My passion has always been to help just one mom who feels like she is drowning in her baby’s diagnosis. If you have been here you know I am an open book about our childrens’ diagnosis and our very crazy complexed life. Two babies both had NICU stays, surgeries at 2 weeks old born with the same but a little different malformations and now navigating through the g-tube life.
Fast forward to this year where I met Sara another Instagram medical momma. A mom who spent countless days in the NICU with her youngest who was a preemie, with a diagnosis of Down syndrome.
She is an incredible mom, she beast modes it- works out daily (which I need to get on that band wagon). She originally reached out to encourage me, to uplift me to give me a virtual hug. I remember sitting in the car as we were waiting to go into Boston Children’s Hospital for Emerson first appointment there listening to her and holding back tears. Then it got me thinking about how amazing this momma is and how hard she works for not only herself and her family but for others.
We put our heads together to create a space were moms who have babies in the NICU, NICU graduates, moms who have children with special needs or moms who are facing tons of medically complexed diagnosis have a space to feel comfortable. A place where there is no judgement. A place where they can vent and cry. A place where in the chaos and darkness there is a little light. So we did just that!
We went live on instagram to answer some of the questions for mommas who are in the thick of it and answered these questions. We are rookies and have no idea what we are doing so we rushed off pretty fast as we found out Instagram live has a timer for how long you can go live. Click here to watch!
- How do we deal with the anxiety surrounding the unknowns and challenges of raising a child with special needs?
Faith- my faith grounds me. Just because I have faith and believe does not make me fear less, or have less pain, it allows me to have hope. Our church community was praying daily for both boys when they were born and continue to do so. That is huge for us!
Self care- doing something for yourself- and I don’t mean eating a hot meal, taking a shower, brushing your teeth or getting yourself dressed for the day. Those are just every day to do’s. I mean working out, writing, reading, listening to music really loud, getting your nails done, laying out in the sun for an hour or crying your eyes out for a good hour. Anything that allows you to decompress, and that looks different for everyone. None of these are the wrong way to take time for yourself. Whatever you do to help you, is the BEST thing for you!
Having relationships with like minded people- Knowing other moms who are walking a similar path. There is nothing wrong with making new friends who understand what you are going through. It might affect other relationships but all relationships are different and there is a reason for that. It’s good for your mental health. Even my family- love them but they can only relate and understand to a certain extent and it’s hard for them too.
I have a dear friend who’s daughter has Klippel- Trenaunay Syndrome and Cloves Syndrome together. Even though our children’s stories are different I could not imagine going through all that we have without her. She has been such a vital part of my emotional state, of course that’s next to my wonderful husband.
Letting yourself think those thoughts- What I mean by that is we don’t ever know the future and it can be a slippery slope if we start thinking about all the “what-if’s” for our children. The healthiest thing I think you can do is to think of those situations that pop up in your head. Allow space for them, think about what you would do if this or that happened. It’s called negative visualization. Sometimes my thoughts can been awful- bad thoughts but I allow myself to go there because I feel like if it ever did happen I would be more prepared. Which has definitely helped in many emergent situations. After you are done thinking about those things, move on- don’t stay there because that’s where you can get into trouble of overwhelming anxiety. A way you can move on is talking aloud to someone about it or writing those thoughts down for no one other than yourself. 
2. What we wish we knew about life after the NICU
As badly as we wanted to get out of the NICU, there was comfort in all the wires, nurses, doctors and beeping. You can do it! You have got this! So many days and nights of crying are fine!
There are different programs to look into after the NICU where you can have home nurses that come to your house to check on the baby (and you!) depending on the state you live in. Don’t be afraid to ask!
There are so many support groups now. Social media is a wonderful thing for us mommas who need a glimmer of hope, who need someone else’s life to compare ours to. I know that sounds awful however perspective is key to getting through a lot of the trials and struggles we are facing. It is not to diminish or down play what you are walking through because pain is pain no matter what you’re facing.
It is stressful, but it won’t last forever.
You will wish the baby stage away.
You will want them to grow bigger and feel guilty about it.
You will feel defeated but you WILL get through it.
3. How do you advocating for your children?
I realized how much we rely on our doctors- we have had to learn what it means to advocate for our children. I am still always learning how that looks. YOU know your child better than any doctor or nurse. YOU are with them 24/7 and we as mommas were born with that mom gut. I truly believe the Lord gave us that for a reason. When you think or question if something is wrong- call their doctor! Don’t let fear or doubt creep in!
Don’t let others tell you what you should be doing for your babies. That includes your family. Most people have the best intentions but most of the time we never asked for their advice.
If you are not feeling like you’re being heard and you are feeling unsettled by your child’s doctor look else were! Getting a second opinion is totally fine! If a doctor is not okay with you getting a second opinion- third or fourth they are not the doctor for your family.
Advocating for your children means standing up to those people who say certain comments. Most mean well but for those that don’t- stick up for your baby in the most gentle way you can while also standing your ground.
Advocating for your children also means advocating for yourself. Asking for help is a must but don’t feel forced to need help either. Sometimes just adjusting is enough stress, never mind someone coming over to do your laundry and then asking where everything is. They mean well but that just adds more stress to your already stressed life.
“They say 90% of children are like dandelions they grow with little help. The other 10% are orchids that need a little more extra love and care.”