A Teensy Bit Sad

I get asked sometimes if I am depressed. Surely you must be depressed some say. Others tell me how much they admire my strength.

I'm not denying I am strong when it comes to my life situation. But it is not easy being strong - as a Mom is it something I just have to be. I can't be falling apart when I have two little boys that rely on me.

Ty - 6 weeks old

Aidan - 15 months old
I am not depressed. Sure, I may feel sad sometimes. But I do not want to associate sadness with my boys. I don't want to feel sad when I think about them. They are my pride and joy!

My mind does race though - all day long. It is always in overload. Still trying to come to grips with how my life is now. No one ever expects to have a baby with a serious medical condition, especially one that suggests a shortened lifespan. No one really ever expects it to happen twice - in a row. Each day is VERY hard. Sometimes I think "Is this how it is going to be, for years and years?" Each day is so busy, and often difficult to get through (lack of sleep, stressful, physical body pains).

I try to imagine caring for my boys for years to come. What will they be like a year from now? Ten years from now? Will they even still be here on this earth? If so, will I be able to lift them, feed them, travel with them...etc. I know I will adapt. Each week brings a new adaptation when it comes to them. I try to make their life as easy and comfortable as I can, always thinking of ways to make things better for them. I hope things do not get harder as they get older. I hope I can continue to find ways to adapt to their needs.

There are time when I feel impatient, and this makes me sad. I don't really lose my patience with the boys, just with our situation. Then I feel horrible because this is not their fault. It is no ones fault. But it is just really hard sometimes...

It is hard because not many people know what it is like to care for medically fragile babies (not one, but two!). I cling to the people who DO know what it is like (you know who you are!). They face the same things I do, day in and day out. And even though I go through the same thing they do - I still look at them in awe. Crazy! It is also these particular people (mostly Moms!) who also know how scary it is to think of losing your children - some have already lost theirs.

My thought process exhausts me. To think and a plan ahead what it is going to be like to care for two special needs children, and not knowing for how long. All the while I feel guilty for trying to think of what it will be like to care for them, and how hard it is going to be. I don't want them to feel like they are a burden on me. I also get exhausted thinking about losing them. I don't obsess about this thought, but it does cross my mind mostly everyday. If I see them smile, sometimes I think how much I will miss it should they ever leave me. If I am snuggling with them I think about how much I'd miss that... Or if I get mad or lose my patience, I immediately feel guilty because what if they were to be gone tomorrow or the next day?! It is exhausting to think this way! But it is hard to control, and I know I am not the only one who goes through this... Now, I'm not always thinking so grimly. It is only every now and then. But still - to think that way even once a day takes its toll.

My world has changed so much since the birth of my handsome boys. I get sad over a lot of things now.

I get sad when I see my maternity clothes - because I know I will most likely never wear them ever again. I got really sad at my 6 week postpartum check up. I about had a nervous breakdown in the waiting room. I kept thinking "This will be our last time in this office, our last time seeing these doctors and nurses." I looked around at all the pregnant ladies - and they looked liked this was just another day to them. I wanted to tell them to enjoy this! Soak it up! Because someday your option to have a baby might be taken from you!!! I'm having a really hard time dealing with the fact that our option to have more children has been taken from us. I realize there are other ways to have children...but we would love to have more of our own babies. I am not done wanting to be pregnant! Yet, even if we COULD have more babies, we still can't. There is NO way we could handle, afford, take on another baby. I would not want to take any more time away from the two boys I already have. They need as much of me as they can get!

There are times when I look at my friends' babies. I check out their pictures and I think "Wow, so that is what a 10-month old looks like." Or "Hmmm, so this is what a 14-month old does." I am so used to our "norm". I forget sometimes what the typical stages are in development. In our world, any little milestone is HUGE development, no matter what age it happens. I'm not in the world of "typical". We have our own typical.

I am amazed at all the things other babies/children can do. Or are able to do. I always hope silently to myself that parents realize how lucky they are to have each moment with their child. To hear them say a word, to watch them take a step, to drop them off at school, to sign them up for sports... I am always thinking and wishing that each parent not take any of those moments for granted. And even though my moments may not be the same, I also remind myself to not take mine for granted either.

Of course I get sad and think Aidan should be able to go trick or treating. He should be running the streets (unsteadily of course!). He should be able to hold my hand, look up at me, say Mama, throw toys... Ty should be able to look at me, and watch a toy as it moves past his face... Once again, when I think these things, I feel really bad. I feel bad for thinking about the things they should be doing at their age. Really, I just am sad because they can't experience these things that they SO deserve. They deserve to be able to jump into a pile a leaves, or a pull our cat's tail, or make a snowman. I wish SO much that they could have these experiences. I try to not be sad, and I try to not be sad FOR them.

These thoughts run through my head, all day - everyday. It is pure exhaustion. Wanting the best for my boys, wanting more for them, wanting them here always, wanting things to be easier for us as parents, wanting Jason and I to not turn on each other because we are facing so much stress...

Jason and I both find most days really hard to get through. If it wasn't for the boys, we'd probably crumple. We try as a couple to not take our stress out on each other. It is so scary knowing the divorce rate for parents of special needs children is extremely high. We don't want to crumple and fail at our marriage. We don't want to fail our boys. Once again, it is all about adjustments. Jason and I are finding ways to make things easier on us, and easier on our boys. It is a slow process some days ha!

It is so hard for the both of us to not have ANY clue what our future holds. How long will our precious boys be with us? How will life be without them should we lose them? Will we ever find a way to have another baby? We will always be stuck in this small apartment?

Enough of this pity party though! I guess I just wanted people to know that I am not strong all the time. I face really sad, dark thoughts sometimes. But they are just that - thoughts. I usually don't say anything out loud. It crosses my mind, and then I try to move on.

Really - and at the risk of sounding cliche - my boys are my everything. They bring me the greatest happiness I have ever known. Even though caring for them can be extremely hard at times, and it is so hard to see them go through rough patches... I still cling to those moments when they are peaceful, content, happy. I cling to the smiles they flash me. I hold onto their jibber jabbers. I cherish EACH and EVERY moment when life slows down, and I get to just hold them, rock them, SMOTHER them with love! Despite it all, the hard times and such, I am SO thankful for them. I hate that they have to go through the things they do, and I hate that they will miss out on many things. Yet I give thanks for them. I am so glad they were given to me. I wouldn't have wanted anyone else to care for them. I hope they know how much they are loved.

Aidan- 2 months old

Ty - 6 weeks old