting to a point where he mostly just wants to hang out in his bed a majority of the day. I do not want that to be my child. I want him to interact and play and smile and be happy. But I feel like he is having more bad days than good ones. And it's hard to cope with emotionally. I do not ever want to see him suffer or hurt or be unhappy. I have tried a million and one things to help with his vomiting and at this point it is out of my hands. We are being referred to Dell Children's to have another procedure to place a different type of feeding tube. This new tube will go all the way into his small intestine where he will be fed on a slow, continuous drip for about 22 hours per day. It will be a big change for us but I am so hopeful that this will stop the vomiting. The bad news is that this is yet another intervention. It upsets me to think about this as being another decline in his health. He is no longer tolerating his full feedings like he used to. This new feeding tube is not the end of the world. It's not even that big of a deal in itself. But symbolically, for me anyway, it just means another step backwards. And it's so hard for me to make this decision after I have fought so hard and tried so many things to not let it get to this point. But like I said this is now out of my hands. And maybe this will end up being the greatest thing for him. Who knows? All we can do is try.

Birthday Letter...

To my precious Noah,

As I sit here on the eve of your 2nd birthday I am overcome with emotions. Too many to even count. I think back to that day 2 years ago and I just remember being so excited to finally meet you. I couldn't wait to see if you looked exactly like your big brother. I wanted to kiss your beautiful face and hold your tiny fingers in my hand. I wanted to breathe in that heavenly newborn smell.

You were born into this world at 5:33pm and that's the moment my life changed forever. You were placed on my chest for a brief moment before you were taken from me. A whole 9 months of you and I being "us" ended just like that. You were silent and having trouble breathing. I was in bed taking in the moment and thinking that the hardest part was over. After a few minutes I turned to my Mom who was at my bedside and I asked if you were okay. She said you were fine and then I heard your first noise. A tiny little squeak. Then the nurse rolled the incubator over to me and you had an oxygen mask covering up your precious little face. She moved the mask away, only for a moment, so I could see you for the first time. You were so beautiful. She asked if you had a name and I said Noah.

And then you were gone.

I will never forget seeing you in the NICU for the first time. You looked so tiny to me although you were a good 3lbs bigger than all the other babies there. I could only stand to be in there for about 10 minutes before I had, had enough. This was not supposed to happen to me was all I kept thinking. I'm supposed to be holding and cuddling and nursing you, my hours old newborn. Not staring at you in an incubator while you had machines keeping you alive.

It was all such a blur at the time. But now I can remember everything in vivid detail and I can't decide whether that is a good or bad thing. I suppose one day I will be grateful to remember everything about you, including the day you were born. But sometimes it feels like I am trying so hard to forget.

These past 2 years have seen a lot of joy and a lot of pain. Many struggles but also great achievements. I don't know of anyone that I could possibly be more proud of besides you, my sweet angel. I know we are right on the edge of doing some big things with you. You are showing us more and more every day about how smart you are and how much you know and how much you can do. You are truly the most amazing person I know.

Thank you for letting me love you imperfectly. Thank you for showing me how to be the person I am supposed to be for you and for your siblings, too. But most of all, thank you for being you. My sweet miracle, Noah Jack. I hope you have the best day followed by the most awesome 2nd year. Happy birthday to you, baby boy.

Love,
Mommy

Dropping By...

Once again it has been awhile since my last post. Sometimes I just get so busy that my blog is really the last thing on my mind at the end of the day. But right now Savannah is sleeping, Oliver is in bed watching cartoons, and Noah is being taken care of by his nurse. I have a minute to myself to think and breathe and concentrate. It's nice, however fleeting this time may be. I have a few ideas for new blog entries in my head. Big ideas requiring more brain power than I think I can muster this evening. So I will save those for another day. Tonight will just be about me dropping by to say hello and reassure you that I haven't abandoned this blog project. Noah's 2nd birthday is quickly approaching so this weekend I will be going out to get some party supplies. The theme is sort of "Frozen" inspired with the tag line It's Cool To Be 2. Frozen is one of Noah's favorite movies at the moment and it's such a popular movie that Pinterest is just filled to the brim with cute little party ideas, although I am disappointed by the gender stereotyping going on. Frozen is for boys, too. Both of mine love the movie and I'm sure many other little guys love it just as much as all the little girls. Surprisingly though there were several Frozen character t-shirts online for boys which I added to Noah's Amazon birthday wish list. Anyway, I'm off track, if I was even on a track to begin with. Well it's getting to be about my bed time and I need to take advantage of having the bed to myself before Little Miss Thing wakes up and wants to hog the whole bed. It really is amazing how a tiny little 11.8lb baby can take up so much room....

What I Gained That Day

I feel weird writing this as if I lost a baby. I know I didn't lose anyone. He is still here with me physically. I have never buried a child or mourned over a tiny casket. But I did have a loss. And it is one that needs to be acknowledged. It is a loss that needs to be grieved so that the hole in my heart can heal.

I lost a son the day that Noah was born. I lost my ability to mother and nurture him the way I was meant to. I lost my power and control. But most importantly, I lost the child that I dreamed about in my womb from the moment I knew he existed. And instead I gained so much more than I ever could have imagined.

Two years ago at this time I was heavily pregnant with Noah and chasing a crazy 18 month old. If you would've showed me a picture of what my life is like now I probably would've freaked out and curled up in a ball in my bed and never came out again. I was not strong. I did not know I could be strong. In fact, I didn't know much of anything compared to what I know now.

In the last two years I have learned many things. Some things I have learned from books or from reading things on the Internet. Some things I have learned from other people. But a majority of things I have learned from my son. Not the son I dreamed about that would grow up and play with his brother and graduate from college and get married and have children of his own. Not him. I learned my most valuable lessons from my beautiful son that has never even said a word.

He has taught me to be an advocate for my children and I have found my voice for them when they cannot speak. I have learned how to be a better mother by growing my patience to wait and let them do things when they are ready. I have learned to appreciate the intricacies of pregnancy and the miracle of life because if one little, tiny thing is off it can change the whole outcome.

I have been broken for a long time from this loss I have felt. I haven't appropriately dealt with these feelings. And I haven't really spoken about them until recently. My other self, the self from two years ago, feels like a lifetime away.  I honestly feel like a whole different person and someone I never expected I would or could be. I have gained a whole new sense of who I am supposed to be, a new purpose, and a new life.

And it doesn't matter why this happened. And it doesn't matter why I feel this way. All that matters is that I feel it. And I'm dealing with it. In my own way. One way I'm dealing is to recognize exactly what I gained that day.