I’ve been talking to a friend who recently received a diagnosis for her child, and it got me thinking – what advice do I have for someone just starting this journey? Of course, there is enormous variety in the arena of special needs parenting. What applies to one won’t apply to all. However, as I began to think through the things that I would want to know if I were back at the beginning, I thought it would be worth putting down in writing. And for those whose families have not been touched by special needs or long-term medical issues, stick around. You might learn something as well.
1. It’s okay to grieve.
Your child is still here, but at the same time, you are still experiencing a great loss – the death of a dream, a reality that is not quite as expected. No one wants to hear that their child may experience difficulty, be different, or suffer. Allow yourself to feel whatever emotions you have.
2. Not everyone will understand, and people will likely say all the wrong things.
I could make a book of all the crazy, unhelpful (and sometimes hurtful) things people have said to me over the years. “I bet he’d eat ice cream.” – Uh, no. It’s not that he won’t eat. It’s that nearly everything makes him terribly sick. “I have a picky eater too.” Yes, I also have a picky eater – but it’s not the one with the feeding tube. There is a HUGE difference between refusing food due to pickiness and not being able to digest it properly. Try sitting at yet another birthday or school party with a toddler who wants so badly to eat everything there but can’t.
One that continues to make me uneasy is when new parents state, “He or She’s healthy, and that’s all that matters.” I know what they mean, but there’s something about it that makes me cringe. Are they saying that since I have a child that’s not 100% healthy, he’s missing the only thing that matters in life? That his life is of less value? Yes, we all pray for healthy children, but there is life to be lived after a diagnosis. Thankfully, my son has learned to live well despite his health issues.
So what do we say to others when we’re not sure what to say? Many times, it’s best to simply let someone know that you love them and are praying for them. (Then actually remember to pray for them!) Another thing that usually works for me is to ask the person, “So, how are you feeling about all of this right now?” Then, stop talking and just listen! We often like to project our own feelings onto others, who may feel something completely different than we expected. This will let you know exactly where they are and what they need in that moment.
3. Everyone will have an opinion about what you should do next.
There are a million and one “remedies” for everything these days. We have tried many things throughout the years. Some have helped, and many more haven’t. Just because someone suggests something doesn’t mean it’s the right thing for you. I often pray James 1:5 over my family, asking God for wisdom to know the right thing to do at specific points in our journey.
At the same time, don’t be afraid to try reasonable ideas that you think might be a good fit for your family. Some alternative therapies have provided our greatest successes over the years.
4. Find balance in the chaos.
It’s easy to spend hours researching, attending every type of therapy, going to every doctor. However, you have to remember they are still kids. Decide what interventions are reasonable (and affordable) for your family during each season of life. Do what needs to be done, but make sure you leave time to play, connect, and enjoy each other.
We’ve had seasons of intense therapies and numerous doctor appointments. We’ve also had seasons where we needed a break. Again, pray for wisdom, and move forward with a plan that’s right for you – without feeling guilty.
5. Eventually, you have to find your new normal.
Yes, take time to grieve (#1). At the same time, you eventually have to find a way to navigate this “new normal.” Your kids need your example of how to live joyfully in this less-than-perfect world. I think John Piper says it well…
This is not a one-time event either. At first, there may be a long periods of grieving. Eventually, you may just need a moment to feel the weight of your emotions alone in the shower each morning before boldly facing the day. Before you know it, you may have gone several weeks or months. The point is that, with God’s strength that has been made perfect in your weakness (2 Corinthians 12:9), you keep on getting back up and moving forward.
6. Professionals don’t know everything.
As with every profession, there are some good doctors, etc. out there, but there are many bad ones too. Most will see your child for no more than 5 minutes at a time and think they know everything there is to know. (If you could see my face, you would know that I’m rolling my eyes now.) Don’t be afraid to disagree with the “professionals.” They are NOT always right. At the same time, be open minded to new ideas and insights from their experience that might be helpful.
7. Support may (will) fade.
We live in a day where many are suffering. The sheer amount of pain and loss is overwhelming. While, people may be able to stick with those with shorter-term difficulties, eventually support fades for those with long term diagnoses and health issues. If you have someone that sticks around for the long haul, you are blessed. See #9.
8. Sometimes you will feel like an alien from another planet.
There are days when you will feel like you just don’t fit in anywhere any more. You’ll be somewhere with a group of friends and realize you cannot relate to anything they are talking about. During certain seasons, there is no time (or money – since you’re spending everything you have on doctors and therapies) to look at the latest gadgets, read the latest news, or follow the hottest trends. Or they may all be talking about milestones their kids are meeting that your child may never reach - or activities in which they may never be able to participate. Make sure you have done #9.
9. Build your tribe.
Finding other families you can relate to is a MUST! While support in general may fade, others with special needs or chronic health issues are worth their weight in gold. (And that’s saying a lot with the cost of gold these days!) We have met some AMAZING families through this process. It’s good for your kids to know that they are not alone, that there are others out there dealing with difficulty. Seek out other families that you can relate to.
I have specifically sought out other families who have an older child with a feeding tube that my son can talk to/ hang out with. (They are not easy to find.) It has helped him (and me!) tremendously. Whenever I hear of a new “tubie” family, I make a specific effort to reach out to them and let them know I’m here if they ever have any questions.
10. People will call you brave, a hero, a saint – but you usually don’t feel like one.
I’m just a mom who wants the best for her kids. Most everyone else would do the same thing in my shoes. It’s only by God’s grace and strength that I get out of bed every day!
11. It’s okay to be human.
Everyone has bad days. When you have a child with special needs and/or health issues, there’s a lot more that can go wrong each day. Sometimes, you will handle it like an Olympic champion. Other days you may look more like that salmon swimming upstream, about to be eaten by a bear. Thank goodness His mercies are new every morning (Lamentations 3:22-24).
12. Stay close to Jesus.
There were times when I thought I should change my life verse to Proverbs 13:12, “Hope deferred makes the heart sick.” Instead I have decided to live by Job 13:15, “Though he slay me, I will hope in him.” I need Him, and I can’t make it without Him. Sometimes I understand Him, but mostly I have no clue what He’s doing. He’s not surprised by my thoughts and feelings. He welcomes me to bring them all to Him. HE is the only thing that’s gotten me through. (See this post.)
13. It’s all about that
“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” (2 Corinthians 12:9) It takes grace to embrace this new normal. It takes grace for me to respond kindly to those who unknowingly (and sometimes knowingly) say and do hurtful things. It takes grace for me to respond kindly to my kids and husband when life has sucked everything I have left right out of me. And it also takes grace for others to do these same things for me.
“For from his fullness we have all received, grace upon grace.” John 1:16
For those who are part of my tribe, who have walked with me on this journey, I am forever grateful for your friendship.