{special needs} Parenting Archives - Page 4 of 6

What a Friend Did That Meant The World to Me

By Jody May 6, 2015

My son was born by emergency c-section (his heart rate was in the 70s) pretty much as I walked into the hospital in labor.

After his chaotic delivery, the Dr let me know that his birth was one she would always remember, that the line of him being born alive or not making it through the birth was so thin that had we waited any longer to come in we would have lost him.

I’m so glad we came in when we did, despite having a huge argument right before about of all things, some relaxation music I wanted to bring with to keep things calm as I labored.

Calm and my son’s birth are definitly not synonomous.

When he was handed to me in the recovery room, he began choking. He was drinking formula to help his blood sugar, which was dangerously low, and as he looked at me in excited recognition (those seconds were beautiful) he turned blue, choked, and was grabbed from my arms.

Doors flung open and the nurse tending to me ran out with him. He was resucitated in the NICU and remained there.

It was chaotic, scary, and I instictively knew we were about to embark on a journey that would bring a new depth into our lives like nothing else could.

The next day a kindhearted cariologist came into my hospital room and drew us a picture (I later learned cardiologists are notrouious for drawing pictures :-)) The picture depicted the four things wrong with the way my son’s heart had formed, signifying the congential heart defect known as Tetraloy of Fallot, a condition requiring open heart surgery.

We were devastated and afraid. This was only our second day as parents and we had only even held our son for mere seconds.

I honestly wouldn’t have been able to pick him out of a line up of babies, our initial meeting was that brief.

And yet here we were, preparing our minds and hearts that our precious baby boy would be needing open heart surgery in the coming months.

It was overwhelming. So overwhelming.

When we let family and friends know, they were genuine in showing their concern, asked us questions and wanted to learn all that they could from us about what our son was facing – and I truly appreciated the support.

However, as I was struggling as a first time new mom, with a medically fragile child, answering the same questions over and over began to really take a toll on me. The more I talked about it, the more overwhelmed and fearful I became.

I grew weay, began to withdraw and was having a hard time articulating the effect continuing to to provide information was having on me.

Then one evening a good friend stopped by and we started talking about my son and his upcoming surgery.

As I was talking about it she didn’t ask questions.

She wasn’t curious about the condition or needing any information, she just listened.

And I found myself feeling refreshed and encouraged as I talked with her.

What was so different about my time spent with her?

When this particular friend learned that our son had a heart condition, she began researching and learning all about the condition herself.

By doing that, she unkowningly lifted the burden of information bearer off my shoulders.

She was able to help me process the magnitude of what our son was facing, dialogue with me about what I had learned (because she had read a lot of the same information), and most importantly, she was able to just listen to my worries and fears.

Did our other friends do anything wrong? Absolutely not! I want to be very clear on that.

I appreciated alll our friends and family showing their support and taking a very genuine interest in learning about the challenges we were suddenly facing.

This particular friend though, went above and beyond in a way that I didn’t even know I needed.

As soon as I learned what she had done, it meant the world to me.

Looking for a way to help a family member or friend who just found out their child has special needs?

For the parents of a child with special needs, especially when just learning about it themselves, the news of a child’s diagnosis is overwhelming. For some parents, like myself, to keep providing the same information over and over only adds to the overwhelmingness of it all.

A great way to be a support to a family member or friend in that position is to learn all you can about the diagnosis yourself. By learning about it yourself you will be able to provide a different level of support for your loved one.

If your family member or friend chooses to give you the information about it themselves, great! But if not, if its too much for them, you’ll be educated yourself and be able to provide the listening ear and support that they really need.

If you are the parent of a child with special needs and are feeling overwhelmed about keeping family and friends updated on how your son or daughter is doing, a caring bridge page, blog, or a private facebook page or group is a great way to keep your support system informed, ONLY if it doesn’t add more to your already full plate.

And if you are a family member or friend following along on a family’s medical journey, I encourage you to make every effort to learn what you can about any new procedures, tests, diagnosis, therapies or treatments the family is facing.

I guarantee you, it will mean the world to them!

My Heart Cried This Valentine’s Day

By Jody February 13, 2015

My heart cried tonight.

It cried really really hard. It cried big gulping soul wracking sobs.

Sobs that left my heart aching. Sobs that left my heart feeling like it had shattered into pieces. Sobs that reminded me that the fragile dull heart breaking pain that has lived inside of me since learning of my son’s diagnosis is still very much there.

A pain that seems to just lurk there dormant deep down till random moments come along that awaken it and bring it to the surface with such intensity that I feel like I am just receiving the news of his diagnosis all over again instead of five years having gone by.

This soul wracking, heart breaking pain made its presence known tonight.

It showed up as I was prepping for my son’s Valentines celebration at school. As I sat there signing his name on the cards for him to give to his classmates, I realized how sad I am that he’s not yet able to fill the cards out himself.

Recently I had seen a picture of a friends son the same age as my son making Valentine’s Day cards for his classmates and at that moment that picture floated thru my mind. It made me think of how wide the gap between him and his peers is becoming and that many of his classmates will be signing their own names or even making their own cards this year.

It made me think of how helpless my son is.

And not helpless in a “I pity him shame on me for saying that” way, but helpless in a “I am his mom and his main caregiver and I know intimately how much assistance he needs for even the simplest of tasks necessary to life, not to mention extras like filling out Valentines Day cards.”

It breaks my heart to really honestly acknowledge his helplessness and to allow myself to really face it.

I feel sometimes like I’m not supposed to say how sad I feel about him not being able to do so much, but it honestly breaks my heart.

I’m so sad he has such extreme disabilities and I so wish he didn’t. It’s so hard to watch him try to do things or want to do things that his body just doesn’t allow him to do.

I feel it’s frowned upon and not necessarily very politically correct to admit these feeling but this is honestly just how I feel.

Feeling this way and acknowledging it doesn’t mean I don’t love my son or that I’m not grateful to be his mom or that he doesn’t also bring me a lot of joy. And it certainly doesn’t mean he’s less valuable than any other person.

It means it’s hard to watch your child experience these challenges every single day and not feel any sadness about it and not wish you could change it for them.

So tonight as the magnitude of the challenges he faces hit me, my heart just cried, trying so hard to rid itself of a heart break that really no amount of tears can ever wash away.

The Lord is near to the broken hearted and saves the crushed in spirit. Psalm 34:18

My Daughter Started Crawling and How I Felt About It

By Jody February 6, 2015

I was standing in the kitchen prepping my son’s g tube feed when I heard the rhythmic sound of determined little hands slapping the floor, steadily making progress towards their desired destination.

I held my breath as the slapping stopped and a decision needed to be made. At a crossroads she sat, either go straight to discover the fun at the end of the hallway or veer to the right and find mommy.

My daughter just started crawling.

This was her third day at it and the first time she had ventured beyond the comfort and safety of the family room. I was thrilled to look down and see that while sitting at that crossroads she chose the path that led to me. I kneeled down to snap her picture and sat on the floor clapping with her and letting her know how glad I was to see her.

It was a bittersweet moment. These past few days since this new found skill of hers has taken off have been filled with bittersweet moments.

This was the first time one of my children have been able to come to me on their own.

My son is quite the snuggler and loves to be held and kissed but even when I know he wants to be close to me I am the one who goes to him. The fact that my daughter intentionally sought me out and made her way to me was a moment I treasured.

But it in the midst of enjoying that moment with her, there was the stark realization of what I have missed in these moments that I have longed to have with my son.

When my daughter started crawling I was not prepared for how emotional it would be seeing her be able to move from one point to another all on her own. It was a mixture of joy and sadness, joy for my daughter and her newfound freedom to enjoy and explore the world around her and renewed sadness that my son is still waiting for that freedom.

I spoke with several other moms whose family makeup mirrors my own and found I am not alone in having such a wide range of emotions as milestones are met by one child while prayers are still waiting to be answered for the other child.

As times goes on and we adjust to our “new normal” of having a child who is mobile, I am sure these bittersweet feelings will not continue to hit me so hard.

In the meantime I am seeking to make the most of these firsts with my daughter and savor them as I continue to treasure and enjoy the beautiful moments that I have had and will have with my son as well.

I am finding these moments with both of them will look very different, but I want to make sure I treasure them all just the same.

Let’s Talk: Anyone else feel or have felt the same way when their first has challenges that the second one doesn’t? Whether you have a child with special needs or not do you remember how you felt when your child first found you on their own? What are some of your favorite memories with your little ones?