I’m not a series kind of person. But I’ve had a few blog post ideas in my head and kinda feel like they all tie into each other. Today we’ll discuss the special needs family, Wednesday – Baby Sitting and lastly Friday – what you can do to help. I will try hard to not repeat myself through this 3 part post…so please bear with me.
My hubby Juan and I have been married almost 17 years. We started out young, and due to that, we have faced a lot of challenges and obstacles. At one point we did have a short separation, but we found our way back together and have been stronger since. We thought we had handled all the different stresses imaginable…until Peanut came into our lives. Let me explain!
Peanut has brought so much joy and happiness to our family. On a daily basis, we have so much fun playing and snuggling with her. As a whole, she really did complete our family.
However, along with her being special needs, this has also brought countless doctors appointments and therapy sessions. It’s taken us away from the big kids days at a time. It’s taken a hit in our finances (Having to travel 2 hours away for each doctor apt.) as well as purchasing special toys or items helpful for her therapy. At times we joke because it’s usually just Juan and I with Peanut and we say she probably looks at her siblings as her cousins. It’s a joke…but it’s also sad. We hate having to be apart so often or feeling like the big kids are being left out. But we have amazing kids and so far they have been totally understanding when it comes to our travels. Especially since this summer they went along with us for appointments and realized how boring our trips really are 🙂
Because of all of this, it has put a lot of stress and strain on our marriage. By the time we have a chance to spend any time together, we are exhausted and irritable. With Peanuts lack of sleep, we are often going on around 4 hours of sleep per night. We haven’t gone on an actual date (kid-free dinner, not grocery shopping, or dropping off kids) in about 5 months, and haven’t had a night alone in almost a year! We are worried about her health, her progress, and ensuring she is receiving all the care and services she needs. Top all that off with 3 older kids who are active in school, Juan’s job as a youth minister, my photography work, family, and church, we are pretty much tapped out. Our marriage has basically taken the back seat to everything and everyone else.
With only the help of God, we are still holding on strong. But it’s definitely not how we would hope our marriage to be.
So what is my point for sharing this? Not for your pity or sympathy, but to help you understand what goes on in Special Need families. I’ve known other families who have children with special needs. Prior to Peanut, I could never even imagine the daily struggles and stresses they face. They always seemed to have it put together and happy. And you know what, they probably were. We try to not pretend we are ok…but we do all of this because we love Peanut! It’s the things you do to make your children’s lives a little better. The stress, the fears, the sleepless nights, are done all out of love. Do we wish we had the time and more energy to put towards our marriage, of course! But we are praying that this sacrifice now will all be worth it in the long run.
I don’t feel that this is something only our family is going through. I’ve spoken to other mamas and I can hear their exhaustion. Some families are separated for months at a time. Their sweet babes have been admitted to the hospital countless times, they are facing life-threatening surgeries and working so hard each day to help them grow. Often times Juan and I feel so blessed that Peanut has not struggled as much as other kiddos her age. So many families are struggling just to keep their lives together. And I know from experience, they often feel alone and secluded from loved ones around them.
Because of this separation, Juan and I have seen a great need in our area for the special needs community. Currently, Juan is setting up a plan for us to start a Podcast for families just like us. We are hoping this will help families like us share our stories and experiences and educate each other. I recently got to work with some other local mamas and we are in the process of establishing our own Down Syndrome Network. Our church will be hosting a Night to Shine this February for all individuals with cognitive or physical disabilities over the age of 14 in our county. Even this blog has opened us up to other families that we would have not been able to connect with otherwise. All these things are just small opportunities to connect families together who often feel exhausted and alone.